Thanks for the work you are doing and if you have any
other insights that you think we should have before we put our
final signatures on the report, we'd like to have them, because
it's an opportunity for us to get from you or glean from you your
personal insights. It may be difficult for you, but as I say, I
think you sit in a very unique spot to get a sense of what is
really going on out there in a variety of ways and watch the
movement of the trend lines in this thing which is almost as
important as the photograph of the factual data to take it and
begin to link it together and see how it's migrating, how the
policies are being migrating and converging, as I mentioned
earlier.

So thanks for coming and we'll adjourn this session
until tomorrow morning at 9:00 o'clock.

(Whereupon, at 4:10 p.m., the meeting was adjourned to
reconvene tomorrow morning at 9:00 a.m.)

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PRESIDENTIAL COMMISSION ON THE
HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC

The Hearing was held at the
Interstate Commerce Commission Building
Hearing Room B
12th and Constitution Avenue, N.W.
Washington, D.C.

Tuesday, May 17, 1988

COMMISSION MEMBERS PRESENT:
COLLEEN CONWAY-WELCH, Ph.D.
KRISTINE M. GEBBIE, R.N., M.N.
FRANK LILLY, Ph.D.

CORY SerVAAS, M.D.

THERESA L. CRENSHAW, M.D.

RICHARD M. DeVOS

BENY J. PRIMM, M.D.

JOHN CARDINAL O'CONNOR

WILLIAM B. WALSH, M.D.

POLLY L. GAULT, EXECUTIVE DIRECTOR

COMMISSION MEMBERS NOT PRESENT:
JOHN J. CREEDON
BURTON JAMES LEE, III
PENNY PULLEN

ADMIRAL JAMES D. WATKINS (RET.), CHAIRMAN

 

 
 

 

I-N-D-E-X~-

WELCOME
Admiral James D. Watkins, Chairman

PANEL ONE
HOMELESS PERSONS WITH AIDS
Clarence Cain, Former Attorney
Person with AIDS

James Stimpson, Assistant Secretary for Homeless
Policy, Deputy Assistant Secretary for Policy
Development, U.S. Department of Housing and Urban
Development

Peter P. Smith, President
The Partnership for the Homeless, New York

Francis J. Stoffa, Executive Director
Philadelphia Community Health Alternatives/The
Philadelphia AIDS Task Force

Ganga Stone, Executive Director
God's Love We Deliver, and
Viktor Anderson, Director of Operations

PANEL TWO
LEGAL AND SOCIETAL ASPECTS OF SEXUAL ASSAULT AND HIV
TRANSMISSION
Roy Hazelwood, Ph.D., Supervisory Special Agent
National Center for the Analysis of Violent Crime,
FBI Academy

Ann W. Burgess, D.N.Sc., Van Ameringen Professor
of Psychiatric Mental Health Nursing, University
of Pennsylvania

Jane Burnley, Ph.D., Director
Office for Victims of Crimes,
Department of Justice

Ira Reiner, J.D., District Attorney
County of Los Angeles

Dorothy J. Hicks, M.D., Professor of Obstetrics
and Gynecology, University of Miami School of
Medicine; Director of Rape Treatment Center,
Jackson Memorial Hospital, Miami

PAGE

99

100

101

104

107

110

1l2

136

139

143

148

152

 

 
I-N-D-E~X- (continued)

PANEL THREE
AIDS AND ADOLESCENTS
Karen Hein, M.D., Associate Director of
Pediatrics, Director, Adolescent AIDS Program,
Montefiore Medical Center, New York

A. Damien Martin, Ed.D., Executive Director
Hetrick-Martin Institute, New York

James T. Kennedy, M.D., Medical Director
Covenant House, Associate Professor, NYU
Medical School .

PANEL FOUR
PROGRAMS FOR HARD TO REACH POPULATIONS
Larry Siegel, M.D., American Medical Society
Alcoholism and Other Drug Dependency Task Force,
AIDS Task Force

Nancy Block, Coordinator of Professional and
Communication Training Program, Gallaudet
University National Academy, College of
Continuing Education, and

Holly Bell

Jean McGuire, Executive Director
AIDS Action Council

Andrew Burnett, Children's Better Health
Institute, Indianapolis

Bob Silver, Administrator

Saturday Evening Post

Society's Health Education and Testing
Program, Indianapolis

PANEL FIVE
THE NATIONAL MEDICAL ASSOCIATION
Virginia Caine, M.D., Assistant Professor
Medicine, Division of Infectious Diseases,
Indiana University School of Medicine; Director
of Communicable Diseases, Marion County
Health Department, and Bill Garrett

 

 

PAGE

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184

187

211

215

218

221

233

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P-R-0-C-E-E-D-I-N-G-S
9:03 a.m.

MS. GAULT: Ladies and gentlemen, distinguished
witnesses, members of the President's Commission, my name is
Polly Gault. I am the designated federal official here today,
and in that capacity it is my privilege to declare this meeting
open. Mr. Chairman?

OPENING REMARKS
CHAIRMAN WATKINS: Good morning.

Today, the Commission will hear testimony on a variety
of issues surrounding the HIV epidemic, including the increasing
problem of homelessness, the problems of HIV transmission
resulting from sexual assault, specialized education programs for
hard-to-reach populations, and a presentation by the National
Medical Association.

In yesterday's hearing, the Commission heard a review
of HIV-related legislation in the states, two experts on
laboratory quality control, testimony from Ms. Constance Horner,
Director of the Federal Office of Personnel Management, witnesses
from the nation's art community, and a presentation on the AIDS
quilt given by the Names Project.

PANEL 1: HOMELESS PERSONS WITH AIDS

CHAIRMAN WATKINS: Our first panel this morning will
deal with difficulties faced by individuals who lose their jobs
and subsequently lose their housing as a result of HIV infection.
We will hear testimony from the federal office responsible for
housing programs, the Department of Housing and Urban
Development, and hear what funds are available to municipalities
and private sector groups to build shelters and long-term
housing. We will also hear first-hand accounts from an
individual who has experienced the problem, and three
organizations that work with the homeless.

Our first witness today is Mr. Clarence Cain, of
Washington, D.C. We also have with us Mr. James Stimpson,
Assistant Secretary for Homeless Policy, Deputy Assistant
Secretary for Policy Development, in the Department of Housing
and Urban Development, Mr. Peter Smith, President, Partnership
for the Homeless, New York, Mr. Francis J. Stoffa, Jr., Executive
Director, Philadelphia Community Health Alternatives/The
Philadelphia AIDS Task Force, and Ganga Stone, Executive
Director, God's Love We Deliver. First, Mr. Cain.

99

 

 
 

 

MR. CAIN: Good morning. My name is Clarence Cain,
and I have AIDS. I was born in Darlington, South Carolina, one
of ten children, and the only one to go to college. I graduated
from the University of Virginia with a B.A. degree in 1974. I
received my law degree from the University of Virginia in 1977. -

For the past ten years, I have worked as an attorney
for Legal Services, the federal government and a savings and
loan. Most recently, I was employed as a regional partner for
Hyatt Legal Services in the City of Philadelphia. I was
responsible for ten offices, 32 attorneys and a total staff of
over 70 employees. My base salary was $44,000.00, with the
possibility of $30,000.00 more in bonuses.

A year ago, my future was bright. Everything I always
wanted was in sight. In July of 1987, I was admitted to the
hospital and diagnosed as having AIDS. I then knew that I
didn't have long to live, but even in my hospital bed I continued
to do my job. Three days after I was discharged from the
hospital I was told by my boss that under no circumstances could
I return to my job. They said I could no longer do the job, even
though my doctor had informed them that I would be able to return
to work. They offered me a demotion to a staff attorney.

I filed a complaint with the Pennsylvania State Human
Relations Commission. The Commission has recommended
reinstatement to my old job, with back pay. Yet, today, I am
still unemployed. As a result, I have lost my apartment, I have
lost my condominium here in Washington, I have lost my car, and
I've been forced into bankruptcy.

This is not just about a disease. This is about
people. This is about me, a human being. I am someone. Through
hard work and determination, I had become a role model. Now, my
sister, who lives in a ghetto in New York, sends me money.

I was depressed, dehumanized and felt completely
worthless. On many occasions, I have thought about killing
myself. I believe in Joel Hyatt. I believe in his sincerity and
compassion, but Joel Hyatt, like so many others in this country,
did not care about me, that me that now has AIDS. He has
discarded me, cast me aside to just go away and die, not just to
die, but to die poor.

No one wants to hire someone with AIDS, and it's
almost impossible to find a challenging job. Because I can't
find work, my savings will run out in about six months. At that
point in time, I will have a hard choice to make. Will I buy
foods and medicine and live on the street, or will I pay rent and
have a roof over my head? This is a slow death, made even
Slower because Hyatt Legal Services took away my ability to take
care of myself, and what little hope I have left.

100

 
 

 

First, the disease strips us of our health, then
society strips us of our freedom of self-determination, self-
respect and dignity, and, perhaps, that is the real tragedy.
Although it is the virus that kills the body, it is society that
is destroying the people. Thank you very much.

CHAIRMAN WATKINS: Thank you, Mr. Cain, for having the
courage to come before the Commission today. I can assure you
that your message does not fall on deaf ears in this Commission.

CHAIRMAN WATKINS: Mr. Stimpson?

MR. STIMPSON: Thank you, Mr. Chairman, for inviting
the Department of Housing and Urban Development to testify on HUD
programs which can be used by communities and organizations to
assist persons with AIDS, particularly, homeless persons.

My remarks will very briefly address HUD programs that
are specifically authorized to meet the needs of the homeless,
HUD resources and HUD housing programs that can be used by
homeless persons with AIDS, and the extent to which HUD programs
can be used for long-term care facilities. The Department of
Housing and Urban Development administers five programs that were
enacted last year, specifically designed to meet the needs of the
homeless.

CHAIRMAN WATKINS: Would you all, please, pull those
microphones and talk right up close, because we want the people
in the back of the room also to hear you, and it's very
aifficult for then.

MR. STIMPSON: Yes, sir.

CHAIRMAN WATKINS: Pull it right up close to your
mouth.

MR. STIMPSON: The Department of Housing and Urban
Development administers five programs that were authorized last
year under the Stuart McKinney Homeless Assistance Act for
homeless. Funds available under these programs may be used for
the acquisition and/or renovation of facilities for use as
temporary shelter for homeless persons, including homeless
persons with AIDS.

Bills have been introduced in the Congress to
reauthorize these programs for fiscal years '89 and '90, but at
this point it is not clear which specific programs will be
available in this category, although, there certainly will be HUD
programs that I will talk about in a minute for this purpose.

The McKinney Act homeless program, perhaps, of most
direct interest to the Commission members, is HUD's Transitional

101

 

 
 

 

Housing Demonstration Program, which was funded at $65 million
last year, and a further $49 million this year. This program is
intended to develop innovative approaches to provide housing and
services for homeless persons who are capable of making a
transition to independent living. In fact, we are receiving
applications for this program in this current round of funding
today. Another program established in the McKinney Act, which
would be of particular interest to the members of the Commission,
is a program to assist communities in the rehabilitation of
single-room occupancy dwellings. Eligible applicants for this
program, which is called the "Section 8 Moderate Rehabilitation
Program," are of state and local public housing agencies.

Under the program, private funds pay for renovation
work and HUD funds are used to provide rental assistance to low-
income households, so that the property owner can repay the loan
for the rehabilitation work. And, in December, 1987, the
Department of Housing and Urban Development awarded $35 million
to 19 public housing agencies to develop over 1,000 units of this
housing. One project funded under the program is the Phillips
Hotel in San Francisco, which will provide 33 single-room
occupancy units in a structured living environment for homeless
people with AIDS or AIDS-related conditions, and will provide
concentrated support services, counseling, money management and
health monitoring.

HUD has other regular ongoing programs that provide
funds to communities which can be used for facilities for the
homeless. One of our largest programs is the Community
Development Block Grant Program, under which we distribute about
$3 billion a year by formula to states and cities. It's a
flexible program which can be use by local communities to meet
shelter and longer-term needs of homeless persons, including
persons with AIDS. We have actively encouraged states and cities
to use those block grant funds for the homeless, and over the
past few years over $165 million has been used for homeless
facilities and operating costs of shelters.

Let me mention HUD programs that make funds available
for permanent housing. Our housing programs now focus on making
housing which is already available in the private rental market
affordable to the poor through rental assistance subsidies
provided through Section 8 rent certificates and housing
vouchers.

. We currently provide housing assistance for over 4
million households nationwide. That includes about 1.4 million
units in public housing, and over 1 million units in Section 8
certificates and housing vouchers.

Homeless persons and others with AIDS may be able to
find affordable housing through these housing programs.

102

 

 
 

 

While single non-elderly persons normally have a low
priority for admission to HUD programs, if a person is
handicapped or disabled they do have a priority for admission,
and some persons with AIDS may qualify in local public housing
authorities for priority admission, as either handicapped or
disabled.

I do want to stress the importance of using the
existing HUD assisted housing as a potential resource for
permanent housing. We have new allocations of housing vouchers
of about 100,000 units a year, and with a turnover rate in our
ongoing program of about 10 to 15 percent there are
approximately 400,000 to 600,000 units a year that become
available for new admissions to federally assisted housing.

The Department of Housing and Urban Development does
not have any programs which provide direct funds for the
development or renovation of long-term care facilities, such as
nursing homes, or boarding homes, although the Block Grant
Program that I mentioned provides funds that could be used for
those types of purposes.

HUD does insure mortgage loans made by the public or
private sector to support the development or renovation of
intermediate or long-term care facilities. This is done under a
section of the National Housing Act. This, what we call the
"Section 232 Program," is a market-rate program which could be
used by private, non-profit or for-profit sponsors to provide
nursing home intermediate care or board and care beds for AIDS
patients.

So far, however, we have not received any quantity of
applications which are oriented to AIDs patients, and because
this program is a market-rate program, a key consideration in
providing insurance is whether or not there will be adequate
income to pay off the mortgage. The major impediment to the use
of this insurance program for persons with AIDS has been the lack
of funds to pay the operating costs associated with boarding
homes and nursing care facilities. Only four states now have
Medicaid payment levels for persons with AIDS that approach the
level of reimbursement necessary to make the development of
boarding homes or intermediate care facilities for persons with
AIDS financially feasible.

In summary, there are a number of HUD programs and
resources that can be used to assist persons with AIDS, but I do
need to point out that need because most of these resources are
administered by state and local governments, and local public
housing agencies, groups working with AIDS victims need to focus
their efforts to gain access to these programs at the state and
local level. Thank you, Mr. Chairman.

103

 

 
 

 

CHAIRMAN WATKINS: Thank you, Mr. Stimpson.
CHAIRMAN WATKINS: Mr. Smith?

MR. SMITH: Yes. Thank you for inviting me here this
morning, Peter Smith, President of the Partnership for the
Homeless, which as reported in The New York Times last March,
operates the largest private emergency shelter network and
permanent housing program for the homeless in the country.

Because New York has, as reported in The Times this
morning, has one quarter of the total PWA and PWARC case load in
the entire country, I'll go right to the point of what the need
is, and what the shortfall is, both in existing facilities for
homeless PWAs, as well as PWARCs, and the shortfall in the
planning.

At the present time, there are 6,000, roughly, close to
7,000 PWAs alive in New York City. It is estimated that there
are ten times as many people with ARC alive, so you are talking
about 77,000 people. Of those, we estimate that at least, this
is a conservative estimate, 25 percent over the next three years
are going to require some kind of housing assistance, or they are
going to wind up on the streets, or, perhaps, worse, in some
people's estimate, a 1,000-bed congregate armory city shelters.

Right behind them are 400,000, an estimate 400,000, who
are infected with the HIV virus, and who, according to the
estimates of our Health Commissioner, 50 percent of those, or
200,000 more within the next five years will actually come down
with AIDS or AIDS-related complex. Again, using the very
conservative estimate of 25 percent of those 200,000, i.e.,
50,000 more over the next fives years, in addition to the 20,000
I've already referred to, will require some kind of housing
assistance, whether it be temporary shelter, whether it be
scattered-site housing, whether it be rental assistance so that
they don't lose their apartments and become homeless, or whether
it become the more concerted types of facilities which I won't
spend much time on today because I'm sure others have already
spoken to you about it, at the end of continuum of care, the
health residential facilities, the HRFs, the AIDS-related ICFs,
the AIDS-related skilled nursing facilities, and, of course, the
acute-care beds.

I am here only to talk about those who are actually in
need of homeless provisions, shelter. According to The New York
Times of April 4th, there are now, in the city shelter systen,
and this excludes our shelter system of over 150 church and
synagogue shelters, over 2,000 of those who are actually homeless
who are in general shelters where they get no special care for
their particular condition, particularly, if they have AIDS-
related complex.

104

 

 
 

 

I might tell you that the city excludes any help for
those who are actually homeless, except those who can show by
documents from physicians that they actually have full-blown
AIDS. That excludes those folks who because of ARC can hardly
function, cannot keep their job in order to pay rent, in order to
pay health insurance, and that is a crucial period of their life,
because those are the ones who will most likely become homeless
and who we will have to provide for. ‘

Very briefly, we have to find a new model below the
HRF, ICF, SNF model for temporary care, not a shelter, a
temporary facility that also combines a continuum of social,
Clinical and, yes, drug rehabilitation services, since the
majority of those now coming down with ARC and AIDS in New York
are IV drug users. We have to find a new model for that. One
does not exist.

The McKinney Act does not specifically provide for
that now. I would urge this Commission to liaise with those
folks who are now fashioning the new McKinney Act bill to provide
specifically for housing and temporary facilities for PWAs and
PWARCs, not let it go the ordinary process of leaving it up to
the counties, states and local governments to decide with one pot
of money whether they are going to put some of it towards PWAs or
PWARCs, because I will tell you that our city yesterday issued
its five-year plan, and in our estimation it does not provide for
one tenth of the need that we are going to see to provide
housing, shelter, care for PWAs and PWARCs in the next three to
five-year period.

Unless the federal government takes the lead in
fashioning programs, and legislation, and the programs that come
from it, such as, the McKinney Act, it's going to take far more
than the money that's in the McKinney Act to do this, as I'm sure
you well know by now, lest the federal government takes the lead,
the cities and the counties are going to be late in responding.

We are already very far behind the eight ball in terms
of providing these kind of facilities for those who right now are
actually homeless. We're talking about 2,000 to 3,000 in New
York City alone who are in huge shelters where they get no help,
and no care, there are no sanitary facilities specifically for
them, they are in many cases sleeping in a bed right next to
somebody who has tuberculosis. We have a huge problem in our
1,000-person armory shelters of tuberculosis, which we do not
, seem to be able to control right now. This is an opportunistic
disease which particularly directs itself against PWAs and
PWARCs.

So, two other programs besides developing and funding a
temporary facility as an alternate for general shelter, not only

105

 

 
 

 

in New York City, but throughout the country. And very quickly,
one is the scatter-site apartments. My good friend Mr. Stimpson
here referred to the part of the McKinney Act that talked about
the Section 8 mod rehab and the rental certificates, but again,
it's not targeted to help PWAs and PWARCs. What little there is
presently in the McKinney Act is out there to address the entire
homeless problem.

We have asked for a crash program from the City of New
York, none of which has been granted, either in their latest
budget allocations or in the five-year plan issued yesterday,
which would provide for a set aside of housing authority, that's
public housing apartments, 1,000 of them, and 1,000 of renovated
city-owned apartments. This is the crash program for PWAs who
are not yet, and PWARCS who are not yet, at the level where they
have to go to a skilled facility, or an ICF, or even an HRF.

The city's latest plans provide no renovated city-owned
apartments, no publicly assisted apartments. I would suggest
that not only the McKinney Act, but also in the other HUD
programs, that the federal government look at a mandatory set
aside percentage. All those projects in cities and metropolitan
areas that have this problem in a major way, certain percentage
of the units produced should be set aside for PWAs and PWARCs,
and that's what we would call leadership.

Last, but not least, there is a Rental Assistance
Program in New York, but it hardly reaches more than 500 PWAs and
PWARCs, and there's a very simple reason for that. Nobody knows
anything about it. Most of the doctors who have almost
exclusively PWA and PWARC patient loads would not know where to
send one of their patients who was about to lose their home for
rental assistance. It has been kept a deep, dark secret, and I
might also say, that also applies to social -- major social
service agencies in our city. They, at the present time, do not
know where to send these folks, and I might also say that people
with AIDS-related complex are not eligible at the present time. '
And, you are talking about ten times the officially restrictive
diagnosed PWAs. It's a very difficult thing to work with that
restrictive diagnose.

So, we would ask for an expansion of that program,
again, the federal government to take the lead, and I think it's
basically a HUD program. When you get into those other
facilities, ICFs and SNFs, you are talking more HHS, but in this
area you are talking HUD primarily, and they should take the
lead. Naturally, there is going to have to be services
connected with this, a continuum of services, even at the early
stage, social, clinical, and, as we said before, most important
at this point, and, perhaps, this has to be factored into the new
McKinney Act, drug rehabilitation services. Thank you.

106

 

 
 

 

CHAIRMAN WATKINS: Thank you, Mr. Smith.

CHAIRMAN WATKINS: Mr. Stoffa?

MR. STOFFA: Admiral Watkins, members of the
Commission, I thank you for inviting me here today. My job is a
little bit easier, in that the people who have testified before
me have outlined many of the things that are required in terms of
housing and housing-related issues for people with AIDS.

Philadelphia Community Health Alternatives/The
Philadelphia AIDS Task Force is the fourth oldest AIDS service
organization in the country, created in 1982 as our physicians
began to see this disease as physicians in New York and San
Francisco did also.

Over the course of the last five and six years, I
often say we can probably write volumes on how not to do this,
and, certainly, in the course of that action, we've learned an
awful lot.

My own background is new to this. I've been at this
about 18, 19 months now, probably the last person on earth who
ever expected to be involved in AIDS service work. I worked
with juvenile delinquents, and I've worked in large institutional
settings. I've put together community day treatment programs,
organized shelters for the homeless, ran a drug and alcohol
mental health treatment center, and worked as a college
professor, as an academic.

In taking over an AIDS service organization, and being
involved in what are the many problems for people with AIDS, you
hear about the many types of housing that we talk about, ranging
from programs for infant babies, to hospice care at the other end
of the spectrum.

I've invited or urged the Commission to invite my
friend Clarence Cain here today, not because Clarence is special,
but because Clarence is typical of virtually every single person
we deal with. The fight in Philadelphia has been a tough one.
It's been a long road, and it's a fight that still continues
today. It's not over. We have a commonwealth, the Commonwealth
of Pennsylvania, and a government that does not care about AIDS.
The total commitment of the Commonwealth of Pennsylvania to the
problem of AIDS in our state is $350,000.00. That's disgusting.
We have a city government that's developing programs for
planners and anaiysts, planners and analysts. We get 14 new
cases every week. Eight of our clients die each week, over one
per day.

As I road down on the train yesterday and sat in the
hotel last night, I began to think about the many things that I

107

 

 
 

 

should say, and I probably a dozen times began to write out a
statement and figure out what I would say to this Commission, and
talk about the many types of housings, and the frustrations, and
I could come here today as an angry person, as an administrator,
a person who has to deal with the frustrations of the inability
to get liability insurance for my houses, the frustration of not
being able to get Workmen's Comp insurance for my employees, the
frustrations of not having enough money. A program that was
created for us gave us a total of $160,000.00 to create four
homes and 25 beds and fund that for an entire year, $40,000.00 a
house, having clients that look at you as the professional, and
as the person who is supposed to have the answers, and not having
them, being the person who is supposed to be able to provide
services and not being able to provide them.

In the City of Philadelphia, not one in-patient bed
exists for a person with AIDS who requires drug and alcohol
services, who requires mental health services. Not one private
nursing home bed exists in the entire Delaware Valley. I had the
opportunity several weeks ago to speak to a statewide coalition
of private nursing homes. Not one person in that room would
accept a person with AIDS.

There is a very human quality about this, and as I
began to look through the statistics of our program over the
course of the last 16 months, we had 34 people go through, 32
people with AIDS, one family, and 14 of those people are left
today. That meant we lost one person every three weeks.

What's that experience been like? I often tell these
stories, and people look at me and say, "Boy, that can't happen,
not in this country, not today," you know. But, the reality of
housing for people with AIDS is the indignity that people suffer
in being people much like my friend, Clarence Cain, who never in
his life dreamed of being on public assistance, college educated,
hard working, determined, good job, and in a matter of weeks
reduced to matters of public welfare. The horror of having to
sit down with people and explain to them that the only way that
we can provide them basic medical care is to bankrupt then,
reduce their assets below $1,500.00, and show that we can make
them matters of public welfare.

It's not having programs, or the ability to provide
things for people as they require it. It's trying to provide a
home atmosphere with some dignity. And, it's the reality of
knowing that as a provider the public perception, the public
policy that's been created has been one of "out of sight and out
of mind," the horror that our clients endure.

We talk about the problems in a house, beyond the
liability insurance, and all of the licensure issues, and that's
been a classic debate. How do you license these things? The

108

 
 

 

~

Department of Human Services licenses group homes. The
Department of Health licenses health facilities. What would you
call one of these things? Is it a health facility, or is it a
homeless shelter? Well, it's a little bit of both, and that
problem in itself creates havoc in terms of securing insurance,
all kinds of problems thereafter.

For the people who live in our homes, I'm not sure how
to develop a group home model for people with AIDS, in that they
have very little in common. The social dynamics, and I can get
into an academic analysis of the social dynamics within those
homes, what it is like to be with four other people, five other
people, much larger facilities in New York and San Francisco,
where, in essence, people are together and watch each other
deteriorate.

But, what I've seen is the horror in our own program
for the clients, and these are things that have happened in just
the course of the last year. At 3:30 in the morning, he was in
respiratory arrest, lying on a bathroom floor, with two city
paramedics standing over him saying, "Take a taxi to the
hospital," not even opening their equipment boxes, putting it
back in their car, in their truck, and driving away. I took that
man to the hospital. He was admitted.

The horror of being called out to a house at 3:30, 4:00
o'clock in the morning, being told that one of your clients is
about to die, and the realization that in the course of the
paramedics arriving at the house, and beginning to treat him, as
they moved him from the bed to the gurney he died, and they
dropped him on the hardwood floor.

As I drove up to the house, the paramedics were
driving away, and we had just given AIDS training to our police
department, we had seven police cars in front of the house, and
all of the police officers were wearing their rubber gloves and
masks, standing in the middle of the street and trying to
convince them that inside the house on the third floor it was
very difficult for the AIDS virus to jump out and get then. But,
the reality then of going into a house to find out that everyone
was leaving, and what they left me with was a body on the floor,
and our staff.

Imagine, if you will, not just the horror for the
person who has died, the indigence of being rolled up in a piece
of canvas and thrown in the back of a truck, and that happens
today, the reality that the medical examiner's office does their
death certificates over the phone, the horror of knowing you
can't move that body until you get a death certificate, of having
to endure 13, 14, 15 hours before that can happen. Not just the
indignity for the person who has died or who has suffered that,
imagine, if you will, what it's like to be one of the four or

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five other people in that house to watch all that happen. Worse
case scenario, to be in respiratory arrest at 3:00 o'clock in the
morning, and to dial 911 and expect them to be there, and they
come and they leave.

I could go on forever with these stories. Our
programs have gone from families, to bearing an eight-month old
baby, to women, and children, and all the problems that we've
talked about that we need to plan for. We seem to always end up
planning for yesterday's crisis when this disease is out in front
of us.

The community programs that do have to be developed are
designed to provide dignity in housing. The concept of using
Section 8 and developing programs where we keep people in their
homes is enormously less expensive. If that's the only way the
people understand this, it's enormously less expensive, providing
more dignity for people in terms of providing housing-related
services.

To say we know what we are doing is wrong. We've all
kind of stumbled through this, as most have with this disease,
but we continue to try, and I guess I'm here to say that we'll
continue to try, that it is easy to get bitter, it is easy to
give up, but the challenge is for something to come out of this
Commission.

I speak before many hearings, before many commissions,
and give a great deal of testimony, and the challenge that I
leave is the same, that this not end up on tape recordings, or
bound in a volume that's found on someone's shelf, but, in truth,
is translated into what can be a coherent national policy that
allows us to provide services to people with AIDS. Thank you.

CHAIRMAN WATKINS: Thank you, Mr. Stoffa.
CHAIRMAN WATKINS: Ms. Stone.

MS. STONE: Thank you, Mr. Stoffa. I'd like to thank
this distinguished and compassionate Commission for inviting
God's Love We Deliver to Testify before you this morning.

Our work is about making it possible to keep people at
home. We serve homebound people in the last six months or so of
their lives with AIDS. In most cases, the clients we serve would
be institutionalized were it not for our meals.

Let me tell you what started this work. I was a
hospice volunteer in New York City at Cabrini Hospice, and sent
to deliver a bag of food supplies to a man with AIDS. In the bag
was soup mixes, canned fruits, dried pasta, things like that, but
the client, Richard, was bedridden with very severe KS lesions on

110

 

 
 

 

his feet. He had also only a hot plate in his apartment, and
after two years of unemployability he had absolutely no cash.
So, it wasn't about calling our for Chinese food.

I want to stress that this had been a successful,
highly employed actor, someone who previously took very good care
of himself. He was unable to use what I had brought him, and he
was desperately hungry, and he was frightened, and he had called
everyone there was to call in the city directories. He had
called all the gay agencies, city agencies, state agencies,
religious agencies, to find out whose job it was to feed people
in his situation, where was Meals on Wheels for someone homebound
and bedridden with AIDS? He discovered that it was nobody's job
to feed people in his situation.

When I saw Richard's dilemma, I realized that he must
be representative of hundreds of people who were in bed, without
money, without ability to feed themselves, and I was appalled at
that sight. We have made it our job to feed people in that
Situation. We began with absolutely nothing but that
determination, to feed anyone at all who applied to us for meals.

In tne beginning, our first clients were self-
referring, although now we hear from the social service
departments and discharge planners of all the major city
hospitals, and all the gay agencies, and all the agencies who
serve people with AIDS in New York.

But, in the beginning, we purchased meals and also we
cooked food in our own homes for people with AIDS who phoned us,
but that immediately became impossibly expensive. And so, we
hit on the idea of asking restaurants to donate food.
Restaurants, good ones in New York city have got plenty of food,
and it's not expensive for them to give it away. And so, we
asked for freshly cooked, cooked to order, first class meals, and
we got, surprisingly, almost unanimous cooperation from the very
expensive restaurants that we requested food from. We went on
for about a year and a half in that manner, serving just under
700 meals to individual clients at home, each meal delivered by a
volunteer, picked up at a restaurant and delivered by a
volunteer, so this did not require any funding.

Our initial support came from a donation can that was
created by one of our friends in a restaurant, a coffee can with
a piece of paper around it that said, "Hot Meals for Homebound
People With AIDS." People put their quarters, their nickels and
their dimes inside. Our work is supported by ordinary human
beings in New York City who care. We operated that way for
about a year and a half, as I said, and then we opened our own
kitchen in a church in New York City. Since that time last
August llth, we have served over 9,000 meals to homebound people
with AIDS.

lil

 

 
 

 

We'll be going into another church facility in the
Bronx next month. We will be serving whole families, children,
mothers. We'll be in Brooklyn in August, and, hopefully, here in
Washington, D.C., at the Westminster Presbyterian Church, by
early next fall. Our commitment and our pledge is to meet this
need wherever it arises, as Mr. Stoffa points out, and as
everyone else has said too, we are always playing catch-up ball.
We can never be ahead of the need. There are hungry people at
home right this minute who are not expecting our van, who don't
know about us yet.

Quality of life is the issue that God's Love We
Deliver addresses. We cannot do more than see that each of our
clients has the best experience of this day that he can. A great
deal of love goes out of: our kitchen in the food and as the food.
Our clients tell us that it is the love which nourishes them and
gives them hope. One of our clients said, "I don't know how I
would live without God's Love." I think that's pretty good.

This is Viktor Anderson. He's going to give you some
statistics about our work.

MR. ANDERSON: I'm going to try to give you
statistics. Thank you very much for having us here. I'm Viktor
Anderson. I'm the Director of Operations of God's Love. Our
financing has been --

CHAIRMAN WATKINS: Would you let me have your name
again, please?

MR. ANDERSON: Viktor Anderson.

Our financing has been equally divided until recently
between individual contributions, the donation cans and checks
that come in weekly unsolicited, which accounts for 33 percent of
our money; corporate and foundation support, 32 percent; and
benefits, fund raisers, 35 percent. We received our first
government money this year from the State of New York, their
Nutrition Assistance Program.

In eight months, since we opened our first kitchen at
West Park Presbyterian Church on the upper west side, the numbers
have increased 35 times. When we opened the doors last August,
we were serving six people. There are now 207 people who are no
service in Manhattan.

We're opening a kitchen in the Bronx on June the 12th -
- June 15th, at St. Peter's Episcopal Church, and on September
the lst at St. Luke and St. Matthew's Episcopal Church. And, if
things go as expected, in October, here in Washington, D.C., at
Westminster Presbyterian Church.

112

 
 

We have also begun a cooperative venture with the
Archdiocese of New York, and working with them in housing
homeless people and helping through the food aspect, feeding
those homeless people with AIDS.

Nutrition is a primary defense against
immunodeficiency. Attached to our testimony is an analysis of
our meals, which are so beautiful and wonderful besides being
nutritional, done by the City Health Department. Our meals not
only meet one third of the daily minimum requirement for all
nutrients, it exceeds it in most cases.

The meal itself is very substantial and large, and a
random survey of our clients shows that in most cases it
provides or two and a half meals for them. It consists of a
soup, a salad, an entree with a vegetable and a starch, anda
dessert, and it's all homemade from scratch. Pamela, who is our
chef, who is here as well, does great things. All the vegetable
stock is cooked from scratch, all the chicken stock from scratch.
We have a corps of 120 dedicated volunteers who come daily to
chop vegetables and wash dishes and deliver the food.

One of the things that we find that we are doing more
as we grow is providing respite care in the home for those who
are lovers, friends, families, who are sort of primary
caregivers to the people who are homebound with AIDS.

Recently, we had a telephone call, again this reflects
the great cooperation we have with the restaurants in Manhattan,
we had a telephone call -- our meals go out at 10:00 o'clock in
the morning. They are delivered at lunch time. So, if we get an
emergency in the afternoon, we depend upon our restaurants -- we
had a telephone call from a friend and we went to look the
Situation over. We found a woman who has AIDS who is confined to
a wheelchair, who has an alcoholic husband, and who has a ten-
year old son, Damien, who really is the head of the household.
And, Damien was opening a can of cold ravioli and feeding his
two-year old brother. That was the extent of the food in the
house. The woman hadn't eaten in quite a while because she
wanted to see that the children ate, so we called Summer House
Restaurant, which is at 86th and Madison, a very fine restaurant
on the upper east side of New York. They not only produced
beautiful meals to take to the family, when they discovered the
situation they opened their refrigerators and sent a gallon of
milk, a five-pound tub of peanut butter, bread, cheese, tomatoes.
It's that kind of love that we experience on a day-to-day basis
that we are able to share with people.

As we go into the Bronx, presently 18 percent of our
clients are HIV -- former HIV drug users -- as we go into the --
HIV -- IV drug abusers -- as we go into the Bronx, we have

113

 

 
 

 

established a creative relationship with Albert Einstein College
of Medicine and with Montefiore Hospital, and we have a liaison
established whereby we will be working directly with them through
their drug rehabilitation programs. And, particularly, their
Methadone maintenance programs.

One of our clients said that "AIDS is a catalyst for
love." It is certainly -- it's led a lot of us, like myself, to
be more responsive, and more human, and more caring. We've
asked one of your staff people to read a letter that came to us
from a mother in Oklahoma, thanking us for our service to her
son, because I can't get through it.

MS. DUFOUR: "January 29, 1988 -- Dear God's Love We
Deliver Persons: Your life sustaining love and meals enabled
Robert to do the things he wanted. First of all he and his Dad
made the trip to Oklahoma on December 20th. I followed the next
day because we were expecting the movers to come pick up Robert's
furniture on the 21st. I am sorry to say that the trip home took
a lot out of Robert and he gradually kept going down hill. He
made it through Christmas - Birthday - New Years (even faced the
fact that Oklahoma University had played very badly in the
Orange Bowl.) On Sunday January 3rd we could tell he was
slipping into the final phases. I washed and ironed the clothes
he had come home in since everything else was still enroute. On
Monday January 4th he asked to turn off the T.V. and let him
alone so he could get to work. At 1:11 that afternoon he closed
his blue eyes for the last time and took his last breaths. But,
he did it his way. He was at home with no artificial life
sustaining IV's. He was completely at peace with the world and
loved all of us. Even though we know he was in a lot of pain, he
never complained, not one word. He was a sweet and gentle person
who loved life and when he realized he could not ever return to
that life he wanted to go on so we could get back to living our
life.

We miss him very much, but know he has gone on to open
the Golden Gates for us when our time comes.

Thank you all for your love and help. I never could
have made it through those days without you." And, she ends the
letter with, "Keep those meals a-rolling'. Love, Alma & Jim
Shuman"

CHAIRMAN WATKINS: Thank you very much, Ms. Stone and
Mr. Anderson.

CHAIRMAN WATKINS: We'll be opening for questions now
from the Commissioners, but before we start that, I'd like. to
start with Cardinal O'Connor, I'd like to have one base line of
reference, Mr. Stimpson. If you could either provide it to us
now verbally in general terms, and then, perhaps, get some

114

 

 
 

 

specifics later, but I'd like to see the HUD funding line for the
past ten years in some kind of real-dollar form, either '87
dollars, '88 dollars. Then, I'd like to see any delta
differential that has been applied to that, specifically focused
on the AIDS epidemic, that is, if anything changed or brought new
focus and emphasis. You mentioned a number of programs. I don't
have any base line of reference of when those were put into
effect. Are they old programs, so we need to really see a solid
funding track with some kind of constant dollars, so that we can
have a feel for just the degree to which HUD has been funded for
a variety of programs, and then see what changes were imposed on
that line as a result of the AIDS epidemic. Can you give us any
feel for that now?

MR. STIMPSON: I would have to provide the funding line
for you. For the record, in general, I'd have to talk at the
moment in terms of budget authority.

The budget authority of HUD, let's say in 1980-'81, was
around $30, $31 billion. That's the amount of a new authority
that HUD would request from the Congress for new units of
housing. It is now about $9 or $10 billion. However, I would
also need to attach to that the amount of funds that HUD spends
annually on subsidized housing, which in 1981 was $5 billion and
currently is $10 billion. But, I will provide that for the
record.

CHAIRMAN WATKINS: Well, I want a complete record, so
if I have not asked the question --

MR. STIMPSON: vYes.

CHAIRMAN WATKINS: -- and you find that to put it in
balance I need to have other data, I would like to have that.
Otherwise, I have no base line. We have had some compelling
testimony from very competent witnesses, study groups and the
like, who have shown us the correlation between the so-called
"under class," as they've defined it in a variety of ways. It
seems to make sense, certainly, and get right in the middle of
the homeless area, and how the direct overlay with the AIDS
epidemic applies, particularly in New York, Newark, many other
cities in the country, Miami and the like.

So, we know that the linkage is there. We have to
focus on the HIV epidemic. This is our job. Nevertheless, we
recognize that when we focus on that and expose a Pandora's Box
in the area of homelessness, that we have only touched the tip of
the iceberg. We were told by Doctor Joseph in New York, for
example, that while they put 30 persons with AIDS, or with the
HIV, back on the street at night, because there is no place for
them, they also put 1,200 others with infectious diseases and
other things that have no home either.

115

 

 
 

 

So, we have to keep in perspective on the Commission
all aspects of the homeless, and what we might do through the
lens of the HIV to start a movement going to address the issue.
We know it's a real issue, and there's a variety of options, and
HUD isn't the only -- we understand you are not the only player
in the game, but you are a key player, and you've got some
provision under the law that we might be able to lean on and
assist.

So, we look at this as an opportunity, as well as a
tragedy, and I think if we don't do that we're missing an
opportunity in the nation to take advantage of this situation to
get our act together in a variety of areas. And, certainly, we
feel this is a key one.

I'd like to turn that -- if you'll provide that, and
we'd like to get that fairly soon, Mr. Stimpson. That should be
something you could put together within a very short period of
time once you return?

MR. STIMPSON: Yes, we can provide that very quickly.
CHAIRMAN WATKINS: We'll follow-up on that with you.

I'd like to open the questions now with Cardinal
O'Connor, and I'd also like to acknowledge the tremendous role
that not only his Archdiocese but the church organizations
nationally have played in dealing with the homeless issue.

They are faced with incredible odds, and they are
doing work that is yeoman in nature and that we should be
grateful as a nation that the churches have picked up the burden
of responsibility so well, and, certainly, in New York, I think
that the Cardinal heads up one of the most aggressive, and
sensitive and responsive organizational arrangements that we
could possibly find within the church system to be sensitive to
not only the homeless but the person with AIDS.

So, I'd like to, because we have excellent witnesses
this morning giving us a very somber presentation about this
situation, turn it over to him and, perhaps, he can field some
questions to you that would hone right in on some issues that
this Commission might take under consideration for our final
report. Cardinal O'Connor?

CARDINAL O'CONNOR: Thank you for your very kind
remarks, Admiral. I am deeply grateful for the testimony that
we've received today. Of the hearings that I've been able to
attend, what has been said here is head and shoulders over much
of what we have been engaged in, in terms of importance and in
practicality.

116

 

 
 

 

I have three questions which I will make brief. I
could address all of you and share with you, for instance, Mr.
Stoffa, some of the stories that you have presented. In your
expression of frustration, you have probably brought into focus
that which we've encountered most in all of these hearings, just
the frustration, what can we do, how can we cut through the red
tape and so on? But, rather than simply match stories with you,
I have a quick question for the folks from God's Love We
Deliver, and then two for Mr. Smith.

To you folks, you're among the very few that I have
heard talk about nutrition, and our experience in St. Clare's and
other places has been, my personal experience with more than
1,000 persons with AIDS in the hospital, has been that the
overwhelming number come in very, very badly malnourished, and
this is what you must work on. Virtually, all have a pulmonary
infection of some sort, tuberculosis, pneumonia and
malnourishment.

My question is, have you been developing any data, have
you been trying to correlate these things? This could be of
significant help, I think, to the Commission.

MS. STONE: Thank you for asking. We certainly have
been keeping extremely careful records, and I must report that we
see incredible improvement in our clients. We work closely with
St. Clare's by the way, and with Mr. Yezzo there, to make sure
that all discharged clients of St. Clare's are fed by us
immediately upon discharge.

We have people walk into our kitchen, having taken
themselves off our program, who say, "I was in bed when you met
me. I could not get up, and now I'm able to go back to work."

It is awesome what a decent meal will do, and it has to be a
meal, by the way, which is so enticing that people want to each,
because the medications to which our clients are subjected leave
nasty tastes in the mouth and make it -- unless we have lasagna,
or roast veal, a very special meal, people don't want food, and
they opt to die, really, because of lack of interest in what they
are presented with.

We see incredible turn around in people. We see
weight gains of 15 pounds in two weeks, and we're keeping track
of it, of course.

CARDINAL O'CONNOR: If the Chairman concurs, I would
appreciate it if you would provide this Commission with whatever
data you have.

MS. STONE: We would be grateful for the opportunity to
do so.

117

 

 
 

 

CARDINAL O'CONNOR: It has to be explored.
MS. STONE: Thank you.

CARDINAL O'CONNOR: Mr. Smith, you possibly know more
about housing than anyone in the United States. Housing the
homeless, I'm well aware of your efforts to coordinate church
activities and others in New York, including those of us who are
at times resistant and recalcitrant. But, we admire what you do.
Because of your experience and knowledge, therefore, I ask you
these two questions, then I'll be finished.

It seems to me that in listening to you, and in having
just read that same report to which you referred from the City of
New York, and being quite concerned that this is all we can offer
in the five-year plan with, again, a re-emphasis on clean needles
and things of that sort, that I think we're putting the cart
before the horse, but meeting the frustration Mr. Stoffa has
cited and others, are we really going to be able to do anything
significant without emergency legislation that cuts through a
tremendous amount of the very understandable and important road
blocks to just promiscuous government spending and so on? Is it
your feeling that emergency legislation is needed, or to put it
in another way, can we get through at all without it?

MR. SMITH: First, might I say that for the rest of us
in the room, that one of the prime movers in the founding of our
modest effort was the Archdiocese of New York, your predecessor,
the late Cardinal Cook who we revere, and without the continued
cooperation and us working daily with your homeless ministries,
that thousands of people would not be served. I think the
majority of the churches in our network, Homeless Assistance
Network, are from your Diocese and the Diocese of Brooklyn, but I
think your Diocese outnumbers the Diocese of Brooklyn.

You put your finger, in my estimation, right on it.
Precisely, what comes out of that report is that in terms of
housing and related services, nutrition, home care, social
services, and probably drug rehabilitation, we are not treating
it like that word that is written down there right below you,
Admiral Watkins, “epidemic." We have an epidemic, and we have to
treat it like an epidemic and that requires emergency measures.

What comes out of that report, Cardinal, I'm sure
you've got the same feeling, is, yes, you know, progress is
incremental as 400 to 500 more per year that we're going to
provide these housing and housing-related services to. But, in
terms of what's coming down the pike that I tried to lay out in
the beginning, it's nothing. So --

CARDINAL O'CONNOR: Well then, let me ask you the hard
question. I think that when we talk about homelessness in

118

 

 
 

relation to persons with AIDS, or inadequate housing, and the
very severe problems of having to turn people back into the
streets, such as Doctor Joseph mentioned, that I've seen very
frequently, I think here, again, we're maybe putting the cart
before the horse. Sociologically, it would seem to me that money
spent on housing could prevent AIDS to a considerable degree.

A tremendous number of people who are living in
hopelessness and in misery are turning to drugs. Many who are
living in the streets turn to drugs. So that, if we would
refocus our sights and recognize that the potential of decent
housing in which people can live as dignified human beings could
impede a lot of AIDS in the future. In the long range view, I
think this could be tremendously helpful.

So, my hard question to you is, could you yourself, and
with the resources that are available to you, design proposed
legislation, and again, if the Chairman concurred, present it to
this Commission as a possibility, as a model?

MR. SMITH: If I might ask for a little clarification
there, to address the homeless problem or the lack of low-income
affordable housing in general, or --

CARDINAL O'CONNOR: With specific emphasis on persons
with AIDS. You are not going to get emergency legislation
otherwise.

MR. SMITH: To be very frank, that would have to be a
concerted collegial effort. It would take far more than my
capabilities, and with all due respect to my good friend, far
more than Jim Stimpson's, and with all due respect to everybody
on this Commission, far more than those on this Commission. I
think it would take, not only the highest amount of expertise,
but absolute commitment, and I hope that that somehow or other in
the mandate that you have received from the President, that will
permit you to rest or obtain that kind of commitment from HHS,
HUD and several other organizations that are combined, for
example, in the McKinney Act. I'm not suggesting that it be
limited just to the emergency end, transitional nature of the
McKinney Act. The McKinney Act, basically, again deals with
emergency and transitional and very little permanent. It wasn't
designed for that. The permanent problem is going to have to be
a collegial effort of a lot of people with a lot of expertise in
a lot of fields, as I think, Cardinal, you touched on a little
bit there, and it was touched on also here by Mr. Stoffa and
others. We are not dealing with a recognized model that fits
into any well-defined funding stream, or even licensure down at
the end.

Certainly, on the higher levels, we know that. The
HRFs, the ICFs, the SNFs, those will all have to be modified,

119

 
 

ae

and a lot of people are spending a lot of time trying to do that,
both, I think, on a federal level, I know in New York State that
I've spent a lot of time with Andrew Cuomo, for example, trying
to see, and he's brought it to the state people, the Housing
Finance Agency people who relate to the federal people here in
that area, to see if the ICF model can be so modified that what
you are providing is residential care that is not institutional,
but you can still take advantage of the health aspects of the
ICF, and, more important, the funding stream.

Because, Cardinal, you give me an opening to make one
more point, this is going to be expensive. It's not going to be
a matter of just taking a chunk out of the 202 program, or the
block grants, or the McKinney Act that's already there and
saying, well now, we'd like to see you, city, states and non-
profits, Archdiocese and Federation of Jewish Philanthropy,
submit proposals for a chunk of that.

There is going to be a lot of pain here, and we've got
to be ready to face the pain, and the sooner that we do it, the
more we're going to be able to save lives and save a lot of human
suffering.

I would be -- well, I think everybody here -- but, I
particularly would be willing to join with -- if you would want
to call it an emergency drafting task force group, whatever name
that this Commission would want to put on it, to produce
something like that.

Just let me add one final thing. After I leave here, I
am going up to the Hill to talk to the staff of several
congressmen, who play a key part in fashioning the new McKinney
Act proposals, and it just happened, I was going to come down and
talk to them anyway on the homeless in general, but I mentioned
that I was testifying before this Commission, and one of them
said, "Yeah, you know, we've been thinking about, you know, that
we don't have any piece in that bill directed towards PWAs." So,
he said, "Do you think we could chat about that?"

I said to myself, yes, I said, but I'm sure there are
other people by now who must have come to you and spoken to you
about this, since this is the lead piece of legislation that
came from Congress from sitting on the steamed grates with actors
and congressional leaders and all the rest. I'm sure that there
is something in there, but, apparently, there isn't.

I guess the answer to the question was, really, yeah,
I'd be delighted.

 

CHAIRMAN WATKINS: As a follow-on, I'd like to say
that we're going to continue to work with Mr. Smith, and we will
be very interested in the spectrum of options that you have

120

 
 

 

outlined here, everything from early intervention for people to
stay in their homes, to do whatever is there, all the way up
through the variety of options. Because, I think what we need

to do is package up, at least some demonstration projects in
highly hit areas that really can begin to demonstrate that we can
do these things, that there are optimum cost approaches to this,
much as this in health care delivery in itself. We've been
through that sequence.

So, they are all tied together, and one of the
functions of the Commission is to integrate these things so that
we don't just throw money at housing over here, and forget all
the other associated support functions that have to go with that,
including some kind of approach to make sure the environment is
suitable for human dignity that goes around. And so, we have so
many things to consider, so it is very important, I think, that
we find the so-called model that you were talking about, but you
have it in mind, and it can be a variety of options, and I think
it will be a function of the area as well.

And so, I think what we want to do is, work with you,
Mr. Smith, in the very near time frame, and I think we're doing
that, and get some of your ideas so that we can put in the best
kind of report here in a few weeks time. And, we don't have to
have everything answered, but we do have to have the thrust of it
so that you, in the business down at the grass roots level, will
look at that and say, somebody is listening. We have a chance
now to put something together and demonstrate that we can,
perhaps, solve some of these issues in an integrated way, and not
so frighten the system that in a time of deficit we're trying to
demand something that we simply aren't going to get and raise
expectations. But, I think we can do some serious
demonstrations, and we can work with HUD and others that can
assist in this, and we will try to do that and package it up ina
way, at least at this point in concept, that it makes sense to
people like you that have come before us today.

MR. STOFFA: Admiral Watkins, one brief comment. It is
not just the concept of legislation, a broad range, or types of
housing that we're talking about.

We've also got to talk about a mechanism for the
delivery of those funds to community service organizations or
organizations that are providing those services. The business
end of what we do is that we can't provide services if the
repayment schedule is six and eight months behind where we are
at, and that is the kind of delays that we routinely have to
endure. We simply can't pay bills.

And, those funding mechanisms get lost through state
and local political processes, and I think mechanisms for
delivering funds are also crucially important.

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CHAIRMAN WATKINS: We understand. We faced that in
many other issues before the Commission, particularly, with
community-based organizations who don't see the distillate at the
end of the pipe. They see a lot of stuff going in at the top and
very little getting to them.

And so, we're going to try to come to grips with that
in a whole range of areas in our report.

Mr. DeVos?

MR. DevOS: I just have one question, and as we've ©
listened to a variety of people deal with hunger, or
homelessness, is there a central point in a city like New York
where we have a record of every person with AIDS, or with ARC, so
that you know and they are followed, and that you can pursue
that.

You know, every little group is doing a little thing.

MR. SMITH: There is nothing like that at all. For
example, the estimate of those with ARC is certainly not
scientific, but it's the best available.

There is the records on those who have full-blown,
diagnosed, certified within the very limited Atlanta definition
of what it is, is there. The central place, the best place you
can get it is the Health Department itself, that monitors the
doctors and the hospitals and the other facilities, who then
certify.

MR. DeVOS: Well, we've heard a lot about case
management, and I'm just wondering if somebody in that city
Health Department is on top of it, follows each person, and
allocates their special needs to the private agencies, non-profit
agencies that are out there.

MR. SMITH: No, no, there's nothing like that. It
depends upon what need that you have, as to who you call.

MR. DevOS: But, you've got to initiate there. There
is nobody following on that. Your frustration is‘--

MR. SMITH: Yes, absolutely.

MR. DeVOS: -- where you work your way through the
government.

MR. SMITH: Absolutely. That does have to be

initiated, but it is even more simplistic than that. For
example, the city says that there is no cap on those who they

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will give rental assistance to in order to help them stay in
their apartments after they lose their job and their source of
income. That's what the city says, provided they are eligible.

Well, two things stand in the way there as to why
there is only 546 who are actually receiving it now, some figure
like that. One is that most people don't know where to go for
that. Never mind that the person who all of a sudden is hit with
the devastating symptoms of this disease, but his doctor doesn't
know where to go. To tell you the truth, I didn't know where to
go until very recently, and I just spoke to a priest from the
Archdiocese who happens to be heading up a very fine effort of
providing meals in Bailey House on Sunday, and he doesn't know
where to go. That's one reason.

The other reason is, that because people who have ARC
and not documented, diagnosed AIDS, I have, you know, an
official communication from the Human Resources Administration in
the City of New York here, who says that first they must show
that certificate that documents you as a person with AIDS. If
you don't have that, you don't get anything, and that's true for
the rental assistance program.

MR. DeVOS: Well, I'm concerned about it from two
standpoints. One is, how you proceed with these people in their
various stresses and strains, but the other one is, to prevent
the spread of this disease. Somebody has got to be tracking
these people and staying in touch with them and working with
them. And, I guess what you are saying to me is, there is no
central point that really stays on top of it.

MR. STOFFA: Mr. DeVos, as my agency also provides
testing, we've tested approximately 11,000 people over the course
of the last ten, 12 months. In the course of that, a major
component, we do anonymous testing, wetmake it free, available to
anybody who wants that, probably the largest component of that is
the post-test counseling. The largest component of that is
attaching people to the resources that are available, making sure
that people know what's available to them, how to access those
services.

And, in fact, we do provide a continuum of care in
that regard. We keep a lot of information as to who those people
are and where they are from, which allows us to direct services
in those areas.

We need to be doing a lot better job, and there's a
whole lot more we have to do. But, as was previously noted,
that the estimates in Philadelphia of up to 50,000 people who are
HIV positive is really a mathematical calculation. We, in fact,
don't know. But, the continuum of care, or the development of
case management services, is something that is happening today.

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MR. DevOS: Thank you.

MR. ANDERSON: I would say also it's more sort of ad
hoc, rather than structured. I don't know if that's good or if
it is bad, but it is ad hoc.

And, the way in which that occurs is that there is
obviously conversation occurring between, by people at this
table, where we service providers in the same city. So that,
there is an ongoing communication of, in our case, what are
services, and what the criteria are for the person being served,
and making sure that the hospitals, the Health Department, other
AIDS service organizations, churches, know about the service, and
getting the word out as best we can.

MR. SMITH: I am sure, for example, Cardinal, that you
were struck by, in that report, that many of the goals are in
forming non-profit service agencies, churches and synagogues, of
the programs that already exist, never mind the ones, that they
have to develop, and they said they are going to d velop to some
extent. Most people don't know where these -- how/you get a hold
of this help. {

CHAIRMAN WATKINS: Doctor SerVaas?

COMMISSIONER SerVAAS: Do any of you have a special
interest in alcoholics with AIDS? Is there, tn your -- that we
haven't touched on.

MR. STOFFA: My own background is somewhat unique, in
that I come from the drug and alcohol field, having run a drug
and alcohol mental health facility. The frustrations involved in
dealing with chemical dependency, and I'll include alcohol in
that, are enormous, in-patient beds simply don't exist.
Developing out-patient serwices are things that we can do, and
people with AIDS -- I often say that the need for diagnosis in no
way can force saint-hood on someone. Many people are involved in
at-risk behaviors which lead to them getting AIDS. They don't
suddenly drop those risk behaviors when they get that diagnosis.

t

For many people, the AIDS becomes secondary. In fact,
the alcoholic's goal is to get alcohol, as the chemically
dependent person is to get their drugs. That doesn't magically
stop with the AIDS diagnosis. So, one, it's predicated on the
fact that you do have people who want treatment. Once you have
people who want treatment, and we've made a distinction there,
you then have to be able to make services available.

Those services exist. We're not talking about
creating new mechanisms of service. We recently, in
Philadelphia, sued a major medical facility, a teaching hospital

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that refused to take one of our clients who was suicidal, simply
because they didn't want to put him into their unit. Making
those services available to people, access to existing services
is what we are talking about here, and I think this Commission
has learned at least enough to know that we don't have to create
special AIDS alcoholic programs, or special AIDS chemically
dependent programs. We need to educate people and make existing
services accessible.

DR. SerVAAS: Thank you.
CHAIRMAN WATKINS: Doctor Conway-Welch?

DR. CONWAY-WELCH: I think the Cardinal addressed my
question. I'd have one other question in relation to the issue
of legislation, and I guess I need to address it either to Mr.
Smith or Mr. Stimpson.

The concern about if there is adequate legislation on
the state level or the federal level to be able to help cut
through some of the problems that you are facing. What I'm
hearing is that there is not, and my question to you is, is this
more of a problem because of state legislation, or federal
legislation, or both, or is it something else involved there?

MR. SMITH: Well, our feeling is that the federal
government clearly has to take the lead. What happens to be
happening in New York State right now, maybe this will help
answer the question, is that because of the Governor's direction
in his State of the State Message on January, there is a high
level, ongoing task force that involves not only a few of the
non-profit agencies already involved in service models, either to
the homeless or to drug and alcohol abuse, along with
representatives of the major state agencies who deal with housing
financing, that is, financing special-needs, housing facilities,
the HFA, which has long done that, with their mental health,
health and so forth, in trying to devise the models of the more
concerted care when a person with AIDS or ARC can no longer
exist, for example, in their own particular home with home care
services brought in, but has to go to an -- well, just developing
HRFs. Now, they are also relating back to Washington to some of
the agencies to make sure that what they are developing,
hopefully, comes within the regs of the programs, for example,
that will get Medicaid reimbursement, because that's absolutely
necessary.

Perhaps, it should be -- not, perhaps, but my thought
is that generally, or a lot of people agree with it, that it
should be coming the other way around, that it should be -- I
mean, New York is doing it because of a special initiative and
because we've got 24 percent of the PWAs in New York City, but it
should be going the other way around.

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DR. CONWAY-WELCH: Thank you.
CHAIRMAN WATKINS: Doctor Walsh?

DR. WALSH: It seems to me that a tremendous number of
organizations are doing good work independently. I realize you
talk with one another, but it is very difficult to coordinate
both your solicitation of funds, your help and so on, and,
basically, what's coming across to me is that you are all trying
to do the same thing for that patient, in that, you want to give
them home, or, if not home, a type of institutional almost home,
like Bailey House or something that, care, with all of the
trimmings that go with what would be hospice care, in a sense.
When I say "hospice," I'm using it in the broadest term. In
other words, the ideal hospice care would give you home health
care, would give you nutrition, would give you food, would give
you assistance at home and the like.

And, I was also a little concerned, or more than a
little concerned, at the response to Mr. DeVos' question, that
you really don't have a handle on who these people are, who all
of them are. And, I wondered whether, particularly, I don't
think confidentiality becomes a problem with people with AIDS. I
think by that time, you know, I don't think that patient is
concerned with it.

People with ARC, maybe confidentiality is still a
problem, but I think somewhere along the line, we're not going to
solve this problem if we don't solve the problem of how do you
help people you can't identify? How can you cross the bridge of
confidentiality to give them assistance, and still wave the flag
of confidentiality, because the problem I think that you have in
state legislatures is that as big as the problem is the general
public still doesn't understand the enormity of the problem
because we have all kinds of classifications.

To me, I've been preaching for months on this
Commission that we ought to talk about seropositivity simply
because the number is so big. It will get somebody's attention.

But, I think that we have to find a way, and I think
that's what the Admiral is asking for, that's what the Cardinal
is asking for, that's what Rich DeVos is asking for, that each of
you are out there in the trenches, and we have got to find a way
to pull all these loose ends together. I mean, to me, the
stories that we hear are horror stories, really, of indignity, of
lack of humanity and everything else that goes with it, and we
see these efforts to help, who are trying to do their piece of
help. And yet, people are falling between the cracks, and not
just a few.

126

 
 

 

MR. SMITH: Well, Doctor Walsh --

DR. WALSH: How do we pull it together?

MR. SMITH: -- with all due respect, let me ask you,
how would identifying each one of these folks help in the effort
that you were involved in?

DR. WALSH: I think it would help to this extent, that
when you are asking for legislative assistance, or even major
private assistance, before you can do anything you have to know
the size of your problem. And, I think, to me, there will never
be enough help if we don't the enormity of the problen.

And, I think we've got to find a way to get across to
the public and to the legislature that this is not just a few
people's problem. It's the problem, as you said, the whole
State of Pennsylvania has that problem, not just Philadelphia.

MS. STONE: Doctor Walsh, I believe that until there
are protections in place on the federal level against the kinds
of experiences that Mr. Cain reported to us, you cannot expect
people to come forward and say, yes, I have AIDS, yes, I'm HIV
positive, yes, I want help. The fear that is at the root of the
confidentiality issue is founded, not unfounded. All right?

DR. WALSH: Oh, no. I understand that. I understand
that.

MS. STONE: If that strong protection exists, which it
does not, then New Yorkers don't have to fear losing their
apartments.

The reason our vans are unmarked, and we don't have the
commercial license plate, which would allow us to park anywhere
with impunity, the reason we don't have that is, we cannot write
God's Love We Deliver on the side of the car, because our client
will lose his housing if we do that.

DR. WALSH: But see, this is what's perplexing to us.
We want to do something to help you solve -- to help, not you, to
help us all solve the problem, and it's very hard to get a handle
on it, and that's what we're asking for.

MS. STONE: I think you have to say that the problem is
bigger than bread box, you know, as we used to say.

DR. WALSH: Oh, yeah.
MS. STONE: I think it's big enough, we know it's big--
DR. WALSH: It's probably bigger than a cow.

127

 

 
 

 

MS. STONE: That's correct. It's bigger than an
elephant, it's big, and we haven't begun -- I mean, I don't think
that asking for, one thing, the outer edge, the outer limit is
constantly moving out. It's like the universe, it's constantly
expanding, so you cannot expect to say, ah, the problem is just
this big and no bigger. It's getting bigger even as we sit here
and speak about it.

DR. WALSH: I agree with you.

MR. STOFFA: For those of us involved, you know, in
testing, direct care housing, all of the components that we get
involved in, I don't think that we are adverse to counting
numbers when true protections exist to protect people's
confidentiality. We filed 72 class action suits last year.
Every single one of them involved the violation of people's
confidentiality, from physicians, to employers, to insurance
companies, in each and every one of those cases.

And, again, Mr. Cain is here today because, not that he
is an exception, but because he's typical. Those protections
have to be in place before we can employ that. I am not sure I
know the answer to that either, how to create those protections,
but at the same time, time in and time out, countless times over,
we've seen those protections violated that have resulted in
extremely adverse effects on people.

DR. WALSH: Sure.

MR. SMITH: Doctor, just let me make -- if the -- if I
can describe it as a zeal to identify those people who, as you
said, have not only AIDS, but ARC, is important -- just let me
analogize to the homeless situation, in general.

There is a wide diversity as to how many homeless
there are nationally. Mr. Stimpson's agency, four years ago,
said that there was only a quarter of a million to 350,000
homeless nationally. Several other national surveys, including
those made by our organization, and two other leading national
organizations dealing with homelessness, said it was in the 2 to
3 million range and going towards 4 million.

There is no way of reconciling those two figures at
this particular time, and yet, I would say that there has been
substantial movement, though not enough, in Congress, and at the
local level, to assist people that are homeless.

DR. WALSH: Then, what you are coming down to is just
the answer I'm looking for, and the answer, apparently, is, to,
you know, meet all the concerns we have, we have to find a way in
this Commission, using AIDS as a wedge, to solve the entire

128

 
 

 

problem of home health care and the homeless, and your people,
the people with AIDS, the people you are caring for, would fall
into the protection under that category. And, I think that this
is going to be a task that the next administration, whoever is
elected, is going to have to face, because if you are going to --

like, there's no question, we're all against discrimination,
there is no question if you don't feel it's appropriate or proper
to modify confidentiality for the reasons that you talked about.
This is why I'm trying to -- why I was bringing this out.

Then the problem is far bigger than people with AIDS,
and we have to solve the major problem, and the people with AIDS
would then be taken care of in the major problem of home health
care and housing.

MR. SMITH: With all due respect, I think that we can
do both. We can move on parallel tracks.

DR. WALSH: Yes.

CHAIRMAN WATKINS: Ms. Gebbie? I'd like to finish
this panel, if we can, at 10:45. We're going to start running
overtime here.

MRS. GEBBIE: I'11 try not to ask more than eight-
minute question then.

I'm trying to separate issues to be fairly crisp about
them. I think the issues around provision of services to
someone, wherever they live, have been addressed in several ways,
and I'm trying in my mind to keep them separate from the, where
do they live, which is really the title of this panel today.

And, it's at least clear to me that a big part for
persons who are infected with this virus of the way they live is
tied up with discrimination.

A couple of you have given us some estimates of how
many infected persons, or what proportion of infected persons,
end up homeless, have problems with housing, and need some form
of economic support to have a place to live, in which the
services can then be provided, the food, the nursing care and so
on.

If those numbers aren't written down in what we have, I
think we need those so we can sort of make a national estimate of
how many folks need help.

But, I'd like you to do one other thing with those
numbers, and, that is, estimate for us how much smaller that
number would be if the interest in solving discrimination were
successful. So that, no persons with HIV infection lost their

129

 

 
 

 

job before they were physically unable to do it, and no persons
with HIV infection lost their housing before they were unable to
work and pay for it that way.

If we pared it down to that core of people who became
homeless because they were too ill to find appropriate housing
and find a way to pay for it, because that seems to be the
irreducible minimum, and then we're going to have to work around
it for those that need help until we can solve the
discrimination piece.

MR. STOFFA: There's absolutely no question that a
great deal of the many problems that we see associated in terms
of food and shelter and all of that are related to
discrimination. The social stigma that we've hung around this
disease has created a new social class, people with AIDS.

MRS. GEBBIE: Yes.

MR. STOFFA: Typically then, what happens to us as
service providers is that, unless we have direct access through
hospital social workers, and that is predicated on the fact that
we only then get to be involved at the time a person's
hospitalized, typically, what we then get is the person whose car
has been repossessed, and the creditors are after them, and the
home is gone, and as service providers, legal advocates, and all
of the other avenues that we provide services in, we're patching
things up.

MRS. GEBBIE: I understand that, we've heard that, and
we're here, having heard you, to make some recommendations. I
think people who have been listening to us over the months
understand that stopping discrimination is going to be a major
issue for us.

I'm trying to sort out of that the relative impact of
discrimination on the homelessness problem, and find out if we
can stop that, what it would do to the need you have so
articulately put in front of us.

MR. STOFFA: It's a critical component.

MRS. GEBBIE: What proportion of those people you are
struggling to house, who have HIV infection, would need far less
public assistance in that housing if we stopped the
discrimination?

MR. STOFFA: All.

MRS. GEBBIE: All?

130

 
 

MR. STOFFA: Yes, I can say that. When you say -- and,
that is explaining how many would need less assistance. We
provide assistance for a great many people. There is no doubt
that all of the clients we serve would need less assistance if
there were not discrimination.

MRS. GEBBIE: I'm not sure Mr. Smith is on the same
track here.

MR. SMITH: No. I think I'll have to part company with
my brother on that one a little bit, and again, I want to get
back to one particular program, because I think it illustrates
what you are talking about more, the Rental Assistance Program.
All right.

If that, in New York City, were advertised, if you
want to call it -- or, at least the outreach mechanisms that were
generally used were used in such a way that I, Peter Smith, if I
was not involved in this effort, say I was a lawyer in a large
law firm, and all of a sudden I'm getting one of the symptoms
that an ARC person gets, but it's become extremely debilitating,
and my law firm doesn't have any internal program, as some of the
larger corporations do, thank God, for dealing with folks in that
situation. But, I saw on the subway, or I read in the
newspaper, call this number, and I called up because I was losing
my job and, therefore, couldn't pay the rent, and there was going
to be confidentiality, which the city has said there will be, and
since I haven't been fully and officially diagnosed as having
full-blown AIDS, the city would say, yes, I am eligible, and,
therefore, we will give you $300.00 a month towards your rent,
which will be enough to keep you there, plus we will link you up
with home care which will help you, somebody will come in to help
clean, to help prepare your meals and so forth.

I don't think discrimination, certainly not in all
cases, works into that. I would rather approach it the other
way, because quantifying discrimination and how it affects this
body, which we can't even -- as Doctor Walsh put it -- we can't
even identify, you know, I don't have much productive time we
should spend on that. Clearly, it's a factor, but maybe we
should spend our time on doing things that we can do, that we do
have control over, and the Rental Assistance Program, which will
prevent people before they become full-blown AIDS, and also

homeless, is something which should really be pushed.

MRS. GEBBIE: I'm not arguing that point with you at
all. I'm simply trying to separate issues and push you as far as
you can to quantify them for us, rather than -- you've given us
the --

MR. SMITH: It's beyond my capabilities.

131

 

 

 
 

PO

CHAIRMAN WATKINS: Well, wouldn't you be able to make
an estimate, Mr. Smith, Mr. Stoffa, just off the top of your
head, of what percentage of those with full-blown AIDS in your
regions or your cities are homeless? In other words, you put --
you yourself would put into the homeless category.

MR. SMITH: I think her --

CHAIRMAN WATKINS: Okay. Let me --

MR. SMITH: -- Ms. Gebbie's question was different.
CHAIRMAN WATKINS: -- build on this.
MR. SMITH: It was on how much of the homelessness
among --
chat CHAIRMAN WATKINS: I'm with you. Let me build on
at.

MR. SMITH: -- PWAs, and I assume PWARCS to be
prevented if we eliminated discrimination.

CHAIRMAN WATKINS: Yeah, I understand that. Can you
answer the question? How many persons with AIDS, full-blown
AIDS, in your cities would you estimate are homeless today, fall
into the homeless category?

MR. SMITH: With full-blown AIDS.

CHAIRMAN WATKINS: Yes.

MR. SMITH: In our city --

CHAIRMAN WATKINS: A percentage, or a number, whatever
you can give us. Is it 10 percent, 20 percent, 30 percent?

MR. SMITH: In our city, it's somewhere around 15
percent, if you want to take the actual shelter population.

CHAIRMAN WATKINS: Give me any --

MR. SMITH: You have all of the symptoms that would
permit them to be certified as having full-blown AIDS.

 

CHAIRMAN WATKINS: And, Mr. Stoffa, what number would
you come up with, percentage number?

MR. STOFFA: I think crucial in that is how you define
homeless.

CHAIRMAN WATKINS: You define it.

132

 

 
 

 

MR. STOFFA: Okay. In terms of homeless --

CHAIRMAN WATKINS: We're talking about it, you've used
the term, we can al --

MR. STOFFA: -- well, a shelter population, those who
need total care, you are probably talking, I could agree with
the 15 percent figure.

CHAIRMAN WATKINS: All right. Now, supposing you take
that population, and supposing that we recommend very strong
anti-discrimination legislation of some type that would scoop
these up, and the nation really responded to that. of those,
how many would go back into decent areas then, or, let's say the
next follow-on 15 percent population, how much would avoid
getting into the homeless situation?

You said all, Mr. Stoffa, that's why I'm saying -- I'm
trying to make the point here, is PWA homelessness inextricably
tied to discrimination? You have said -- basically, you have
said yes. Mr. Cain had a very impressive statement. It's not
unusual. We have the person with AIDS come before us, almost all
have experienced significant discriminatory practice against
them. So, I'm trying to get to the same bottom line that my
colleague is, so that we can -- we want to go in with this, we
want all the ammunition we can to point out that this
discrimination thing feeds a whole range of problems.

Homelessness may be one, and I'm trying to get enough
data to say, yes, if we would put in this effect, at least the
next generation, say, the ARCs that would go to full-blown AIDS
er the HIV asymptomatics that would go to ARC, would begin to pop
into view at a lesser rate for those that need homes, because
they have been protected in the discrimination area, and, in
fact, have been able to retain their jobs, retain their homes,
retain their insurance.

MR. CAIN: Fran, let me help you out for a second.
When you get this disease, you may go homeless, and you can
define that as either being on the street, being put out of your
apartment, or living with your family, someone taking care of
you. But, there are so many people who lose their jobs, are
discriminated against at that point, who run away and hide, and
these agencies never hear about them. They are so ashamed of
what has happened to them that they go and die on park benches or
in the home of their parents, simply because if they come forth
they feel that more is going to happen to them, and it is not
going to be of any assistance.

And, lastly, they don't know to go to these agencies.
If they did, then something might happen to help them, but you've

133

 

 
 

 

got to understand that these people who work in these agencies
only see a small portion of the people.

CHAIRMAN WATKINS: What portion do you think they see,
Mr. Cain, half, a third?

MR. CAIN: Maybe half or a third. But, I know people
who have died, and they've told everyone they've died of lung
cancer, because they were so afraid to let anyone know that they
had this disease. So, if you are going to say, would anti-
discrimination help a lot of people, yes, because in the
beginning I won't have to worry about how I'm going to take care
of myself --

CHAIRMAN WATKINS: So, you would say -~
MR. CAIN: -- over the next six months.

CHAIRMAN WATKINS: -- documented cases could be off by
a factor of two or even three.

MR. CAIN: Yes.

CHAIRMAN WATKINS: Because of this discrimination
issue. So, would you agree that PWA homelessness is tied fairly
directly with discrimination?

MR. CAIN: I think it's tied very directly with
discrimination, because for those people who are capable of
taking care of themselves, they lose their jobs, they lose their
homes, or they have to get a job that no longer supports the rent
that they have on their apartment.

CHAIRMAN WATKINS: Mr. Cain, I'm going to have to
close out, but it's shocking to me that a reputable law firm of
the type you were associated with could practice that sort of
discrimination against you. I don't understand it. It, to me,
is another indicator of how bad the situation is. The Hyatt
legal firm, from my knowledge, is a large firm with many offices.
It should be much more sophisticated than the average American
business, and I wondered if you'd sought any legal remedies from
other law firms that are as appalled as your story indicates they
should be, and what has happened?

MR. CAIN: Well, I have gone to other law firms. My
attorney, Mr. Silverberg from Philadelphia, when I needed an
attorney, I'd gone to other law firms, they refused to help me.
They refused to take the case.

CHAIRMAN WATKINS: Because it's one law firm against
another?

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MR. CAIN: They didn't say that. They thought that it
was a losing proposition, but the other thing you have to be
aware of, from this law firm doing this, of the delays that I
get. I can confidently sit here today and tell you, I'm going to
die before anything is done about the discrimination with Hyatt
Legal Services. Why? A hearing date is set, two days before the
attorney calls and says, "I can't be there." So, it's put off
for three, or four, or five more months, and nothing ever
happens.

And, I guess I'm here today, and I'm pushing for my
case, because my lawyer says I'm a person who don't keep things
to myself and don't mince my words, in hopes that a lot of other
people who are going to be diagnosed with this disease within the
next two to six months and so forth won't have to go through what
I went through, when one day I was told I am terminally ill, and
within the next 15 days, everything which I built up in my whole
entire life was taken away from me.

CHAIRMAN WATKINS: Thank you very much, Mr. Cain, and
thank you panel for coming before us. This was a very important
session that we've had here today, and one of the more difficult
issues that we're going to have to face in our report, to not
only show the linkage here, but also confine ourselves to
something that's really executable for the nation as our
responsibility around the HIV epidemic dictates, because we have
to stay fairly narrowly focused, on the other hand, the broader
ramifications fit into every other aspect of this disease that
we've touched upon. There isn't one stone unturned that we
haven't found significant flaws in the institutional process,
unable to deal with this epidemic, simply for a variety of
reasons.

And, that doesn't mean that people aren't trying to do
a job, but the old process, the slower times, just aren't
adequate anymore. We've got to move out, and we understand that,
and we'll try to make some hard-hitting recommendations, and your
testimony was very important to give us additional incentive to
do that. Thank you very much, and we'll move to the next panel.

PANEL 2: LEGAL AND SOCIETAL ASPECTS OF SEXUAL
ASSAULT AND HIV TRANSMISSION

CHAIRMAN WATKINS: This panel is a unique panel. The
witnesses will discuss the issue of HIV transmission related to
sexual assault, and is a panel prepared by Commissioner Theresa
Crenshaw.

From these witnesses, we hope to learn the extent of
this problem, to determine whether it's appropriate for this
Commission to make recommendations relative to the HIV epidemic,

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and we have a number of witnesses. Doctor Roy Hazelwood,
Supervisory Special Agent, National Center for the Analysis of
Violent Crime, FBI Academy, Doctor Ann Burgess, Psychiatric
Mental Health Nursing, University of Pennsylvania, she's a
Professor, Doctor Dorothy J. Hicks, Professor of Obstetrics and
Gynecology, University of Miami School of Medicine; Director of
Rape Treatment Center, Jackson Memorial Hospital, which we
visited not too long ago, Doctor Jane Burnley, Director, Office
for Victims of Crimes, Department of Justice, and Doctor Ira
Reiner, District Attorney, County of Los Angeles. We'll
commence then with our first witness, Doctor Roy Hazelwood.

DR. HAZELWOOD: Thank you very much, sir. I have been
an employee of the FBI for the past 16-1/2 years and have
specialized in criminal sexuality for the last 11 years. AIDS
is a growing national concern, as it affects members of our
society from every racial and socioeconomic group, as well as
individuals of different sexual persuasions.

I am particularly concerned with the potential it has
for inflicting additional mental anguish and threat to life for
the victims of sexual assault. For the purposes of my
testimony, I'll define sexual assault as those instances in which
body penetration does occur. Doctor Burgess, of course, is the
authority on victims of violent crime, and I've done extensive
research with her in serial rapists, which I'll address in just a
moment. Victims of sexual crimes experience a range of emotions
following a sexual assault. Fear is the emotion primarily
experienced. This is closely followed by anger, guilt,
humiliation and degradation. They also lose a sense of trust and
control.

One of my primary duties is the training of law
enforcement officers in the investigation of sexual crimes. One
of my most important training goals is to sensitize the
investigators as to what the victim of a sexual assault
experiences, and to teach them methods of dealing with the victim
that will help alleviate the emotional torment and assist in
restoring trust and control.

However, no amount of training is going to teach them
how to reduce the fear of being fatally infected as a result of a
sexual assault. I'm unaware of any study which reports on the
number of AIDS victim who were infected as a result of sexual
crime. It's my opinion, however, from talking to health
officials that the number of identified AIDS-infected patients is
increasing at an alarming rate, and there is reason to believe
that it's just a matter of time before our society will be
confronted with violent crime-related HIV infections.

The National Center for the Analysis of Violent Crime
deals primarily with violent serial crimes, such as homicide,

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rape, child abduction and molestation. The offenses are brought
to our attention because the criminals are committing a large
number of such crimes, and, consequently, leave behind a great
number of victims.

Doctor Burgess and myself have recently completed
research on the interview of 41 men who had raped ten or more
victims each. That research consisted of reviewing all available
documentation pertaining to the offenders and their crimes, and
face-to-face interviews conducted by myself and other FBI special
agents.

These 41 men were responsible for 837 sexual assaults,
more than 400 attempted rapes, the theft of more than $4 million
worth of property, and 200 convictions among them. The point is
that a relatively small number of offenders, the relatively small
number of rapist have the potential for inflicting a large number
of victims if they themselves are carriers.

It's a well-known fact that rapists have a high rate of
recidivism, and many of the rapists told me that they couldn't be
certain they would not rape once they were released from prison.
We did not question them about AIDS at the time, and I regret
that we did not do that.

I've just become aware of a series of rapes in which
the offender brings a hypodermic needle and syringe filled what
appears to blood, and uses it as a threat by telling the victims
that it contains infected blood.

It has been explained to me that the risk of being
infected with AIDS is greatly enhanced if the infected
individuals body fluids enter through an open wound. In the
rapist study, we examined for escalation of violence and found
that ten of the 41 men did increase in violence over the period
they were committing sexual crimes. One of the more violent
sexual offenders is the sexual sadist.

I'm currently involved in a study of sexual sadism with
Doctor Park Dietz and Janet Warren, of the University of
Virginia. We defined a sexual sadist as being an individual who
exhibits a consistent and long-term pattern of being sexually
aroused from the victim's response to the intentional infliction
of physical and/or emotional pain. Thus far, we have done an in-
depth analysis of case materials associated with 28 document
sexual sadists. The case materials include police reports,
victim statements, and materials seized from the sadists.The
seized materials include recordings of the crimes, such as
photographs, audio and video tapes, diaries, manuscripts and
other writings. We also have reading materials dealing with
sadistic activity and bondage paraphernalia that we've examined.

137

 

 
 

 

These men were responsible for 95 victims of limitless
brutality. Wound-producing acts observed in this study included
the use of sharp instruments, blunt force, needle injections, the
insertion of extremely large foreign objects into the body
cavitiesand whipping. 17 of these 28 men kept their victims in
captivity for 24 hours or longer. Their physical mistreatment of
their victims certainly raises the risk level of AIDS infection
if the sadist is a carrier.

Three other high-risk sexual assault victim groups are
the aging, the very young and homosexuals. I'm aware of
countless cases of older victims experiencing tearing wounds as a
result of vaginal or anal rape, or as a result of being struck.
As is known, the older person is much more susceptible to
wounding and physical injury than is the younger person. The
very young victim is also more likely to experience tears to the
vagina or anus due to the physically small openings to these
areas.

Homosexual crimes, which are of a sexual nature, carry
a particularly high risk of infection for two reasons. First,
there is a significantly higher number of AIDS victims in that
group, and, secondly, in such crimes there is typically a great
amount of violence because of emotional involvement.

In the very recent past, I was involved in a homicide
investigation of a man in his 30s who is an active male
prostitute, and was in the process of a gender change. He had
taken hormones to enlarge his breast, and dressed and acted as a
female. He was found strangled and beaten, and there were open
wounds on his body.

Supervisory Special Agent Kenneth B. Lanning, a friend
and colleague of mine at the National Center, has advised me that
children are particularly vulnerable to becoming infected by
child molesters who are carriers of the virus, not only from the
physical aspects mentioned earlier, but also because of repeated
sexual contact with their offender over long periods of time.

In rape, the victim is unlikely to have sexual contact
with the offender on more than one occasion, and this is not the
case with child molestation. A large number of victims
associated with the preferential child molesters are staggering.
Doctor Jean Abel, of Emory University, an internationally
recognized authority in the field, conducted a study of more than
500 such offenders, and found that the average number of victims
per offender was over 300. Hypothetically speaking, an infected
pedophile could transmit the disease to literally hundreds of
children. Thank you very much.

CHAIRMAN WATKINS: Thank you, Doctor Hazelwood. Doctor
Burgess.

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DR. BURGESS: Mr. Chairman, members of the
Presidential Commission, I have been counseling victims of sexual
assault and studying the problem of sexual violence in this
country since 1972, and I welcome this opportunity to express my
concern about HIV transmission through sexual trauma to victims,
victim populations.

My concern about this problem is from a clinical
perspective. Over four years ago, I was asked to evaluate 15
teenage boys who were all victims of a child sex ring involving
two convicted adult male perpetrators. In particular, the severe
anxiety, the depression and the suicidal behaviors that emerged
in this population specifically related to the boys' awareness
that one of the adult male perpetrators tested HIV positive after
arrest.

At that time, no one had even thought of AIDS antibody
testing, or follow-up of the boys after the criminal trial. It
was only through the exploration of their symptomatology while
they were psychiatrically hospitalized that their deep-seeded
fears about contracting AIDS was revealed.

A second case involving an adult victim, who was raped
in 1985, she was a 29-year old mother of one, who was driving out
of the work parking lot when the assailant popped up from the
back seat of her car, forced her at knife point to drive to a
secluded area.

After raping her, he had cut his finger somehow in the
commission of the assault, and he then forced her to suck his
fingers. After he was apprehended, the husband of the victim
learned from police officers that he was experiencing withdrawal
symptoms. He was tested, found to be HIV positive, and then the
added issue for this victim became very apparent. What was
impressive in listening and talking with this couple was their
statement that no one in the system was able to help them with
their concern about AIDS transmission. They were knowledgeable
in rape trauma, but they were not able to help them in any way
with this.

So, it is almost a moot point to assume that either
child, adolescent or adult victims of sexual abuse are not going
to be concerned about AIDS transmission, as well as other
sexually transmitted diseases. We have not yet established
procedures and protocols that are sensitive, protective,
therapeutic, yet, informative to victims of sexual assault. I
also am drawing from a grant that I have from the NIMH Special
Projects Section, in which we have had two meetings, in which we
have gathered together various disciplines to talk about this
problem. So, I will be adding from that meeting some of the
recommendations.

139

 

 

 
 

 

We do not know the risk level of HIV infection to
sexual assault victims. In terms of the physical trauma of
sexual assault, the sexual penetration of a body orifice, whether
that be vagina, anus or mouth, presents a threat to the integrity
of the skin and mucous membrane, and, thus, tissue damage can
result from microscopic tears not even noted on visual
examination to the obvious laceration of muscle.

In females, where there is non-estrogenated tissue,
that being the young and the elderly, there is a greater threat
to skin integrity, and any skin break will permit transfer of
body fluids, as in sexual abuse. While all rape is physically
and psychologically traumatic, the degree of force and the tissue
sensitivity must be factored in to the risk of viral
transmission. When sexual abuse is ongoing and secret, as in
incest and sex rings, there is an increased vulnerability to body
fluid transfer.

There are no published statistics on the number of
victims who are assaulted by an AIDS-infected offender, or who
convert to a seropositive status as a result of the abuse.
However, as recently as May 12, 1988, the Medical Tribune
reported on five documented cases of pre-adolescent children from
the New York area, one case of which involved incest, and where
the father abuser had died of AIDS in 1984.

The concern with the risk level for sexual assault
victims is multi-fold. First, as we have already heard from Mr.
Hazelwood, sex offenders have multiple sexual deviations and sex
practices, which place them in a high-risk carrier status. The
under-reporting of victims has handicapped us in realizing the
full extent of the rape problem. However, with the study of sex
offenders our knowledge has expanded concerning the staggering
numbers of victims they assault in their rape career.

Second, victims are aware of their risk through
infection through a sexually transmitted disease. They know AIDS
is a sexually transmitted disease, and sexually transmitted
disease prevention is part of most sexual assault protocols.
Thus, victims are beginning to ask about exposure to AIDS. We
have learned that whether or not victims are seropositive for
AIDS antibody, their anxiety over the possible exposure is
trigger enough for serious concern.

Third, the follow-up counseling of all sexual assault
victims has not been impressive. Barriers on the part of
victims include beliefs that they can recover on their own, that
time will take care of everything, that it is a sign of weakness
to be counseled. There is also the reality that counseling
resurfaces and keeps offering the trauma as a painful reminder.

Barriers on the part of mental health providers

140

 

 
 

Barriers on the part of mental health providers
include traditional methods of counseling, which require the
patient to initiate treatment.

Children often are not counseled because of parental
attitudes, rather than any resistance on the part of children.
Recommendations: I'd like to offer several recommendations to
the Commission.

First, on reporting and monitoring of cases, in order
to know the number of cases of AIDS transmission through sexual
trauma, there needs to be a similar mechanism for reporting cases
and notifying victims as exists at CDC for informing partners of
HIV-positive individuals.

We note the growing volume of rape and sexual assault
cases, and yet there is no central reporting center. It is
recommended that CDC hire one person for responsibility in the
following: monitoring the reporting of HIV cases transmitted by
sexual trauma; developing a protocol for notification of victims
of HIV-positive individuals, and training others in interviewing
HIV-positive individuals regarding their non-consenting, criminal
sexual behavior.

The HIV counseling course developed through the
training, education and consultation on the Centers for Disease
Control has an existing course on HIV serological test counseling
and partner notification techniques. This course has been
presented at 11 sites across the United States, and is an example
of a curriculum effort to educate and train health workers and
professionals in this area.

Currently, the CDC training counselors only inquire
regarding consenting sexual behavior. In order to counsel, they
need to inquire about non-consenting, and have protocols to
follow regarding notification of victims.

Second, research of risk factors for sexual assault
victims. One methodology would be a multi-site study, with sites
selected on the basis of low, moderate and high-population areas
for HIV-infected persons. Victims would be requested to
participate in the study by having the HIV antibody test at
specific intervals over time, and this testing would be included
in the routine tests for sexually transmitted diseases.

=<

Counseling guidelines for the research protocol would
ensure that the testing be both confidential and voluntary, and
the victim follow-up would be both therapeutic as well as
informative. It is recommended that additional funds be
provided to NIMH to continue their support of the prevalence and
incidence of AIDS in the sexual assault population.

141

 

 
 

Third, victims' services and follow-up. Model
programs for the follow-up care of victims who do and do not
seroconvert need funding. A longitudinal study as to the pattern
of reporting to family and friends, as well as patterns of health
response over time need to be part of the program of services. .

Nurses, as primary health care service providers, have
been at the forefront of trying to maintain the preventive
interventions, such as immunization, health check-ups, adherence
to long-term complex rehabilitation regimes. Nurses have had
success with compliance to long-term follow-up, as noted through
maintaining long-term health regimes. Therefore, they are a
logical professional group to take a leadership role in the long-
term follow-up of victims of sexual assault.

If a victim converts to seropositive status, there
needs to be counseling and health care intervention provided
throughout the various stages of the AIDS disease. It is
recommended that additional funds be provided for AIDS and
victim service demonstration projects to the NIH National Center
on Nursing Research.

Fourth, education and training programs. Because rape
and sexual assault continues to be highly unreported, health
care professionals need to be educated to detecting undisclosed
sexual trauma. For example, any child with a sexually
transmitted disease should have sexual trauma ruled out. It is
critical that curriculum content on rape and child sexual
victimization, as well as AIDS transmission, be implemented into
basic professional programs, such as nursing, medicine,
psychology, social work, education, law enforcement, et cetera.
Also, curriculum content needs to be provided through continuing
educational courses to practitioners, such as marriage, family
and sex therapists, child psychiatric nurses, psychiatric social
workers, et cetera. This content can be provided through
workshops and seminars.

It is suggested, because training for all health care
professionals generally has their own existing laws for
including this, that this be recommended that it be included.
Also, suggested that NIMH encourage proposals for new multi-
disciplinary training, as well, existing programs to provide
education and treatment for the long-term effects of sexual
trauma and AIDS-related psychiatric problems.

Fifth, on the treatment of sex offenders, there is a
current paper out that has looked at the cost benefit and,
essentially, says that it costs more to simply incarcerate sexual
offenders. It is more economical if you look at the recidivism
rate to incarcerate and treat so that it is highly recommended
for the sake of the victim, and the re-offense potential that sex
offenders2be treated.

142

 

 
 

 

I would also briefly like to recommend from the
Committee on the AIDS and Sexual Assault Group, that they
recommended that there be testing of incarcerated sex offenders
at the time of the release from prison and six months after
release.

Also, Doctor Park Dietz, a forensic psychiatric and a
researcher of violent crimes, has suggested that at arrest a
blood sample be taken and frozen. Upon indictment for the
offense, the sample should be tested for AIDS, another test
should be taken six months later.

It is also recommended that there be testing for high-
risk groups, if that sexual offender is identified as being
infected with the virus, it should be mandatory that the victim
be advised, and that mandatory notification to emergency service
personnel, if a sex offender has tested positive for the HIV
virus. These are the suggestions from the Committee, and I
offer these to you.

CHAIRMAN WATKINS: Thank you, Doctor Burgess. I think
it's appropriate for me to comment that the degree of
specificity in your recommendations, and the thoughtfulness that
you put into that is extremely useful to the Commission.

So, many times witnesses come before us that tell us
the problem but haven't really thought through to the degree you
have what would be helpful for this Presidential Commission to
make in terms of its recommendation to the President. Those are
extremely good recommendations, and they fit so many of the
statements made by other witnesses that have come before the
Commission that have touched the fringes of this issue. So, I
think you've given us not only food for thought in this one area,
but you have also, I think, given us some hints of how we might
address a range of other areas that deal with the legal aspects
that might go broader than sexual assault of young people, for
example.

CHAIRMAN WATKINS: Doctor Burnley?

DR. BURNLEY: Good morning. My name is Jane Burnley.
I'm the Director of the Office for Victims of Crime within the
Office of Justice Programs in the Department of Justice. It's an
honor for me to be here this morning before the Commission to
represent my office and to speak on behalf of innocent citizens
who have been victimized by crime, in particular sexual assault.

I'd like to commend the Commission for convening a
panel on this topic because we believe it's a topic which has not
gotten very much attention to date. While we also believe that
the findings of this Commission will help to shape very
significantly the national response to the AIDS epidemic, and

143

 

 
 

 

within that context I urge that the needs of victims of crime be
considered and given attention and support.

Due to more than a decade of grassroots efforts and
bipartisan federal leadership over the past decade, as a nation
we believe that we have begun to identify and address the needs
of victims of crime. However, the specter of AIDS and the
possibility that it was transmitted to the victim in the course
of a crime adds yet another frightening and life-threatening
dimension to the crime victim's plight.

In my testimony this morning, I'd like to discuss two
aspects of the issue of crime victims and AIDS first. There's
the possibility that the victim was exposed to HIV during the
course of a sexual assault or sexual abuse and the consequences
of that possibility. Second, the issue of an assailant's willful
exposure of a victim to AIDS and the criminal justice system
response to that behavior.

My perspective in this testimony is not that of an
attorney, even though I'm from the Department of Justice. My
background is in human development, mental health and social
services. Instead, I will present the perspective of an
administrator of federal programs designed to meet the needs of
crime victims and I will also attempt to convey the perspective
of victims and victim advocates.

Victims of sexual assault include men, women,
teenagers, young children and even infants, astonishingly today,
who suffer tremendous psychological and physical trauma that must
be addressed in order for them to recover from the trauma of
their victimization. Adult victims of rape often suffer
psychological stress that lasts for many years after the attack.
As you heard from Doctor Hazelwood, they consider the incident
life-threatening, regardless of whether or not overt force was
used, and they view themselves as powerless. They often suffer
symptoms of rape trauma syndrome, which include high levels of
fear and anxiety, shame, self-blame and anger. Research
demonstrates that they often develop post-traumatic stress
Gisorder which can plague a victim for years following the
assault, evidencing itself through depression, difficulty
concentrating, intrusive thoughts about the incident, sleep
disorders and phobias. Indeed, many victims report that this
post-traumatic stress symptoms last ten, 15 and 20 years after
the incident. Some never feel completely free of the impact of
the experience.

The physical and emotional trauma resulting from rape
is magnified many times by the fear of contracting AIDS as a
result of the attack. For several months, rape crisis centers
around the country have reported that victims often enquire about
AIDS after they have been assaulted. Counselors tell us that

144

 

 
Dn

shortly after the initial crisis of the assault has subsided,
women express their fear of contracting AIDS and seek a referral
for testing.

Unfortunately, testing is not the reassurance that we
wish it could be. Since many rapists are not caught, most
victims will have to be tested more than once over a period of
several months. But even then, if the tests are negative,
victims still worry and wonder if and when the antibodies may
show up, even years later.

We believe that when an assault victim seeks testing
for themselves, that they should not have to bear the costs of
that kind of testing. In addition, that restitution orders ought
to be considered part of the sentencing process when we have
convictions of offenders.

Even more tragic perhaps than the possibility of AIDS
for adult sexual assault victim is the possibility that child
victims of sexual abuse or sexual assault might contract AIDS as
a result of their victimization. Indeed, we know that -=- from
what we know about AIDS transmission, children may be at greater
risk.

As you know, child sexual abuse occurs in our society
at an alarming rate. It is estimated that more than 100,000
children are sexually abused each year. Most victims of child
sexual abuse are victimized by a family member or an adult who is
known to or trusted by the child. The effects of child sexual
abuse on victims vary depending upon several factors, including
the nature and the extent of the abuse, the age and
developmental level of the child and the relationship between the
child and the perpetrator and the period of time over which the
abuse took place.

Child victims suffer enormous emotional distress and
develop maladaptive behaviors in order to cope. School grades,
academic skills, social skills, all suffer. Self-esteem
plummets. The propensity for acting out behavior, substance
abuse, juvenile delinquency increase as does the likelihood that
the child will sexually abuse others. I'd like to tell you
briefly about a couple of cases that our office has been involved
in which involved the United States Attorneys Offices where there
was federal jurisdiction.

 

In one case, there were over 100 male victims in one
multiple victim child molestation case. The number of boys
represented a very significant proportion of the population in a
given community. The boys and their families, their other
teachers and the entire community of friends and neighbors were
devastated by the extend of the abuse and the length of time that
it had been going on, that is for several years. Not long after

145

 

 

 
 

 

the investigation was completed, members of the community began
asking the question, "Could this man have been an AIDS carrier?"
The prospect of an entire community being effected in this way
evoked tremendous fear and anxiety.

In this particular instance, the issue arose of
whether or not the defendant, who had been charged and was in
custody, could be tested prior to conviction, bringing up issues
of right to privacy and right against self-incrimination. In
this particular case, testing for HIV was not done until after --

fortunately, the defendant pled guilty and testing was done --
it was ordered at the time of sentencing. Thus, the community
waited several weeks to. know the results of the testing.
Fortunately for that community, the results were negative. But
that was the first test.

In another case of extensive and prolonged molestation
involving more than 150 boys, in this particular instance the
pedophile kept computerized records of the molestation of his
victims. The parents of the boys expressed concern about AIDS
very early in the criminal justice process and community outrage,
we believe, contributed to the early resolution of the testing
issue. The perpetrator agreed, prior to his conviction, to be
tested. This was shortly after his arrest. Again, the results
were negative. It helped to substantially alleviate the parental
concern and anxiety and it allowed them to focus their attention
on assisting the children to recover from their victimization.

But what if the perpetrator had refused to be tested?
What if he had not pled guilty? What if we had been involved in
a protracted trial and there had been an enormous delay before
the testing could have been done? There's another graphic
illustration that I'll share with you with regard to the effects
of molestation and the AIDS issue. In an early counseling
session, a therapists shared with us. This is therapist who has
a number of boys who were victimized by one perpetrator. Early
in the counseling session, a boy expressed his feeling that the
therapy really didn't matter anyway since all of them were going
to die of AIDS.

Another form of victimization, about which there is not
clear legal consensus at this time, is the failure to fully
disclose to a sexual partner the presence of HIV infection.
Education and counseling for some AIDS carriers does not appear
to be enough to curb their dangerous behavior. Recent experience
has demonstrated that an unknown number of AIDS carriers may be
maliciously exposing others to the virus or are clearly not
taking appropriate protective measures resulting in a new, more
deadly form of sexual abuse. For example, the United States
Army has recently prosecuted three cases of soldiers who have
tested HIV-positive, were appropriately counseled and
subsequently engaged with others in unprotected intercourse

146

 

 
 

without disclosing the fact that they were infected. In one of
these cases, a victim has tested HIV-positive. The victim will
live her life with the knowledge that someday she will probably
develop full-blown AIDS. Coping with this particularly
destructive effect of her victimization has dramatically altered
the quality of her life.

I have in my testimony some instances of state
legislation, but I see that you've already had a hearing on that.
So I'll skip over that very quickly and just sum up by saying
that the federal government has jurisdiction over some violent
crimes, including sexual assault on Indian reservations, federal
lands and military installations. The issue of AIDS in federal
victims of crime or victims of federal crimes has already
surfaced as a result of our jurisdiction. We have had to respond
to this fear with regard to some of these multiple victim cases
that I have described to you.

In addition, Assistant Attorney General Richard Abell
of the Office of Justice Programs chairs a Department of Justice
working group on AIDS and victim of crime which is considering
several aspects of the issues which I have discussed this
morning.

Our deliberations to date are as yet incomplete.
However, we have discussed many of these issues. I would like at
this time to share with you some points of what I would consider
promising consideration.

One is that the rights and needs of victims of crimes
should be considered paramount in the legal, medical and mental
health response to AIDS as it relates to sexual offenses.
Testing for HIV should be offered free of charge to all victims
of sexual assault who wish to be tested, but we do not believe
that victims should be required to be tested. Victims of sexual
abuse and sexual assault need accurate information and sensitive
counseling with regard to the AIDS threat. Therefore, victim
service providers and counselors who assist child and adult
victim of sex crimes should be knowledgeable about the most
current information on AIDS and the appropriate places for
testing and counseling.

Criminal justice personnel should be encouraged to
give sexual assault cases a high priority so that when assailants
are apprehended, victims will not have to suffer lengthy delays
before they know the results of AIDS testing. Testing for HIV-
infection should be required of all perpetrators of sexual
assault at the earliest possible juncture in the criminal justice
process and results should be shred with victims who wish to know
this information. Victim impact statements, which are read
before the court at the time of sentencing, should reflect the
additional trauma associated with the transmission of HIV.

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Restitution orders should be used whenever possible in order that
offenders be held directly accountable for some of the financial
effects of their crimes.

All convicted sexual offenders should be tested for HIV
prior to a parole hearing or release from prison. Because the
treatment of sexual offenders is often unsuccessful and
recidivism rates are high, positive test results should be
considered an important factor in considering early parole. If
parole is granted, a positive test result should effect the
amount of supervision that offender receives following release.

Federal and state law concerning sexual assault should
be reviewed to create or increase sanctions for willful exposure
of a victim to HIV. In -addition, existing criminal laws should
be reviewed with respect to their applicability to cases in which
an infected individual willfully exposes an individual to the
AIDS virus through unprotected sex with out disclosure.

In addition, data should be collected by criminal
justice system components and victim service organizations on
AIDS related victimization issues such as the frequency of sexual
assault victims requests for HIV testing and the frequency of
positive test results for both victims and perpetrators.
Unfortunately, we know very little about the extent to which this
is happening at this time. Many jurisdictions out there are
developing policies and procedures for responding to this issue.
I think we need to encourage them to gather data and document
their experience.

Lastly, public awareness through education concerning
the potential impact of AIDS on innocent victims of crime should
be increased. I thank you for providing me this opportunity to
testify before the Commission. Unfortunately, I believe it's
only a matter of time before someone dies as a result of being
sexually victimized by an HIV infected criminal. Early
consideration of victims rights in the public debate on AIDS will
benefit not only innocent victims of crime but all citizens. |

CHAIRMAN WATKINS: Thank you, Doctor Burnley.

CHAIRMAN WATKINS: Mr. Reiner? |

MR. REINER: Mr. Chairman, thank you, and members of
the President's Commission. Let me say at the outset that I
would acknowledge that law enforcement is not the major
battleground in the war against the AIDS epidemic. However,
there are shared concerns of law enforcement and public health
professionals that occasionally overlap. I'd like to make a few
observations about some of those overlapping concerns. Broad
statements are made that a lack of confidentiality is
counterproductive to public health. The argument is made that

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voluntary testing with the resultant behavior modification should
be encouraged and that a lack of confidentiality would discourage
voluntary testing and would therefore be counterproductive to
public health. Now, clearly there are circumstances where the
lack of confidentiality would deter people from voluntary ;
testing. However, just as clearly, there are circumstances where
that simply is not so.

Now first, let's be clear about what issue we're
talking about when we talk about confidentiality. There are two
interests involved here. One, a public health interest, to
encourage voluntary testing and not to drive the disease
underground. Second, there are individual interests in privacy
that is to protect the individual from unfair discrimination, an
important interest, to be sure, but very, very distinct from the
other question about public health.

So when we concern ourselves, as we must, with
confidentiality, it is not solely to be concerned about whether
we are going to be driving the disease underground. That is a
critical question. But there are other areas where we are not
addressing that problem but we're still concerned about
confidentiality for an entirely different reason. Now, these two
reasons sometimes overlap, but not necessarily.

Let me give you three examples, if I may, that involve
law enforcement where we are not dealing with a question of being
concerned about an absence of confidentiality driving the disease
underground. We're concerned only here with questions of
balancing interests. The individual personal interest for
privacy of an accused, a defendant, versus the interest of the
victim and society generally.

The first example is rape. In California, if a woman
is raped by a defendant who is HIV positive and that is known to
law enforcement, the jailers, to the prosecution, we may not
inform the victim. If we inform the victim, we ourselves have
committed a crime, a misdemeanor. So, a victim, a woman raped by
an HIV positive assailant may not be told that fact even if we
know it. That is the state of law in California today.

Now, obviously, it takes no argument at all to make the
point that to have informed the victim that her assailant was HIV
positive would in so sense drive the disease underground. It
would in no sense discourage other people from seeking voluntary
testing.

What is at stake here is simply a matter of balancing
interests, the interest of privacy on the part of the defendant
or the interest of the victim which are too obvious and have
already been enumerated.

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Now, I would suggest that the interests of the victim
here are vastly more important and should be paramount. The law .
that prohibits us from informing the victim is a bad law and
ought to be repealed and no state ought to emulate California in
passing such a law. Now, if we do not --

CHAIRMAN WATKINS: Excuse me, Mr. Reiner. Is that law
under review now, active review?

MR. REINER: No, it is not. It was recently passed,
about two years ago, pursuant to some very, very strong
lobbying. The very strict confidentiality laws in California
prohibit law enforcement or anybody else -- they prohibit without
exception revealing somebody's HIV status even under these
circumstances.

Now, taking that a step further. Where you have a
rapist, someone who has been charged with rape, and one does not
know that person's HIV status, I would suggest, and going along
with earlier suggestions, that there be a blood sample taken at
the time of the arrest. At the time charges are filed, that
tests be conducted of that blood sample and that there then be a
court hearing with a court finding good cause that there has been
an exchange of body fluids, if it involves the kind of sexual
assault where there is a showing of good cause, that there's
been an exchange of body fluids. Then the victim at that moment
should be informed if the test is positive as opposed to waiting
until some conviction which can be a very, very long time down
the road.

Further with respect to rape, in California we have
enhanced sentences by an additional allegation if somebody is
carrying a gun during the commission of a crime. You commit a
burglary, it is one sentence. You commit a burglary with a gun,
there is an enhanced sentence for the carrying of a gun during
the course of that crime. The reason is obvious. The
possibility of someone being killed is enhanced, therefore the
crime is more serious, therefore the sentence is enhanced. I
think that same assessment and that same analysis would apply to
rape. Where a rapist is HIV positive and knows it and
nonetheless commits that sexual crime, the sentence for that
crime ought to be enhanced just as surely as if that rapist had
carried a gun. In point of fact, if the rapist takes a gun along
with that crime, the sentence is enhanced because of the
possibility of killing the victim. Well, if the rapist carries
the AIDS virus with them and knows it, it ought to be enhanced as
well.

Another example here, prostitution. If a person is HIV
positive and continues to engage in prostitution, then obviously
they are a very serious threat to public health and should be
dealt with as such. Now, for reasons of public health here,

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prostitutes who continue knowing that they carry the virus,
continue to engage in prostitution, should receive, not as is
typical in California and elsewhere, misdemeanor sentences, but
prison sentences, felony sentences and lengthy ones to boot. It
is important not only as a matter in terms of punishment. It is
a far more serious crime to engage in an act of prostitution
when you know that you are HIV positive. But it is also a matter
of protecting public health to incarcerate these people for as
lengthy periods as possible.

Just as a note, as an aside here for those who would
say that anyone who was fool enough in this day and age to have
sex with a prostitute gets whatever he has coming to hin, I
might point out that that fool, if you will, that is infected is
going to carry that infection out and spread it into the
community amongst a lot of people who played no part in his
foolish decision to become involved with a prostitute.

Now, third area, very critical area, and that involves
suspected child abuse. Now, in California, as is elsewhere, a
physician treating the child who has reason to suspect that that
child has been sexually abused is required by law to report that
fact.

I'll ask you to consider this particular circumstance.
A physician is treating a child. The physician tests the child
and learns that the child is HIV positive. It is a three or four
or five year old child. The doctor is then able to negate every
non-sexual transmission. All then that is left is the
inescapable conclusion that the child became HIV positive
through sexual transmission. That child then has been sexually
abused clearly. There is clear evidence that the child has been.
Should that be reported? If there is other evidence, scarring or
any other evidence that would indicate the child has been
sexually abused, the doctor is required by law, required by law
to report it. But if the evidence is conclusive that the child
has been sexually abused, that is HIV positive and all other non-
sexual means of transmission have been negated, then what is the
doctor's responsibility?

If the doctor reports it, the doctor has committed a
crime. If the doctor does not report it, the doctor has
committed a crime. That, I would suggest, is what is known as
being on the horns of a dilemma and the law is improper there.

What we need to do is to consider the competing
interests here. We have the interests of the child. We've heard
all too often of the discrimination that children face when it is
known in a community that they have AIDS. So, there are good
reasons to maintain that confidentiality. But then there is the
child abuser, the sexual abuser, and these reports will generate
investigations by children's services agencies as well as police.

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Pe

 

The child abuser then is permitted to go without investigation as
a practical matter.

Those are important interests that need to be
balanced. It was suggested earlier by the Chairman, or it
appeared to me that the Chairman was suggesting that perhaps what
are needed are very strong anti-discrimination laws so that we do
not have to be irrational, as I believe we have been, in
applying confidentiality.

Confidentiality is critical, it is essential, but it
cannot be applied irrationally. It is presently being applied
irrationally. What is needed are strong anti-discrimination laws
so that we can rationally and sensibly apply these
confidentiality laws and not find ourselves in the situation that
we have in the few examples that I've suggested to the
Commission. Thank you very much.

CHAIRMAN WATKINS: Thank you very much, Mr. Reiner.
CHAIRMAN WATKINS: Dr. Hicks?

DR. HICKS: Mr. Chairman, members of the Commission,
thank you very much for allowing me to speak with you. The AIDS
problem in Dade County, Florida is monumental and is rapidly
becoming worse. In 1986, 462 cases of AIDS were reported to the
Dade County Department of Public Health. In 1987, 605 cases were
reported, and during the month of January through April of 1988,
292 cases were reported. This is an increase of 36 cases over
the same months of 1987.

An average of 11.5 percent of the HIV tests done are
positive. These tests are done on the general population in all
the clinics, including the high-risk group. When they were only
testing the high-risk group, the percentage of positive HIV
tests was 15 percent.

The AIDS Care Program at Jackson Memorial Hospital is
caring for 2,000 patients in its system. Their groups are
somewhat different, in that 21 percent of the patients are by
heterosexual transmission. Only 14 percent are IV drug users.
And the homosexual population in the Jackson program is lower
than average. Minorities have greater representation. Fifty
seven percent are black and include the Haitian patients. Forty
three percent are white and Hispanic. Now, this is separate from
the program at the University of Miami.

Since 1981, the pediatric clinics have identified 225
children who are HIV-infected. Ninety of the children meet the
cdc criteria for AIDS. There is an overall mortality of 45
percent. One hundred ten children have died. Ninety percent of
these are perinatal infections. Twenty five to thirty percent

152

 

 
 

 

of the mothers are IV drug users. The mothers of the others are
heterosexual and include all ethnic groups, including the Haitian
group. Ninety percent of the children are black. The general
feeling among the pediatricians is that many other children in
the community are infected, but as yet have not been diagnosed.

The Obstetrics Service at Jackson Memorial Hospital
will deliver almost 14,000 babies this year. At the present
time, five to six percent of all cored bloods, and they're
testing them routinely now, are HIV-positive. Most of these are
black Haitian patients, but other groups are represented and this
is a significant number.

In 1987, the Rape Treatment Center at Jackson Memorial
Hospital treated 1,695 victims of sexual battery. If we
continue at our present rate, we will hit 1,900 this year. We
had 178 patients in the month of March. Many of these victims
are at risk for HIV infection, but at the present time we are not
offering a test for HIV although we routinely test victims for
syphilis, gonorrhea, and chlamydia trichomatous.

Now, 56 percent of our victims last year, 56 percent of
almost 1,700 victims, were 11 years old or younger. There is so
much emotion surrounding the problem of AIDS in our area that no
one seems comfortable with the idea of routine testing for HIV
infection. However, this is a sexually transmitted disease, and
the victims of sexual assault should have this available to then.
Until the past several months few patients asked to be tested,
but this is no longer true. AIDS is so common in our area that
the victims and their significant others are very aware of the
possibility of contracting HIV infection. They are very
concerned about being tested and they would like it done.

Victims and their families are also concerned because
the offenders are not being tested for HIV, even though they may
be under arrest. Apparently, the offenders cannot be treated
because it is a violation of their civil rights. This is a
source of great concern to the victims and is causing
considerable emotional stress to both the victims and their
families. There is no safe sex when sexual assault is involved.
Victims in our community are acutely aware of the dangers and are
frightened.

At the present time, if the victims request testing
they are referred to the AIDS Project at the University of Miami
School of Medicine, the Clinic at Jackson Memorial Hospital, or
the Dade County Department of Public Health. Unfortunately, the
Rape Treatment Center never finds out what happens to these
tests. We don't even know if the patients go and get them done.
The test results are extremely confidential and we have no
knowledge of their results whatsoever. We have no knowledge if
there has been any transmission of HIV to rape patients.

153

 
 

 

 

During the past four months, we have had three victims
who are known HIV-positive. One infant, ten months of age, and
two young adult females. They were known to be HIV-positive
before they arrived at the RTC. There must be many more that we
do not know about. One of our victims, a woman 96 years of age,
was raped by an offender who is diagnosed as having AIDS. There
must be many others who've been exposed to this virus.

In our area, the cost for testing is still $35 a case.
I'm sure this cost would come down considerably if more tests
were done. This would be an expense, but it certainly seems
indicated in our situation. Victims of sexual assault should be
offered the test, and I don't think they should have to pay for
it. The offenders must be tested if the victims and their
families are to have peace of mind. Obstacles to testing are
the emotional impact of the disease and the cost involved at the
present time. The advantages: if the victims agree, this will
give them some peace of mind for the victims and their
significant others. It seems it's time to do something positive
in this area, and some difficult decisions must be made before
too much longer. Sexual assault victims also have rights. Thank
you.

CHAIRMAN WATKINS: Thank you, Dr. Hicks. I think this
is an exceptional panel, and I commend Dr. Crenshaw for
assembling this particular group. I think you've given us
tremendous food for thought this morning, and I'd like to open up
with questions to the panel from Dr. Crenshaw.

DR. CRENSHAW: Dr. Hazelwood, I know you have to catch
a plane relatively soon, so I'll direct my first question to you.
Could you comment a bit on some of the trends that you're seeing
and patterns of sexual assault as a result of AIDS? I'm thinking
of some of the comments you made to me about condom usage, about
the suspicion of children becoming more and more involved, et
cetera. And then, if you would add any recommendations you would
like to, I'd also appreciate that.

DR. HAZELWOOD: Yes. As I earlier mentioned, of
course, we have the offender who is carrying a hypodermic needle
and syringe, claiming that it contains infected blood and using
it as a threat or, in effect, as a weapon. I'm also aware of an
increase in the number of offenders wearing condoms. And also,
there's more questioning of victims now as to their sexual
activities in order for the offender himself to ascertain the
potential for the victim being an AIDS carrier herself. So, the
offender seems to be quite concerned with it. One thing that I
heard that I like very much was enhanced sentencing. What the
Commission might consider is that, as Dr. Burgess has suggested,
that the sexual offenders who have been incarcerated be tested at
the time of release. I would sustain that, basically because the

154

 
 

 

chance of him being the victim of a sexual assault during his .. -
incarceration is very high. As we have stated earlier, the
rapists are high recidivists in this crime and they're very
likely to rape again. So, I would strongly urge that.

Another thing I heard mentioned was the testing at the
time of arrest, which I support wholeheartedly. I think that
test sample should be frozen until the time of indictment and
then upon indictment they should be tested. I say that because
the offender can, in fact, become infected after his arrest, if
he's incarcerated pending bail or if he's released on a bond,
that type of thing. So, I think he needs to be tested at the
time of arrest and not later.

I might also suggest -- the enhanced sentencing, yes, I
concur with that absolutely. I think that's a very good
statement that Mr. Reiner made. I would suggest that if a person
has AIDS, as he has stated, and intentionally has raped someone,
that the sentence be enhanced by as much as 25 years. That would
be my personal recommendation.

I would also like to suggest lastly, if I may, that if
all high risk groups be tested, that if an offender, a rapist for
example or a child molester, is in one of those high risks groups
and has not submitted for voluntary testing, then I think
enhanced sentencing should be considered there also.

DR. CRENSHAW: Thank you. I'd heard some speculation
that there's concern among experts in the field that there will
be an increased shift among sex offenders to children because
they're perceived as less sexually experienced. Is that correct

DR. HAZELWOOD: Yes. Ken Lanick again, the person I
mentioned earlier, advised me of this. The offenders will become
quite concerned with being infected themselves and then will turn
and look for virgin, if you will, victims to assure that they
themselves are not -- there seems to be shift in that direction,
yes.

DR. CRENSHAW: Thank you. Dr. Hicks, you were
explaining to me some of the difficulties that you have that you
just touched on about getting test results on patients that
you're treating who are hospitalized or who are treated at local
hospitals. I'd appreciate if you'd elaborate on that a little
bit and make a suggestion of what mechanics can be put in place
for a better flow of information. Please also include those
children who are hospitalized and perhaps known to be positive
that you never hear of who might have been victims of sexual
molestation. And in particular, I wonder if the CDC reporting
might not be missing some cases and be over simplistic by just .
assuming that any child under six or seven or five is a birth
canal infection. If the perpetrator happened to be a father, the

 

155
 

 

mother might be infected and the child as well. That's a long
question, but if you could comment on a few of those aspects, it
would be helpful. /

DR. HICKS: Well, it's been a’ source of annoyance to
me and to people working with me, that we haven't been able to
get the test results back. I think things are now starting,
perhaps hopefully, to loosen up a little bit. But we still do
not get any names and so forth. I think it's essential that
although it's important that it be confidential, that we have
some idea of who these people are so we could at least give them
some idea that they may be infected. The 96-year old woman, no
one has told her that the rapists is an AIDS individual.

Our records are very confidential. We keep them
totally in the rape center itself. They do not even go into the
record room and we code them so that you could not just find them
accidentally anyway. I don't know what the answer is, but I know
we must have some kind of return on the testing that is done so
we have some idea. One of the things that bothers me in our area
is that there is so much AIDS in the area that after awhile if
you work with it long enough, it gets to be routine. We have
problems keeping the standards of infectious control higher. As
I say, you get to the point where you think everybody has it and
so what. I'm not sure how we're going to be able to do this.

One of the problems in particular is extremely secretive. I
think we can work with the health department very well. I think
we can work with the hospital very well, but I'm not sure how
well we'll be able to break the confidentiality of the research
program. But I think it's absolutely essential that we test in
our area. There is just so much sexually transmitted disease in
general down there that we are just seeing the tip of the
iceberg.

MS. GEBBIE: Could I ask a clarification -- I got lost,
I think -- whether you are talking about difficulty getting
access to records for patients who are not known to your center
but you think they ought to be referred there, or a patient whose
already known to your program that you've referred elsewhere for
testing?

DR. HICKS: The patient who is known to our program
and we have referred elsewhere, we don't get any feedback on.

MS. GEBBIE: Do you ask that patient to send the
results back or have a consent from the patient and you still
don't get it?

DR. HICKS: We're not always sure that they even go,
because at the present moment we have no capability of testing
them ourselves. So we have to send them someone and we don't
always know whether they even get there.

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- MS. GEBBIE: Okay. Thank you. I'm sorry to interrupt

you.

DR. CRENSHAW: That's all right. Thank you very much.
I appreciate those comments.

MS. GEBBIE: Cory?

DR. SerVAAS: My first question is to Dr. Hicks.
Following up on Kristine Gebbie's comment about the testing, you
said you have no way to test the patients in your facility?

DR. HICKS: No, we do not test directly ourselves.

DR. SerVAAS: Why is that? Would it not be more
practical for you just to do the tests and send them off to the
lab where they can be done properly and get the results since you
are a physician?

DR. HICKS: I don't have an answer to that really
except that I'm not sure that the hospital laboratory is doing it
as such. As I understand, the tests are being done in a project
within the group and it goes in through that project. We have
not argued too much until recently about it because I feel that
there must be counseling available for patients who are going to
be tested. I think that's a very important part of it.

DR. SerVAAS: And you don't have counseling?

DR. HICKS: Yes, we have rape crisis counseling, but
I'm talking about -- the rape treatment center is basically a
crisis situation. I get a little bit nervous, not nervous but
apprehensive, if there is not a long-term follow-up on these kind
of people. So I would much rather have them in a program, and we
have two programs in the area. I'd much rather have them in a
program where there is an appropriate long-term follow-up because
in my experience rape victims are extremely difficult to follow
over a long period of time, most of then.

DR. SerVAAS: My other question is to anyone on the
panel. This information came to me by word of mouth and it may
not be accurate at all. But maybe some of you know about it or
other cases where the HIV virus has been spread through the oral
route. This story that I'm asking you to see if any of you've
heard of it allegedly took place in a Scandinavian country where
a spouse did in his or her spouse by pouring blood in the tomato
juice and the spouse got AIDS and died. This may be fiction, but
I was told this by some person who had been studying AIDS in
Europe.

157

 
 

 

Have any of you heard of any route where through the
gastrointestinal tract AIDS has been -- I mean that kind of sex
abuse could be probably putting sperm and semen there into the
mouth, but where it was done through food or beverage? The
episode is not one you've heard about?

DR. HICKS: No.
DR. SerVAAS: Thank you.
MS. GEBBIE: Mr. DeVos?

MR. DeVOS: Mr. Reiner, you obviously are an expert in
the law in all these areas. Could you.draft for us a sample
piece of legislation that would take care of the exceptions? You
know, everybody here agrees you've got to have confidentiality
and yet everybody's saying there are certain things where you
shouldn't have to have the right. But, there are two people who
have rights, you know. And the moment that line is crossed --
now, can you help us draft a piece of legislation that will show
us when to make those exceptions and what to recommend?

MR. REINER: I would be delighted to do that,
absolutely. Our office presently has in draft form legislation
to be submitted in California to address all those. I'd very
much like to share that with the President's Commission.

MR. DevOS: That gets down to it. You know, everybody
talked confidentiality, and everybody agrees and says, "Amen,
brother." But, there are things and there are times, and those
exceptions should be noted. Whatever you can share with us we'd
appreciate.

MR. REINER: I would agree. If I might take just a
few seconds here, not to belabor the point, but to demonstrate
again just how irrational the application of confidentiality laws
can be, we have concluded an investigation unsuccessfully because
the investigation has to be closed, and I think you would all
agree that investigation should not be closed. But, it must be,
because of California's confidentiality laws.

A police officer on routine patrol observed in a trash
bin a number of syringes with blood in them, a whole package of
them, that were left unprotected, just strewn about in a trash
bin. He brought them in. They were examined, and they had the
labels from -- and they were outside a laboratory that does blood
work. They had labels on them from a particular doctor.

The police went to see that doctor and the doctor
said, yes, he had sent those blood samples to that particular
laboratory. That doctor's specialty is to treat AIDS patients.
Clearly, these samples were infected, many of them were infected.

158

 
 

 

Indeed, the doctor advised the police officers to treat them as
infected with AIDS. Yet, we cannot continue with this
investigation, because it would be illegal to test those blood
samples to determine whether they are HIV-positive when clearly
they must be.

So, here we have a laboratory throwing out its blood,
these infected needles with blood, just almost as casually as
they throw out their sandwiches, and in the same package, not
taking any precautions. Yet, they are, for all practical
purposes, immune from investigation, immune from prosecution,
because, even though we know perfectly well those samples are
infected we cannot test them. To actually test them is itself a
crime in California.

Yet another example of how irrational it can be. A
doctor treating a patient with AIDS in a hospital can't tell the
nurse that that patient has AIDS, can't tell another doctor that
may be involved in the treatment there that the patient has
AIDS, yet another example of how irrational it can be.

DR. PRIMM: I just spoke to the California legislature
about a month ago. The Chairman, Willie Brown, was very intent
on getting .legislation passed to repeal the very law that you are
talking about that was introduced into legislation by the mayor
now of San Francisco.

At the present moment, I think that law has been
repealed. Major Agnos, when he was an assembly person or in the
legislature, introduced that law and got it passed. Now, it's
been repealed so that doctors can talk to other health
professionals about the HIV status. I don't want to tell you
about the laws in California, the District Attorney of L.A. I
mean, it's ridiculous for me to, but that's exactly one of the
pieces of legislation that was passed to repeal the law that
you're talking about.

MR. REINER: Dr. Primm, that is pending legislation,
and it addresses itself to only one area, and that is informing
another doctor or another nurse who is treating. The rest of the
examples given would be left untouched.

DR. PRIMM: I'd like to say one other thing. The other
thing is, in discarding of material, that is infected material
from hospitals, from laboratories, from doctors offices, I'm from
New York state, and in New York State there are laws governing
how you discard that kind of material. It must be bagged a
certain way. Needles and syringes must be incorporated ina
certain way. That's not the law in California?

MR. REINER: Oh, indeed it is. You cannot discard
infectious materials except under very stringent guidelines,

159

 

 
 

 

except that you must show that it's infectious. Well, of course
it's infectious. It's infected with the AIDS virus. However, we
can't test the blood to establish what we know perfectly well is
the case, because -- this is not true with any other infection,
but with AIDS we cannot test for AIDS because that's a crime.

DR. PRIMM: I'm going to ask you another question, Mr.
District Attorney. The blood in the test tubes that was drawn
up, was it labeled with the person's name on the blood?

MR. REINER: Yes, it was.

DR. PRIMM: Had it not had the name on it, you could
have tested it, I would imagine?

MR. REINER: No. No, you cannot. There are no
exceptions in California.

DR. PRIMM: Then, how would you -- what
confidentiality would there be? This is discarded blood samples
or whatever, with no name, no identification, and you can't test
it?

MR. REINER: That's right.

DR. PRIMM: I think that's kind of letter of the law a
little too far, don't you?

MR. REINER: Precisely my point. I'm not here to
defend that law, I'm here to bury it.

MS. GEBBIE: Rich, did you get done with your
questions?

MR. DevOS: My point is a very simple one, you know.
That is, I think generally people would agree there are
exceptions to the law, but they've got to be spelled out
carefully.

MR. REINER: Yes, indeed.

MR. DevOS: Any help you can give it, we would
appreciate seeing that and then we can look at that.

MR. REINER: Thank you.

MR. DevOS: Thank you.

DR. PRIMM: I had another --

MS. GEBBIE: Is this your real turn now, Dr. Primm?

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DR. PRIMM: I had a question. In one of -- I think it
was either Dr. Burgess' written testimony or Dr. Burnley's, where
you talked about the male. You used the pronoun "he," rather
than "he or she," in terms of being able to transmit this virus
in sort of sexual assaults. We also have female sexual
assaults. They are rarer than, of course, male sexual assaults,
and we don't necessarily have to have penetration to transmit
this virus from one person to another. That's probably the most
effective way of transmission, but there are other ways that have
been reported. So, in your written testimony somehow I'd like to
see you treat the fairer sex as equally as you have treated the
male sex.

DR. BURNLEY: It may have been my testimony. I know --
and in fact we discussed that in my office yesterday. Often, in
sexual assault and sexual abuse literature the male pronoun is
used because the vast majority of perpetrators are male. It is,
in fact, true that we are learning increasingly about female
perpetrators, and I appreciate that observation of that, your
comment.

DR. PRIMM: With sexually transmitted diseases being in
some states reportable to the state health department, why isn't
it possible to, since the disease of HIV-infection is sexually
transmitted and has been deemed so in certain states, and I don't
know -~ Dr. Hicks is not here and this was a question really for
Dr. Hicks, or you, Dr. Burnley, or you, Dr. Burgess -- in certain
states where it is deemed a sexually transmitted disease, why
can't you do contact tracing as you do contact tracing with
chlamydia, gonorrhea, syphilis, et cetera?

DR. BURGESS: This is precisely what we all are
strongly advocating. It should be treated as a sexually
transmitted disease, and go into the full panel of testing. This
is what, I think, many medical and nursing professionals would
request. .

DR. PRIMM: I think that onus certainly should be on
this Commission, no question about it, to make certain
recommendations. But, that onus is also on you as experts within
your particular states from which you come, to recommend to the
state legislature or to the governor of that state or to
whomever, that indeed this should be classified as a sexually
transmitted disease just for the purposes that you've pointed out
here today. And possibly, there should be contact tracing in
those particulary cases. I think, though this Commission can do
certain things, we can't be everything to everybody. I think
some of these things have to be done by the state and some
initiative has to be taken by the experts within those
jurisdictions who have the wherewithal to make those
recommendations. Thank you very much.

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CHAIRMAN WATKINS: Moving down to the next side of the
table here, Ms. Gebbie?

MS. GEBBIE: My question is going to be to ask for
elaboration on a point, because I think it's important to have
that elaboration on the record. Some persons who are extremely
concerned about the confidentiality of HIV test results and about
sharing those results with people would say, in the case of
informing the victim, that it doesn't make a difference how you
treat them. That is, they're still going to have a sequence of
tests over a period of many months to ascertain whether or not
they sero-converted. They're still going to have to be counseled
about their own potential for transmitting to others, because you
aren't going to know whether or not they were infected. They may
or may not get relief knowing that the person who raped them was
negative, because that person may not have sero-converted yet, so
they're going to have to be serially tested over time.

Yet, I think all of you said that victim needs to be
informed, it's very important for their treatment. Would you
elaborate on your rational for making that recommendation?

DR. BURGESS: Yes, I'd be happy to. I'd like to cite
from Dr. Howard Levy, who was unable to be here today but did
prepare a testimony. I will be submitting this. Dr. Levy is the
Chair of the Department of Pediatrics at Mount Sinai Hospital in
Chicago, Illinois. Since 1985, he's seen 3,000 children coming
into his unit, of which 61 percent have been sexually abused.

His argument, which I think is -- to answer your
question -- is that having this identified would help in the
treatment of the infections that are part and parcel, if you
will, of the HIV-infected process, and especially in children
where it hasn't been well studied, to know whether this is an
accelerated aspect because of the growth and development of the
child. He feels that, and I would support that, that not only
knowing about the virus, needing support to give to the child and
to the family, but that there can be aggressive treatment of
these opportunistic infections. So, I think that that's at
least one strong argument for having the knowledge that currently
is not available to the health team.

DR. BURNLEY: I'd like to add to that that our primary
concern has been identifying and being responsive to needs of
victims. There are, in fact, some -- let's speak of adult
victims -- there are, in fact, some adult victims who do not wish
to know. This becomes more complicated, because, as Dr. Primm
was suggesting, adult victims may be sexually active and may
eventually expose others if they do not know and then they change
their behavior accordingly.

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I don't consider this to be a simple area at all. I'm
not sure that I have a strong opinion about forcing this
information on people who have already been victimized. I think
that consideration, again, with regard to adult victims,
consideration really has to be given to their wishes. I think it
may be possible to inform them that that is a possibility,
instead of telling them yes or no, if they don't want to know,
and therefore their behavior should, in fact, reflect that
possibility. I think this is a rather difficult area when we're
talking about people who've already been victimized once.

MR. REINER: If I may respond to your question
directly, it is one that I've heard raised so many times by
people who I suggest go over the deep end on the question of
confidentiality. They say, "Well, all right, if you test the
rapist you have violated that person's sense of privacy and all
that may go with it, if it turns out that he is positive. You're
not doing any good for the victim. After all, the victim either
has AIDS or doesn't and is going to have to be tested or dealt
with one way or the other, whether the test is positive or not."

That simply isn't so. If -- and these numbers come
from the Journal of the American Medical Association -- if
somebody is tested negative, the possibility that that person has
transmitted the AIDS virus is only one in 500 million. On the
other hand, if that person has tested positive, it is one in 500.

Now, consider the plight of the victim. The victim who
has been raped can be told that she has one in 500 million
chances of having acquired AIDS, or one in 500. What that does
to that person's life for maybe a year while they must go through
that, balance that against the sensibilities of the rapist, an
easy choice.

MS. GEBBIE: My other area of question is -- I'd like
some comment from Dr. Burgess and Dr. Burnley on a point that you
raised in your list of recommended areas where an additional
sentence ought to be imposed because of HIV-positivity.

You included one that I'm not sure everyone would
include, and that's prostitution. At least, as I've heard it
discussed, a good number of people would differentiate that
because there is no compulsion on the part of the customer to
purchase sex from the prostitute. So, to include it in a list
that deals with assaulters who may or may not be HIV-infected, I
think would seem odd to some people. I would appreciate some
comments on that area.

DR. BURNLEY: I think the behavior of prostitutes
falls into the same category of some of the cases that the Army's
been prosecuting, in which you have someone who knows that
they're HIV-positive and who then willfully exposes another

163

 
 

 

individual to that infection without disclosure through
unprotected sex. I think that there ought to be criminal
sanctions for that kind of behavior.

I simply don't believe that people who engage in
unprotected sex or whatever with prostitutes ought to suffer
without any criminal response a life-threatening illness,
exposure to a life-threatening illness as a result of that.
There ought to be criminal sanctions for anyone who willfully
exposes someone to the disease.

DR. BURGESS: I would just like to add, I see you have
a panel on AIDS and the adolescent this afternoon, the issue of
the child or the teenage prostitute is going to be enormous in
terms of their capacity to spread if they are infected. That is
a very worrisome problem.

How to address it, I really don't have, off the top of
my head, any ideas on it. But, I think it needs to be looked at
since many of these are victims who have gone from victim to
victimizer status. They have no concept of time. Tomorrow may
never come. It's very hard to educate them or to help them with
any kind of preventive kind of behavior. It's just an enormous
issue.

MS. GEBBIE: Having heard it said that way, I guess
that leaves the question mark even bigger in my mind whether
you're doing much for them by adding an extra burden to a
punitive program, or whether we ought to invent some whole other
way of approaching them. Which way, I have no clear idea at
this point, but --

DR. BURGESS: Well, I think there need to be services
for child and adolescent victims all along the line. Since we
know this, I would opt for that suggestion of some type of
program to begin to at least explore what are the possibilities.

MR. REINER: If I might also respond to the question
that you raise, you make the point that there perhaps should not
be an enhancement of the sentence of a prostitute who knows --
and that's critical here -- that he or she has AIDS, and
nonetheless continues in that behavior, engaging in
prostitution, the point being that the customer is under no
compulsion to deal with that particular prostitute.

Well, that is the case, but we're not dealing here
only with the interests of that particular customer. We're
dealing here with the public's interest, the public's interest in
public health. When that customer, under no compulsion to have
sex with a prostitute, does so nonetheless and becomes infected,
that customer goes out and is potentially infecting the rest of
the community. The public at large has a vital interest in that

164

 

 
 

prostitute's behavior over an above the interest in whatever
happens to that particular customer.

MS. GEBBIE: Thank you for that clarification of your
point.

CHAIRMAN WATKINS: Dr. Walsh?

DR. WALSH: I'm one who happens to believe that this
confidentiality kick has gone much too far. There are
obligations in all of society on both sides. I'm pleased, or
was pleased again, that recently maybe the pendulum is turning.
As I said earlier in these hearings in the last two days, the
World Health Organization recently passed a resolution on AIDS
just last week, in which they said that the healthy have the
right to be protected. This is the first time that that's ever
been done at that organization, and it had 67 co-sponsors of that
resolution. So, maybe we're starting in a different direction.

I'm happy that I don't live in California, with all due
respect, Mr. Reiner. But, my concern also is whether -- as we
heard yesterday, several states now are taking certain actions in
which willful passage of the AIDS virus with knowledge is being
classified as either a class A or class B felony in several
states. But, then when you think -- like in New York where on
the blind study at Riker's Island where 46 percent of 50
prisoners that were tested blindly were positive and they stayed
in jail an average of 47 days and then went out with no
restriction. You have to wonder what the responsibility is to
the public health.

Now, should this Commission be considering a
redefinition of the term "confidentiality," or the extent of
confidentiality for recommendation? Should this Commission, as I
think basically we have a tendency to let the states show the
way, are you looking for recommending some type of federal
statute which would supercede state statutes on willful
transmission or knowledgeable transmission, whether it be in sex
offenders or not sex offenders? It's much broader than sex
offenders, because -- or rapists and those kinds of things. What
is it that you are seeking?

MR. REINER: Dr. Walsh, I'm not certain at this
point that I can present before you a definitive program of what
should be legislated federally, what should be legislated
locally. Primarily, I wanted to raise these questions as to
confidentiality. Pretty much, public health questions are
handled on the local level, but obviously there is a major
presence by the federal government. And that's going to find
it's way interwoven in how we deal with AIDS.

165

 

 
 

As a general proposition, subject to some exceptions of
course, AIDS ought to be treated as a sexually transmitted
disease. That is treated at the local level, but there is
federal involvement as well.

DR. BURNLEY: I think you will see in my testimony
that I believe that there is significant review of state and
federal legislation with regard to criminality of willful
exposure, with regard to the added sanctions that should be
invoked in sex crimes in which a person additionally not only
assaults but exposes a person to HIV.

In addition, I think the issue with regard to testing
prior to parole of sex offenders is an area that I think is
something that really néeds careful consideration. There is
legislation, federal legislation, which I believe has been passed
by the Senate or has been considered by the Senate that includes
a requirement of testing of all sex offenders, persons convicted
of sex offenses, and persons convicted of intravenous drug use
offenses, testing them at the time of conviction or at the time
of release. And also, I believe that legislation calls also for
such testing, not just where there's federal jurisdiction, but
also where there is state jurisdiction. I think that represents
some promise. That law does, in fact -- or that bill -- does
include provisions related to confidentiality.

I'm not so sure that we are at a point where we need to
redefine confidentiality, but I think certainly with regard to
AIDS there are factors related to confidentiality which typically
are not considered and have not adequately represented the
public's interest. I think that in some elaboration on the part
of this Committee with regard to what some of those factors are,
that will lay out for states that are developing legislation
some guidelines for how to approach this. I think that would be
very useful.

DR. BURGESS: I would just like to briefly say I would
like to see the Commission take this on as a recommendation. I
would like them to see, rather than just the legal part which I
think everybody has talked about, there is the ethical component.
And this has to do with the responsibilities that with rights one
has responsibilities. Certainly, from the victim's standpoint,
we don't see that being addressed when you have the restrictions
you have on confidentiality.

DR. WALSH: Well, that's what I'm getting at. I think
that those who are offended in the cases you all described, to my
mind have the right to know. I cannot see confidentiality
abridging that right. It's a conflict between two rights, and
that's what I meant by do we need a redefinition of
confidentiality.

166

 
 

 

I don't mean confidentiality as such, but what are the
limitations of confidentiality that we should consider without
disturbing the right of the HIV-positive patient to maintain the
confidentiality to avoid discrimination in job, housing, et
cetera. But, there is a point when he sacrifices, he or she
sacrifices that confidentiality and threatens the public health,
as Mr. Reiner has said. I think this is something that we must
face and must do. I just hope we can find the best way to do it.

MR. REINER: Dr. Walsh, I'm not sure that I answered
your question earlier as fully as, perhaps, I should have. Maybe
I can just take a moment here to elaborate on it.

Your question to me, as I understood it, was should
there be federal legislation in this area as opposed to local.
The answer is, perhaps yes, perhaps no in some areas. But,
there is another point here that I think is equally important and
maybe in some respects even more important, and that is the
persuasive impact that this Commission can have on the thought
processes of legislatures throughout this country, local and
state, so that rational laws can be drafted.

In California, a simple law, very simple law, that
would make it a crime to knowingly sell AIDS-contaminated blood
has been bottled up. Today, as we speak, it is not a crime, not
even a misdemeanor, in the State of California to take AIDS-
contaminated blood, knowing that it's contaminated with AIDS, and
then sell it to a blood bank. That's not a crime in California.
You can admit it. It's not a crime.

A bill that would simply make that a crime has been
bottled up because of this inordinate excessive, indeed
irrational concern with confidentiality and how somehow, ill-
defined as it may be, somehow this may breech confidentiality.
Therefore, such a law is going nowhere in the state legislature
in California today.

DR. WALSH: Maybe we just need to define exceptions to,
under certain conditions, or something of this type. Okay,
thank you.

CHAIRMAN WATKINS: Dr. Lilly?

DR. LILLY: I'd just like to get a little
Clarification on one point. Since not everybody who is charged
with a crime is, in fact, convicted of that crime, some people
are found innocent, at what point would you recommend that people
charged with a sexual crime or one of the other types of things
that you've discussed be tested?

MR. REINER: As was suggested earlier, if the
question I suspect was probably directed toward me, the

167

 

 
 

 

suggestion was made earlier by other members of the panel that
the blood sample be taken at the time of arrest and frozen,
because it's critical that that be preserved. Then, it ought to
be tested at the time charges are filed.

Now, charges being filed goes far beyond just somebody
making an accusation. That means that the public prosecutor, the
district attorney, whoever that may be, has made a formal finding
that this person has committed a crime. They are fully
satisfied. That doesn't amount to a conviction obviously. That
is done by the trier of fact. But we've gone well beyond
somebody simply making an allegation. At that point, charges are
filed and indictment is returned. That is when the test should
be conducted.

Now, if we're talking here about informing a victim, if
there has been a finding by a judge after a hearing that there is
good cause to believe that there has been an exchange of body
fluids, that is time enough then to inform the victim. Again,
we're here just balancing interests. It's not absolute one way
or the other. You have somebody who's been accused of rape.
There has been penetration. There has been a finding, a judicial
finding of an exchange of fluids. And now you have a victim who
has either one in 500 million chances of being infected or one in
500.

DR. LILLY: No, I know your statistics. I'm still not
clear at what point this information is passed on to the victim.

MR. REINER: Passed on to the victim at the time the
testing at the time charges are filed.

DR. LILLY: Okay. I'm just interested in what
percentage of cases that have gone that far are likely to fail in
achieving a verdict of guilty.

MR. REINER: Well, in our office, well in excess of
90 percent conviction.

DR. LILLY: So, ten percent of people --

MR. REINER: Well, actually it's seven percent, and
one ought not to assume that if there is seven percent
acquittals that defines seven percent innocent. Ninety three
percent are convicted. Seven percent, for whatever reason,
including obviously, in the rarest of cases, somebody who is
innocent is acquitted. But, balance that against, in terms of
the question of the sensibilities of the accused defendant versus
the victim who has been raped. All that we are talking about
here is a question of confidentiality. We're not talking here
about questions of incarceration of innocent people.

168

 

 

 
 

 

DR. LILLY: One other question that occurs at this
point is that you've talked about sexual crimes. In some
states, that includes consensual sodomy. It seems to me that
you're opening the possibility that these people can be forcibly
tested.

MR. REINER: Well, that is not a crime in the State
of California. It's not at all what we're discussing.

DR. LILLY: No, but it is in approximately half of our
states.

MR. REINER: But, again, it's not at all what we're
discussing here, so it really wouldn't be an issue, would it?

DR. LILLY: It's not what we've been discussing
directly. I just throw it out as something that you might want
to think about in achieving a recommendation on that subject.

I think I'll pass at this point.

CHAIRMAN WATKINS: Dr. Conway-Welch?

DR. CONWAY-WELCH: In this troublesome issue of
confidentiality, I thought Dr. Burgess' comment about the
ethical substrata of confidentiality is an interesting point to
pursue. I wondered, Mr. Reiner, you mentioned several times
going off the deep end of confidentiality. Do you have, or could
you share with us, not necessarily now, some examples of that or
some recommendations regarding areas that you see as "the deep
end of confidentiality"?

MR. REINER: Yes.

DR. CONWAY-WELCH: That may or ‘nay not present ethical
conflicts from the point of view that Dr. Burgess was --

CHAIRMAN WATKINS: Dr. Conway-Welch, he gave us a
whole series of very specific cases. Maybe you weren't here.

DR. CONWAY-WELCH: Oh, I'm sorry. I was --

CHAIRMAN WATKINS: Yes, very specific cases that were
very useful for putting this in the context that I think will be
useful to the Commission.

DR. CONWAY-WELCH: I have one last question. I thought
I saw in Dr. Burgess' testimony -- and when I went through it I
couldn't find it -- there are X number of men who admit to sexual
preference of homosexuality. There are Y number of men who do
not admit to that sexual preference, but when questioned will
admit to same sex sexual experiences at certain points in time.

y 169
f

’

/

 

 
 

 

That number, the "bisexual experiences," there seems to be a
great deal of question about that percentage in the literature.

Did any of you have any discussion in your testimony
over the estimated bisexual experience in our culture, or did I
simply misread that? Do you have any -- from your backgrounds,
do you have any ideas? Thank you.

CHAIRMAN WATKINS: Dr. Burnley, you have this ongoing
study that you mentioned earlier. Do the kinds of witnesses such
as Dr. Burgess and Mr. Reiner, are they a player in that at this
point at all? Are you bringing in various people in the field
that have these kinds of points of view? Because, there was a
convergence of thinking here that was very close and it seems to
me that it could be very helpful to the Commission.

By the way, I applaud what you're doing. I'd say
you're one of the more lucid members that we've had before the
Commission from the Department of Justice. I'm delighted that
you gave us something that we can put in our mill and grind a
bit. So, it seems to me that we're on the verge of perhaps
making some recommendations here that could have some national
import. On the line of what Mr. Reiner talked about, and Dr.
Burgess, it just seems to me that they're homing right in on your
area and I'm wondering what degree of collaboration you've had
with the entities such as the ones they represent?

DR. BURNLEY: Well, it's -- I think it's been rather
significant. Our office does participate in the working group
that Dr. Burgess referred to, which is a working group that's
funded through NIMH. That group has had a number of discussions
which are now in a draft report. As I said, staff from my office
has participated actively in that working group since its
inception.

The working group at the Department is an internal
working group which represents -- part of it includes
representation from the Criminal Division, Civil Division, and
other offices, Juvenile Justice, and others which have an
interest, however peripheral that might be, in the issue of AIDS.

We have convened several working group meetings and
have hashed about a number of these issues such as exactly when
in the criminal justice system a perpetrator or alleged
perpetrator should be tested. Some of those issues there is not
a clear consensus on. We are in the process, though, of working
through a report and hopefully we'll be able to generate
consensus within the Department on those kinds of issues, and
we'd be glad to share that with the Commission. A number of the
areas that I describe as areas for promising consideration as
opposed to specific recommendations -- since as I said we haven't

170

 
 

 

reached a conclusion -~ do reflect, though, the nature and tone
of the discussions that we've had.

CHAIRMAN WATKINS: Do you have a summary of those now,
even if they haven't been definitized in terms of specific
recommendations, that we could get from you in the very near
future?

DR. BURNLEY: Well, by and large, they are reflected in
the 11 points that I make at the end of the testimony.

CHAIRMAN WATKINS: So, we have them all, then, in your
statement?

DR. BURNLEY: I will review the testimony along with a
working paper that we have. I'm not sure how soon we'll be able
to have that working paper available, but I'll certainly review
to see if there are other points that would be of interest to
you.

CHAIRMAN WATKINS: Mr. Reiner, in California now for a
convicted sex offender, is there an attempt to rehabilitate
those along the lines recommended by Dr. Burgess, just
independent now of the HIV infection? Do you try to do anything
with the convicted sex offender that you're going to put back
into society because perhaps they're not in for a long period of
time? What do you try to do with that individual?

MR. REINER: No. They're simply incarcerated.

CHAIRMAN WATKINS: Nothing else?

MR. REINER: That's correct.

CHAIRMAN WATKINS: Now, the repeated sex offender that
comes is in, would it be a violation of state law in the
penitentiary, for that individual in the prison, to conduct an
HIV test on that individual?

MR. REINER: Presently, yes.

CHAIRMAN WATKINS: It's against the law?

MR. REINER: Yes.

CHAIRMAN WATKINS: How, then, if you don't change that
law, can you possibly lay a marker down with confidentiality to

the convicted felon, we'll say, for the next event?

MR. REINER: You can't.

171

 

 
 

 

CHAIRMAN WATKINS: If you believe you're going to
escalate the value of HIV-infected people who are perhaps going
to spread that, and they're knowingly spreading it, maybe even
consensually, but they're knowingly spreading this --
consensually from the sexual standpoint, not from an AIDS
standpoint. I can't believe people consent to getting AIDS.
Perhaps they do, but I think that would be kind of the unusual
case. But, they may consent to the sexual relationship. It
seems to me that, again, is someone who knowingly is HIV-positive
that is in violation of good public health practices.

Okay. Now, how do you get to the point where you make
the marker in the official criminal record that permits you,
then, in the next case to escalate the degree to which the person
has -- I mean, the punishment to which the person is allowed?

MR. REINER: For example, someone is convicted of a
sexual offense. It's rape, prostitution. Upon conviction, they
are tested. They are informed of the results. No one else is
informed. It is confidential at that point. Well, in the case
of a victim, the victim would be informed.

Let's reduce the example to prostitution. The
prostitute is informed. If that prostitute is arrested once
again, then it is examined. If it is positive, there is an
enhanced sentence.

CHAIRMAN WATKINS: There's a what?

MR. REINER: There would be an enhanced sentence.
This is a proposed law. This is not the state of the law, that
in order to enhance the sentence for a person who commits a
sexual offense because they committed the offense knowing that
they had AIDS, you have to be able to establish that they had
AIDS. That means breaching the confidentiality by requiring the
test.

CHAIRMAN WATKINS: But, you're recommending a change
that would allow the process along the lines I discussed to be
able to take place?

MR. REINER: That's correct. Yes.

CHAIRMAN WATKINS: Routinely for this particular kind
of offense?

MR. REINER: Yes.

CHAIRMAN WATKINS: Is this something, Dr. Burnley,
that you're sympathetic with in your group that's studying this?

172

 
 

 

DR. BURNLEY: Yes. We do think that, for example, the
federal statutes which cover sexual assaults on Indian
reservations should be reviewed for the purpose of, one, looking
at adding additional sanctions when there has been exposure of
the victim to AIDS, and in addition, that states should do the
same thing. We think that states should be encouraged to review
their statutes with that in mind.

CHAIRMAN WATKINS: You used the term that the
determination on an accused for one of these kinds of offenses
would be tested at the earliest -- I think you used "at the
earliest juncture in the legal process."

DR. BURNLEY: Yes.

CHAIRMAN WATKINS: And we heard Mr. Reiner get very
specific about that. Is the thrust of your thinking, at this
point, along Mr. Reiner's lines? "At the earliest point," you
obviously were shy of conviction at that point.

DR. BURNLEY: The Department at this time certainly
has not endorsed the concept of drawing a blood sample at the
time of arrest. That is something which we have discussed and we
will continue to discuss at the Department. But, I cannot say
that at this time we endorse that notion. I definitely think
it's something that is worthy of further exploration.

The question is, what is the earliest point of taking
that sample. And in the two cases that I mentioned, in one
instance an alleged perpetrator prior to his pleading even,
while he was in custody, voluntarily agreed to be tested so that
the issues of his right against self-incrimination were not a
factor. He voluntarily agreed to it, even with counsel.

In another case, though, there was a good deal of
concern that a delicate guilty plea that had been obtained from
one multiple victim perpetrator, that he might back out of that
if he were forced to be tested because of his psychological state
just prior to his pleading and sentencing. And at that time, the
testing was done after the sentencing. It was ordered at the
time of sentencing.

CHAIRMAN WATKINS: But, in your case, Mr. Reiner, the
voluntary -- the willingness of the accused to be tested still
puts you in a bind, does it not, on breech of confidentiality?

MR. REINER: Oh, this doesn't work if it's
voluntary. It must be mandatory.

DR. BURNLEY: Yes.
CHAIRMAN WATKINS: It does not work?

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MR. REINER: No, of course not.

DR. BURNLEY: No. In most instances, persons who are
in custody -- I hear anecdotally from other prosecutors that
they feel absolutely hamstrung, because it's the rare rapist who
will admit to or consent to any form of testing voluntarily.

CHAIRMAN WATKINS: Well, thank you very much. We're
going to have to close down for lunch. We thank this panel very
much. I think it's been one of the most impressive panels we've
had and it has filled in a lot of voids in our own thinking, I
believe, over the months that we've been in session here. So,
again, I thank Dr. Crenshaw for assembling this group, and we may
be back to you individually to touch base with you on a few other
questions as we finalize our work.

MR. REINER: Thank you, Mr. Chairman.
DR. BURGESS: Thank you, Mr. Chairman.

CHAIRMAN WATKINS: Thank you very much, and we'll
recess until 1:00.

(Whereupon, at 12:39 p.m., the above-entitled matter
was adjourned, to reconvene this same day.)

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A-F-T=-E-R-N-0-0O-N S-E-S-S-I-0-N
1:10 p.m.
CHAIRMAN WATKINS: Good afternoon.

Let's proceed with the next panel. Dr. Karen Hein is
Associate Director of Pediatrics and the Director of the
Adolescent AIDS Program at the Montefiore Medical Center in New
York. Dr. A. Damien Martin is Executive Director of the Hetrick-
Martin Institute in New York. And Dr. James Kennedy is the
Medical Director of Covenant House and Associate Professor, NYU
Medical School. Welcome to the Commission. We'll open with the
statement by Dr. Hein.

DR. HEIN: Thank you, Admiral Watkins.

The proceedings of this Commission are extraordinarily
important, not only to the American public, but particularly to
those of us who are working in the field of adolescent AIDS. The
very fact that you've chosen to separate this into a separate
part of your deliberations really speaks to the message that we
hope to get across today, namely that adolescents are not big
children and they're not small adults.

What I'd like to share with you today in my second
testimony before the Commission are new data, information that
has not been published, that will be presented at the
International AIDS Meetings next month in Sweden.

What I'd like to do during my brief introductory
remarks are to basically deal with the following four points.
One, that the current emphasis on prevention in adolescents is
very appropriate but we must recognize that this epidemic has
already hit adolescents.

Two, that the profile of this epidemic differs in
adolescents as compared to children and adults and it differs in
the patterns of spread, the nature history of the disease, the
types of services needed to attract and retain teenagers and the
types of interventions both in and outside of school.

Three, that adolescents are a very heterogeneous
group and that risk varies enormously from one teenager to
another. Our response then must encompass all of the spectrum of
risk within adolescents.

Fourth, that policies that have already been
instituted have already profoundly affected teenagers, but we
haven't come to grips with what those policies are nor their
impact on teenagers. I'm referring to the mandatory testing

175

 

 
 

 

policies of the military, Job Corps and Peace Corps. The
response to this particular challenge is very important because
some of us feel that adolescents are, in fact, the fourth wave of
this epidemic. After the homosexual male, the IV drug user and
children, the wave of adolescents is forming and ready to crash
on our shores in the very near future.

What I'd like to do then is to go through these four
assertions to give you recent data to support that adolescents
again are not big children and they're not small adults. So,
the first, that this epidemic has already hit adolescents. You
don't hear about that much. You hear about children and adults.
In The Washington Post today, there's an article about
adolescents and AIDS. We've reproduced it for you and it's part
of your procedural notes. What I'll share with you is an update
from that preliminary information that was just analyzed very
recently. Peggy, if we could have then the first slide. What
I'm going to share with you is a collaborative effort by three
agencies. It's all set up. Just advance the first slide, one
forward. It should be set up. Good.

The collaborators are people in our own adolescent AIDS
program at Montefiore Medical Center, people from the Centers for
Disease Control, and the New York City Department of Health.

What we've decided to do is to take a look at this epidemic in
New York adolescents compared to the nation. Unfortunately, we
think that in many ways New York is ahead of the nation. What we
do see in New York is likely to been seen in the rest of the
country shortly.

The next slide, Peggy. Here we have data from the
beginning of the epidemic in 1979 all the way through last year,
to compare the reported cases of AIDS in adults over the age of
21, children up to 13 and adolescents. What you can clearly see
from this graph is that the adolescents and children have come
together. There are just as many reported cases in adolescents,
13 through 21, as there are in children.

DR. LILLY: Is that a log scale?

DR. HEIN: Yes. The ordinate is a log scale. So,
this is a semi-log plot. The second point from this graph is
that the rates of change over time parallel in adolescents what
is occurring in adults. The doubling time in adolescents was
about six months in the early part of the epidemic and now is
about a year.

On the next slide, we can see what's happening in the
nation compared to New York City regarding adolescents 13
through 21. There were no reported cases prior to 1981, and then
only a handful. By the end of '87, there were close to 700 with
20 percent of the cases being in New York City. This only has

176

 

 
 

three percent of the population. So, there are two points to be
made from this graph. First of all, there are many reported
cases in this age group. Second of all, when one looks at New
York as 20 percent of the cases, that means 80 percent are
outside of New York in the rest of the nation. We'll take a look
at who those people are and what kinds of risk related behaviors
are they engaging in.

The third point, that if we could just say no to sex
and drugs, that we would eliminate this epidemic among
adolescents. To counter that assertion, I'll show you on the
next slide a quote from June Osborn. "There's never been a
society in which the patterns of sexual behavior were restricted
solely to monogamy or chastity, and America in the 1980s is
surely not going to be the first," particularly regarding
adolescents. Even if we were to delay the age of first
intercourse, we are not going to eliminate intercourse during
adolescence.

Let's look then very briefly at the implications or the
effect of having intercourse in adolescence. On the next slide
we have a graph that shows the reported cases of gonorrhea then
on the long access against age that shows that the highest rates
in the 1970s for reported cases of gonorrhea were in teenagers,
not in adults. When you correct for what percent of teenagers
have actually had intercourse at ages 10 through 14 or 15 through
19, since no everyone has. But in those that have, they have the
highest rates of chlamydia, of pelvic inflammatory disease, of
syphilis and of gonorrhea. Why then shouldn't they in the near
future have the highest rates of HIV infection?

On the next slide, drugs. Here are the results of a
survey from the University of Michigan. High school surveys
done all the way through the '70s and '80s showing the change
over time in high school students of alcohol, Marijuana and
cocaine and drug use is down in high school students. What does
this mean vis~-a-vie the HIV epidemic?

Crack use is up in the inner cities and there's a real
link between crack and AIDS. The link goes like this.
Adolescents sometimes sell themselves for money to buy drugs or
to get drugs. So, it's not just the intravenous use of drugs,
but clearly the link with such other drugs as crack. Also,
alcohol and marijuana, which may alter a teenager's judgment and
make them participate in risky behaviors that they otherwise
wouldn't. So, what can we say then about not the number of
reported cases of AIDS in adolescents, but how many kids then
could be infected?

On the next slide, I'm showing you a way to think
about estimating the number of HIV infected adolescents. We'll
read it from left to right. The number of infected adolescents

177

 

 
 

really depends on three factors. One, the number of susceptible
teenagers. So let's take sex. More than half of the teenagers
have had intercourse by the age of 19. Among black urban
adolescent females, it's 80 percent. So, we do have a
susceptible group of teenagers.

Then we have the number of infected contacts. This has
two components. Firstly, the number of contacts and, secondly,
the likelihood of infection. Number of contacts. Some
teenagers are what we call sexual adventurers, lots of partners
during adolescents. In our first six HIV positive teenagers,
they had a range from no sexual partners to 28. So, we do see a
tremendous range in adolescents.

Among the so-called sexual adventurers, as portrayed by
Sorenson in the '70s, they had an average of 17 partners during
their adolescence. In a more recent survey of homosexual teenage
boys, they had an average of seven partners before they were 19.
The average age of their partners was two to three years older
for the heterosexual adolescents and seven years older for the
homosexual adolescent male. So, we begin to see some bridges
between the infected adult population and the adolescent
population.

Lastly, we have the transmission coefficient. Anal
intercourse obviously has a far greater risk than vaginal
intercourse than oral intercourse. But these forms of
intercourse, all three, we only are beginning to learn how common
they are in adolescents. As an example, a recent survey in New
York, in an adolescent medicine clinic showed that 25 percent of
the heterosexual teenagers had had anal intercourse, but two-
thirds of them did not use condoms. This is new information and
we don't know how to compare it to anything before we didn't have
any information on such risky practices as anal intercourse, or
even such not so risky practices as oral intercourse in
adolescents prior to the studies that are being conducted right
now.

The other thing that we can learn from this formula is
a very important message I feel for you the Commissions. That
is, tomorrow you're going to be hearing a lot of testimony on
behavioral change. That really addresses that second factor, the
number of contacts. Let's say we could reduce the number of
sexual partners and contacts in adolescents from something to
something less. Is that going to do the trick? No, because the
likelihood of infection, the sero-prevalence of this virus is
going up and up and up in certain parts of the country, New York
as an example. So, even a couple of partners if you're an
adolescent, if you're having sex with somebody who's infected
are plenty to become infected. So, it's this balance between
where you're doing the activity and how common is the virus.
That's where I think adolescents are going to be in trouble.

178

 

 
 

| To move on then, let's look at who are the reported
cases of AIDS in adolescents 13 to 21 regarding their risky
behaviors. What are the differences between teenagers and
adults?

On the next slide, we have a chart that shows for all
the years of the epidemic, what do adolescent cases look like in
the U.S. compared to adults? The largest group in both age
groups are the homosexual or bisexual male, but quickly there a
difference then with the second leading cause in adolescents for
the country being transfusion related. I'm sorry, for
adolescents. And the second leading cause among adults is IV
drug use.

Let's look at New York, again the leading edge of the
epidemic in adolescents on the next slide. These slides are all
set up the same way so that all the green bars will add up to
100 percent. So, all the adolescents in the U.S. compared to the
blue in New York City. What we see again for adolescents in the
U.S. compared to New York is that still the homosexual/bisexual
teenager does account for the largest percent of cases as shown
on the left bar. But we have a difference in New York where the
transfusion related people for the rest of the country are number
two, but the IV drug user in New York is the second leading
cause. Transfusion related cases are mostly linked to
hemophiliac boys.

The next slide shows what happens when you separate the
males from the females. For the sake of time, I'm going to skip
this and go right on to the females because it's the females, on
the next slide, that really make a very scary point. If you look
at the tallest bars among female adolescent reported cases of
AIDS, you see that it's the heterosexual bar that's the largest.
Roughly half of the reported cases in the U.S. and in New York
among teenage females are heterosexually spread cases.

Now, let's take a look at these numbers and what don't
they tell us? These are reported cases of AIDS. If the average
latency is five to seven years, the very fact that we have any
cases of AIDS in adolescents should be very scary because the
majority of teenagers infected won't become sick until they're
into their 20s. We see this jump from one percent of reported
cases in teenagers to 20 percent of people in their 20s.

I think the fact that we have already seen this among
such a small number of cases though perhaps makes the point best
of all, that what we are going to see in adolescents, we don't
want to wait the five or six or 12 years to have to document in
cases of AIDS. What we know about other sexually transmitted
diseases and what we can already see from these reported cases
tell us that the profile of this epidemic is different in

179

 

 
 

 

teenagers. It is, in fact, similar to the dreaded heterosexual
spread that everybody says isn't occurring in adults. Four
percent of cases are heterosexually linked in adults, eight
percent in teenagers in the nation, 15 percent in teenagers in
New York City, but half among females. So, those are the
statistics. What can we then say to bring this together and
highlight the problems that you'll then be considering this
afternoon and tomorrow? They are the following. If I can have
the next slide. Teenagers live in our society. They're going to
be exposed to ads like this the same as the important messages
that I'm sure the Commission will back as to the appropriate
educational messages for teenagers.

The next slide? That like this cover of Newsweek,
"Kids and Contraceptives: A Moral Dilemma. How to Prevent Teen
Pregnancy and AIDS," that AIDS is a bit of an add-on, that people
who are concerned about adolescents have to gear up for AIDS
education, that people who are concerned about AIDS have to learn
something about teenagers. That's going to take time. It's
going to take money and it's going to take people saying that
teenagers are different from little kids and adults.

The next slide? A cover from the Daily News in New
York, "Second Thoughts on the Sexual Revolution." Kids are
changing their sexual behaviors from what we can tell, but they
don't seem to be changing the ones that count. We do seem to be
giving them the kind of information that's changing behaviors
that don't put them at risk at all. We can think about
outercourse and intercourse. Intercourse is risky, whether it's
oral, anal or vaginal intercourse. utercourse, massages,
touching, being touched, petting, masturbation, these are not
risk related.

So that we don't entirely suppress and knock out
sexual expression in teenagers, we have to create a balance to
encourage those sexual behaviors that don't put teenagers at risk
and help them identify and avoid those that may put them at risk
or take those precautions as best as we have them to help them
reduce risk.

The next slide. A year ago, an article in Education
Week based on testimony before the House Select Committee on
Children, Youth and Families, Koop warned of an explosion of AIDS
among teenagers. Some of this information was around a year ago.
People weren't ready to hear it. The fact that the Commission
again has chosen to highlight the issues of adolescents we hope
will bring the ear of society to these special needs.

The next? Science, the cover of Science, finally
adolescents made it to the cover. But you won't find much on
AIDS and adolescents inside the medical journals as yet. There
have been no scientific studies similar to the epidemiologic

180

 

 
 

analysis that I've shared with you that have been published about
teenagers at all in the medical literature.

So, what's our response in New York? On the next
Slide is a summary of our own adolescent AIDS program, the first
in the nation to specifically focus on the impact of the epidemic
in adolescents. We have clinical services geared up for high-
risk and HIV positive youth, are involved in research and
advocacy, including what we're engaged in today, a dialogue
about teenagers and their special risk.

Jim Kennedy and Damien and I and others have formed a
network in New York of concerned agencies to work together, to
learn from each other, to help in the referral of patients, to
create and to promulgate policies regarding AIDS in adolescents.
We've done it in New York. We feel, as Admiral Watkins has been
suggesting to other parts of the country, that this kind of
networking should happen even before there's a problem in a
school with a teenager. We've done it and we've learned from it
and we've benefited and hopefully so have the young people that
we serve.

To end then, I'd like to show on the next slide a very
brief history of AIDS in adolescents. As you can see, it
doesn't go back very far, only to 1986 with the Institute of
Medicine report that mentioned the need to educate teenagers.

The Surgeon General's report, again, obviously brought great
controversy, but talked about the need for prevention in children
and adolescents. Last year, the Surgeon General's workshop, 12
workshops, only one on adolescent prevention and education. And
then others that have begun to bring teenagers to the forum.

I've included, as you can see, in 1988, the
Presidential Commission on the HIV epidemic because your hearings
in February and March did include people who spoke to these
issues. But again, the fact that you've broken them out is of
great importance to us and to the young people.

So, in summary, on the next slide, which is blank, I
would like to highlight five of the recommendations that are in
your prepared notes. The recommendations in your notes are
broken up into immediate, intermediate and long-term agenda for
research, action and education.

The five I've selected today are firstly about
counseling and testing. There are mandatory testing policies
already in place for teenagers. The Job Corps, the military, all
of its branches, and the Peace Corps are all doing entrance
screening and testing of enrolled individuals. That type of
mandatory policy has not been instituted to a large extent in
adults, and yet what are the effects on adolescents?

181

 

 
 

 

Currently, if you're found to be positive while you
enter the military, in the screening procedure, you're not
permitted in, but neither are you offered follow-up services.

You are merely informed that you're positive and in New York just
given the number of the AIDS hotline. Is that what we want to do
for our high-risk and HIV positive teenagers? Do we not want to
at least link them in with the kinds of services that will enable
them to get help, to help them in partner notification, to get
them enrolled in the kind of treatments that will make sense for
them?

Two, drug treatment facilities for teenagers. I know
you've had long testimony and in your interim report highlighted
the needs for drug treatment centers.. What about adolescents?
Most of them, under 18, are not even permitted in methadone
maintenance programs. Only a couple take minors. Crack
programs, almost non-existent for teenagers.

Three, the clinical trials of the new medications,
including AZT, are not open to teenagers 14 through 17 years of
age, only to children and adults. It's not malice, it's just
that protocols haven't been approved for teenagers. So, we can
maybe prescribe AZT, but we don't know if it works, we don't know
the right dose. But what we do know is that the dosing schedule
for most medications, antibiotics, pain medications, all of them
have a very different dosing schedule in teenagers as compared to
children or adults. We need to get these protocols approved so
that we can learn what's the best way to treat an HIV positive
hemophiliac male, an IV drug user, a gay male or any teenagers
who's infected. Four, again, the behaviors that are changing
aren't the ones that count.

Fifth, we don't have a clue about what AIDS looks like
in teenagers, what HIV infection will look like over time. Will
they be like the little kids, get sick and die within a couple of
months or years? Will they be like adults and stay healthy for
awhile, but then get sick? We don't know. Some of the
preliminary evidence of hemophiliac males is that they may stay
healthier longer than adults. But does that mean that they're
equally or less infective? They may be more infective. So, I
make a case then for the need for the kinds of natural history
studies to learn about this disease in teenagers because it's
likely to differ.

So, in summary then, how should we think about the 35
million or so teenagers that we do have in the country that are
not all at equal risk for this virus? On the last couple of
slides, I have a model that summarizes for you how we could
divide up all the teenagers in the nation by degrees of risk.
The outer circle, those teenagers who are not at risk by virtue
of the behaviors that they engage in, and they're not at risk
because the virus isn't there yet.

182

 
 

 

The next slide. Do we have something to do for them?
Sure. They're the worried well. They're kids who may enter the
risk group soon. We have a long way to go to reach then, again,
to make them feel okay about the things that don't put them at
risk. The next, the middle circle, those teenagers who are risk
but there's no virus yet where they are. Again, to remind you
that most teenagers have had intercourse by the end of
adolescence and again the rates of VD and pregnancy, of course,
are high. On the next, who are these teenagers and what should
we do for them? Those teenagers who are having other sexually
transmitted diseases especially need the kind of information and
discussion about the need for barrier methods and some discussion
about testing and the proper counseling for teenagers that
probably should differ from adults. Maybe people shouldn't be
able to have a test on their first visit. Maybe for a teenager,
they need time to think about the implications of being tested.
So maybe two sessions should be a minimal requirement for
teenagers.

The next slide. And to help them for those who are
going to have intercourse and for those who want to or need to
use barrier methods, to help them learn how to do this
effectively, how to bring it up to their friends, both for boys
and for girls. There are some beginning to be models of how we
might do that. I'm sure you'll hear about them tomorrow.

Back to our inner circle, for those teenagers that
have both the risk and the virus and either are infected or could
be today or tomorrow. The three circles then represent how they
become infected, through adult homosexuals and bisexuals, adult
Iv drug users and their partners. But we already have seen
these bridges to adolescents, as I've shown you, and already
we've seen adolescents giving the virus to other adolescents.

So, once it's in the adolescent community, our expectation is
that it will spread quickly. But we won't know for probably many
years to come.

The last slide, at the moment, the innercity minority
youth do seem to be the ones that are disproportionately affected
as reflected in AIDS cases. But certainly again, given other
sexually transmitted disease patterns, this is not going to be a
long lived imbalance because sexually transmitted diseases are
spreading everywhere in adolescents.

The very last, don't forget about teenage pregnancy
being another risk for babies having HIV infection as well. Ten
percent of the babies born with AIDS in New York City with HIV
have teenagers who were moms under the age of 21.

So, in summary, and the very last slide, we think of
New York City as being the root of all evil perhaps, that it's

183

 

 
 

PO

only in places like New York that people have to worry about AIDS
or about HIV. It is true that young people can travel to New
York. But let us not forget that this virus can travel other
places with teenagers as well. Thank you.

CHAIRMAN WATKINS: Thank you very much, Dr. Hein.
CHAIRMAN WATKINS: Dr. Martin?

DR. MARTIN: I thank the Commission for the
opportunity to address them. I represent the Hetrick~Martin
Institute which was formerly the Institute for the Protection of
Lesbian and Gay Youth. We serve gay and lesbian youth and their
families. We offer a range of services including individual,
group and family counseling, socialization, referral, education.
We run the Harvey Milk High School for kids who are forced out of
school because of their sexual orientation.

Specifically for this testimony, we have offered AIDS
and risk reduction education for over four years. In addition,
we run a street outreach program to homeless youth and juvenile
prostitutes. It is important to note that the two are not
synonymous. Our data indicates that 25 percent of the clients,
the juvenile prostitutes, that we serve on the street, the male
juvenile prostitutes live at home.

Now, the clients in our regular programs are from
primarily working and middle class families, although they range
from the poverty stricken child to the children of wealthy
parents. Forty percent are black, 30 percent are Hispanic, 25
percent are white,- two percent are Asian. I mention these
figures because this pretty well matches the range of ethnic and
racial background that you find in the public schools. No matter
what sociological parameter we find representing the adolescent
population in New York, we find reflected in all of our clients
that come to us. So, we are getting a good sample of clients
across that range.

The street outreach program, however, is slightly
different. Forty percent of those clients are black, 50 percent
are Hispanic and only ten percent are white. Now, I should
mention, overall 60 percent of our clients are male and 40
percent are female.

Now, those who know very seldom speak of high-risk
groups anymore, but rather of high-risk behavior. Now, there's
certain issues for various groups, however, that do increase the
probability of high-risk behaviors. I'm going to address
primarily the issues of gay and lesbian youth, but many of these
things apply to all adolescents, and especially certain subgroups
of adolescents.

 

184

 
 

 

Gay and lesbian youth have three major problems:
isolation; family problems; and violence. All three are related
to the stigmatization of the homosexually oriented, all three are
related to high-risk behavior in many of our adolescents.

Let me give you one example of this. You have a 14
year old boy in the Bronx who realizes he's gay. He doesn't
dare tell his family because at the very best there will be all
hell to pay. At the very worst, and we deal with a lot of kids
that this happens to, he'll be beaten up and thrown out on the
street. So, all of a sudden he's in the unit that has supported
and nurtured him all his life. He's now a stranger there. He
has to lie in every relationship. He becomes completely isolated
within the family.

He doesn't dare let the people in school know that he
is gay because he runs the risk of humiliation and violence and
not just from his peers either. We have documented cases of
teachers doing this. So, he's isolated in school with his peers.

He doesn't dare go to his religious groups for the
most part because, unfortunately at the present time, most gay
and lesbian adolescents and most gay and lesbian people view the
organized religions in this country as the leading force in our
stigmatization.

So, here you have a 14 year old who has no-one to talk
to, no one to deal with and must constantly hide. He hears
there are gay people down on 42 Street or the Piers. So he goes
down there, not looking sex. He's looking for some kind of
release from this terrible isolation that he's facing. So who
does he meet on 42 Street and the Village and the Piers? Not
your average gay and lesbian person. They'll run screaming into
the night if an adolescent comes near them because the most
effective slander that's been used against us is that we're
recruiters, that we are child molesters and so forth.

So who do they meet? They meet the johns and they
meet the pedophiles, the pederasts, the pornographers and the
other street youth. They enter into a society where they learn
to use sex to make social contact. Sex is the way in which they
get their release from this isolation, sex is the way that they
finally begin to belong.

Now, this has been known for years, that thousands of
gay male adolescents place themselves in the most dangerous
situations, dangerous from the point of view of disease, from the
point of view of violence. No attention has ever been paid to it
really. What did get attention in this country in the media?

Two boys trying to go to the prom together. Two boys try to do a
simple social act that does not involve sex and you'd think that
the foundations of the republic were going to tremble.

185

 

 
 

 

What was the other big brouhaha? When we opened the
Harvey Milk High School. We got 26 kids off the street and into
a classroom. And again, you'd think the foundations of the
republic were going to tremble because they were gay.

We worked with one such adolescent. We reached him
after he had hit the streets, after he had dropped out of
school, after he had been alienated from his family. We gave him
counseling, we enrolled him in the Harvey Milk High School, we
reconciled him with his family, we helped him get a job, we
helped him get an apartment. He graduated from the high school
in June. He was diagnosed with AIDS in July. He was dead in
August. Unfortunately, we got to him after HIV did.

Virtually all risk reduction programs ignore the needs
of gay and lesbian youth. By the way, I include in that many of
the programs in the gay and lesbian community. All right?
Indeed, virtually all risk reduction programs ignore, in the
schools at least, the existence of gay and lesbian youth. A
significant portion of the adolescent population at high-risk for
high-risk behaviors is ignored. Now, that is not appropriate
behavior in an epidemic.

We've outlined our program and some of our suggestions
in detail in the testimony that you have here. I do want to make
several recommendations though in this oral testimony. If we're
indeed serious about protecting young people, we must take
certain steps. Among these are, first, needs surveys should be
developed and carried out that will address the problems and
issues of AIDS education and risk reduction education as seen by
professionals who deal with children. The data obtained from
this should be used in the development of educational and service
delivery strategies.

Second, the special problems of special populations,
especially as they relate to AIDS education and risk reduction,
must be defined and acted upon. It's not just gay and lesbian
youth that are a special population. There are special problems
with the teenage mother. This has been known in the parenting
programs for a long time. Each special adolescent population
must be defined and those issues that lead to high-risk behaviors
must be addressed. Information about condoms is not going to
solve the problem.

Bureaucratic delays and the development and delivery of
appropriate materials must be eliminated. Ideological
considerations over factual information and education must be
fought at all levels. No group should be excluded from access to
accurate information and training. Specifically, gay and lesbian
youth cannot and should not be ignored in the battle against HIV
infection. Programs and attitudes that consider the

186

 
 

stigmatization of the homosexually oriented to be more important
than the lives and gay and lesbian youth can no longer be
tolerated. It must be recognized that one cannot simultaneously
stigmatize a population and deliver appropriate educational or
other services to that population.

Now, the members of this Commission must know what it
means to be discounted even before you've done anything. Many
in the AIDS service community and in the press and in other
things wrote this Commission off as a purely ideological group
serving only the special interests of certain groups. Do not, we
implore you, write off at this critical time, a most vulnerable
population. This population must first of all be recognized.
Hundreds of thousands of gay and lesbian youth in this country
need to have their needs recognized. They need to be recognized
aS a special population having special educational needs. Denial
of their right to service and accurate information is immoral,
unethical and dangerous. Thank you.

CHAIRMAN WATKINS: Thank you, Dr. Martin.
CHAIRMAN WATKINS: Dr. Kennedy?

DR. KENNEDY: Yes. Good afternoon. I'd like to thank
you very much for the opportunity to come here and speak to you.
I would like to talk about perhaps a very narrow area of the
issue of AIDS in adolescents, coming directly from my experience
as a medical director and doctor serving the youth of Covenant
House.

Covenant House is a large child caring agency which
provides emergency shelter to homeless and runaway youth, to
youth we now usually refer to as street kids. We have been
doing this in New York City for close to 20 years. We have sites
also in Fort Lauderdale, in New Orleans, in Houston and very soon
we will open a program in Anchorage. We also have a very large
program in Toronto. I can only speak from my perspective as a
medical provider for this population of children and youth and I
would like to try and explain to you what our experience has been
in the last two years since the AIDS virus has had an impact on
our operation.

Many people through the years have asked me what
pathology or what problems I see in our clinic. The answer was
always pretty straightforward. It's not what you would see ina
school based clinic or a school based population. We dealt with
a lot of violence, particularly traumatic assaults, physical and
sexual assaults. We dealt with a lot of STDs for years. We
have, in the last three years, seen a tremendous rise in the
incidence of gonorrhea and syphilis, as Dr. Hein has mentioned.
We saw a great deal of teenage pregnancy and problems with the
young babies related to poor prenatal care. There was an enormous

187

 

 

 
 

 

amount of psychiatric and psycho-emotional disturbance among the
youth. There was substance abuse. There were infestations and a
lot of other illnesses.

In 1984, there was the arrival of crack. Crack raised
the stakes for street kids enormously. Crack has produced its
own pathology, an entity known as crack lung, a recurrent
infection in chronic crack users which is very difficult to
treat. At the point in 1984 and '85 where crack has spread
through street youths, I really thought that that was about as
bad as it could get.

In the spring of 1987, we started seeing residents of
Covenant House and our clinic who clearly had HIV related
illnesses. Lymphadenopathy, night sweats, weight loss, fevers,
thrush, et cetera. We had resisted for a good long time the idea
that we should test adolescent youth, especially street youth,
for this virus because we weren't sure what we would do with the
result or what resources would be available for those who were
proven to be infected. But when we started seeing children who
clearly had AIDS-related illnesses, it was medically necessary in
many cases to find out just what their situation was.

We began testing specially selected youth who were at
risk for HIV infection. Six of the first ten we tested were
positive. We tested an additional 40 and found that overall 40
percent of the youth were positive. At that point, because of
the number of positive tests that we had and the number of youth
we knew to be infect and because of the way they were consuming
the resources of the agency, we suspended that type of testing.
We simply did not have the people to take care of the number of
youth that we were seeing who were infected and indeed were
getting sick and in one case have died. Today, we have two
residents in the hospital with AIDS.

What we were able to do once that experience had come
upon us, was to look back and see who these kids were, see what
that might tell us about what to expect in the future. Some
very good news came out of that look-back. That was that there
were very few 13, 14, 15 and 16 year olds who were infected.
Therefore, as many people have said, prevention in that age group
is probably the single most important thing that many people can
be doing. I am not here to speak to you a great deal about
prevention because my problem really is the kids who are infected
and the kids who are already getting sick.

That's the bad news about our look-back. The children
who Covenant House is treating who have been infected with the
AIDS virus and are sick are very problematic children. They are
very problematic adolescents. They are tremendously
disconnected from society and they are, in most cases, totally
disenfranchised.

188

 
 

 

What you see when you look at the case records of
these children who are infected with this virus is poverty is a
given, familylessness is almost universal, shelter, no shelter.
Then, when you look into the developmental stages of what was
going on in their family during their development, you see that
there were frequently substance abusing parents, that there was
often violence in the home. These parents frequently had
psychiatric or criminal problems which interfered with their
ability to be parents. And you also see very frequently that
sexual orientation conflicts were active in initiating to
dissolve the bonds that, if there was a family, held it together.

From that family background, being abandoned to the
street was not a difficult next step. Most of these children
were abandoned to the street at some point in their life, usually
relatively early, when they were 13, 14 or 15. Abandonment to
the street quickly means exploitation on the street. Specific
exploitation by people who want to use children, especially young
teenagers, especially young teenage boys, for sex, and also
exploitation by people who want to use these same children and
youth in the drug industry. If you are on the street for any
period of time, you become involved in street life. Street life
is violence. Street life is sex, usually sex for money. Street
life is drugs, drugs for comfort and drugs to make a living,
selling drugs. And street life is involvement with the criminal
justice system, usually at an early age.

It is really true in our experience that the statement
"modes of transmission of HIV virus" could be a euphemism for the
lifestyle forced upon children abandoned to the street. That has
been our experience over and over again and it certainly is true
in every one of the cases that we have found to be infected with
this virus.

Because we had identified this problem in our clinic
and were concerned about the implications for the future of the
agency, we joined the New York State Department of Health in
attempting to do a scientific analysis of the sero-prevalence in
the population. We were able to look at the blood specimens of
all of the residents who came to our clinic for the first time
for a health assessment and had a serologic test for syphilis.
We were able to look at those blood specimens for infection with
this virus.

To date, we have tested about six or 700 of those
specimens. The New York City Department of Health considers the
data preliminary and not large enough to speak with confidence
about individual groups. However, overall we can say that the
sero-prevalence in this population of adolescents is in the
vicinity of eight to 12 percent. If you look at the younger
groups. you will see that eight or nine percent of the boys and

189

 

 
 

 

girls are infected. If you look at the older adolescents, the 19
and 20 year olds, if you look at the 20 year old males, the
largest group, you'll see 14, 15 or 16 percent. We're not sure
where the exact final data will be, but it is in that range.

So, for street youth coming into medical care and
shelter at Covenant House in New York City, the floor, the bottom
of sero-prevalence for this virus is somewhere around seven and a
half to eight and a half percent. We all know that sero-~
prevalence, if it rises or even if it doesn't rise, has the
effect of causing incidents of both HIV infection and AIDS to
rise faster if there is activity going on which transmits the
virus. That in this population has already been stated as a
given.

We have therefore identified a significant problem and
we have started thinking about solutions. We are here today to
offer some of those ideas to this panel. Prevention, as I said,
especially for the younger children who are involved in street
life, either intermittently, going back and forth from a family,
or permanently, is essential. Real prevention would start, of
course, in the troubled at-risk family, not with the youth once
they have been abandoned or nearly abandoned to the street or
before the family has reached a stage that is probably not
salvageable.

But as a said at the outset, I would like to speak
particularly about those who are already infected and those who
are already sick, the teenagers who are the first casualties ina
real sense of the AIDS epidemic in New York City, and we think
very certainly in our other sites and all the major cities in
this country.

Survival is very much a word that is used on the
street. The kids all say they have done what they have done to
’ survive. They say it over and over again. It is ironic that sex
for money or sex for drugs is often cited as the safer choice for
street kids. The safer choice in this incidence has led to
infection which greatly threatens survival.

What kind of a program would be necessary for this
population which we think is significant already in New York
City? Well, the program to begin with has to deal with
familylessness and shelterlessness. So, you need a residential
program that is comprehensive and you need a program which
attempts in some way to reconstruct the structure, the values and
the safety of a family, the support of a family.

Working with street youth, one thing you learn over and
over again is that contact between a caring, responsible adult
and the adolescent is very important. Without the contract, the
human contact between this person and the child, the rest of your

190

 

 
 

program will not work. You have to design a program that in some
way recapitulates the developmental loss that the adolescent has
suffered.

At Covenant House, because of these youth that we are
serving and because we cannot find other resources, we have
decided to set up an AIDS dedicated unit, a residential unit
which will have 26 beds for youth who are infected or sick. It's
a small, small start, but it's absolutely necessary today because
there is no alternate resource at this time. We hope that the
experience we get from setting up this unit will help ourselves
and other agencies with which we network to duplicate the work.

So, for this group of youth, HIV infection and AIDS is
a very real problem. I see it as something which progresses from
familylessness to abandonment to exploitation and street life and
street life produces infection.

I would only add as a final note that I hope that
people who bring government resources to this problem have the
wisdom to come to the experienced and the hardworking people who
have been doing this for many years. There is no easy way to say
this, but really until the AIDS virus came along, we didn't get
a lot of attention paid to the effort.

There are people who know these kids very, very well.
These folks here in New York City, the Bridge in Boston, Sasha
Bruce here in Washington. The problem is not a New York City
problem. When it comes time to work out the solutions, we do
hope that people will come to those of us who have been at it
for awhile, share our experience and join in a partnership in
dealing with this problem. Thank you very much.

' CHAIRMAN WATKINS: Thank you, Dr. Kennedy.

CHAIRMAN WATKINS: Before we open the floor to
questions with Dr. Primm, I'd like to praise Dr. Hein for, one,
her dedication to this field of AIDS and adolescents. She and I
had the opportunity to meet each other on the Carnegie Council of
Adolescent Development. I've watched her perform incredible
service for the nation. She gave a good bit to cDc in response
to a request for proposal. She won the Adolescent AIDS contest
there and the nation is well served as a result.

This is very, very valuable information. There has
been great speculation within the Commission and others about
the significance of this for the future of the nation. So, this
is the first touch of hard data that we've received and it's been
very difficult to come about. So I hope that before the
questioning is over we'll be able to again listen to you as what
we might be recommending in terms of epidemiological data that

191

 

 
 

 

needs to be gathered, how we would do that. You've been working
with CDC, so it would be very valuable input for us.

I'd also like you to explain, if you would, to the
Commission what is an adolescent. Because, I believe that as we
-- as you know, on the Carnegie Counsel we had quite a debate as
to how to define that period because of the difficulty in
defining the gray areas of transition from childhood to -- and
the stretch-out period that we're seeing in adolescent
development over such a period of time.

Adulthood is a difficult point in life to define, so I
think it would be useful -- well, we came down to 10 to 15 year
old focus for our effort. It hardly defined adolescent in terms
of just ages alone, so would you give us just a run-down on that
before we start the questions?

DR. HEIN: Okay. So, for a definition of adolescence I
would say the first question back to you is, what's the question?
And then, we can define the answer for that question.
Essentially, adolescence might be defined in three dimensions:
related to services for adolescents, related to laws about
adolescents, and related to consent issues.

What I mean by that is, services, because we're talking
about AIDS, let's talk about services for teenagers. Teenagers
might fall into the services for children. The American Academy
of Pediatrics defines the role of pediatricians to care for
people through 21. So, there's a definition of adolescence. For
pediatricians, it's from puberty to 21.

Other services for adolescents, when it comes to the
military, you can begin an enrollment process at 16 but you're
not officially in until 18 when you've reached the age of
majority. So, that's a service program that defines adolescence
Slightly differently.

The law. Laws regarding adolescents vary depending on
which thing. You can drive at a certain age. You can drink at a
certain age. You can get married at a certain age, and so forth.
So, those vary not only in terms of which thing, voting, driving,
whatever, but also some of them from state to state.

The consent issues are very relevant to the AIDS
epidemic. At what age can you give consent for HIV testing? At
what age can you give consent for treatment? At what age can you
give consent for enrollment in a research protocol?

So, these ages, again, the arbitrary one tends to be
18, but we have some subcategories, some special situations,
what we call the emancipated minor, somebody under 18 who for the
purposes of the law is like an adult. The emancipated minor is

192

 
 

somebody who is living independently, who has born a child, who
is supporting himself or herself, or who is in the military. So,
these are people under 18.

And then, we have the mature minor, those who are
deemed to understand the nature and consequence of whatever. For
purposes of, let's say medical consent, they can sign for
themselves.

So again, we have service definitions. Often we talk
about the early, the middle, and the late adolescent. Early is
kind of the 11 to 14; middle, 14 to 16; and older, 17 to 21-
ish. And then, we have the law, and then the consent issues that
are very special.

CHAIRMAN WATKINS: Thank you. I think it's very
important we understand that, because I think it's in the mind of
the beholder in many cases. It's interesting that you put it in
that context so we can focus in our minds what we're talking
about here when we talk about AIDS in adolescents. Dr. Primm?

DR. PRIMM: Dr. Hein, in what category would a young
woman fall that would be, say, 16 or below, who had a child, who
had given birth to a child? Would she be considered an
emancipated minor?

DR. HEIN: Yes, she would.
DR. PRIMM: By virtue of the birth to the child?
DR. HEIN: That's correct.

DR. PRIMM: That frees her so she's able to do
whatever she wants to when she becomes a mother?

DR. HEIN: Under the law, that's correct. She can :
sign consent for her child, for medical treatment, as well as
for herself.

DR. PRIMM: Okay. I'd like to ask Dr. Martin a
question. In your written testimony, Dr. Martin, you had stated
that young gay and lesbians have a -- young gay males and
lesbians -- have a problem dealing with the kind of
discrimination and prejudices that they run into on an everyday
basis. You said dissimilar to that of blacks and Jews, who might
run into these kinds of prejudices, that are supported by family,
and who have a sort of cognition over time that allows them to
deal with the stress that goes along with it. What do you do that
would be similar to what blacks and Jews have done over the
years to instruct these youngsters how to handle and challenge
those stressful situations to which they are exposed out in the
world?

193

 
 

 

DR. MARTIN: We have another program, a number of
programs that do this. One is direct counseling where, for
instance, we get an awful lot of kids who come to us who want to
drop out of school because they can't take the pressure of hiding
anymore. They're so afraid that they'll be discovered. They
live in terror. They want to drop out of school. So, we give
them individual counseling to keep them in school.

We have a socialization program whereby they can meet
in a non-neurotic, non-threatening environment and just be
teenagers and interact, with adult role models around so that
they find out that homosexuality is not just a matter of
sexuality. We, for instance, in our socialization program -- and
we use this very much in our AIDS education -- we will show
films, commercial films, and then have the young people discuss
the issues that are raised, for example.

They're not always gay and lesbian issues. One of our
more successful films is Lady Sings the Blues. We have all the
kids watch it. And it's not just for the black kids. The
Hispanic kids and the white kids get into a discussion of
prejudice, self-hatred, the way self-hatred can lead to
destructive behaviors, how you have a responsibility to yourself,
and so forth and so on.

So, we try in our total program to give these young
people the experience of, first of all, as Dr. Kennedy said, a
caring adult. You know, when we first started the Institute, we
interviewed a lot of gay kids to see what they needed. And one
of the things that touched me was, everyone of them at some point
said, "I'd like to interact with an adult without having to worry
about coming across." Basically, that's one of the things we do.
We let them know there are concerned adults, straight as well as
gay. We've always had straight people involved in our agency on
all levels. But, that there are adults who care about them, who
are interested in their problems and will try to help then.

DR. PRIMM: It's my impression that black gay men don't
come out of the closet so easily.

DR. MARTIN: Right.

DR. PRIMM: What do you do for the 40 percent of those
black youngsters that you have in your program when they want to
relate to someone who also might have the same problems of color
and culture?

DR. MARTIN: Thirty five percent of our staff, we have
22 on staff who are black and Hispanic. We have black males. We
have black females. We have Hispanic, Latin women. We have
latin men. We try as much as possible to give them role models

194

 
 

 

of any ‘ind that they can identify with, because we think this is
a very important issue.

DR. PRIMM: Thank you very much.
CHAIRMAN WATKINS: Dr. SerVaas?
DR. SerVAAS: I'll pass.
CHAIRMAN WATKINS: Dr. Crenshaw?

DR. CRENSHAW: Dr. Hein, my first comment is one I'd
like to make very emphatically. And that is that I completely
agree with you that we need a safety net for these kids being
tested by the military and by the Peace Corps. This point has
been brought up a number of times. Certainly, we can provide it,
but the mechanism apparently is not in place or is not occurring.
How can it be done? Who can fund it? What do you suggest?

DR. HEIN: If I understand the problem correctly, it's
one of definition. Namely, let's take the military, that by
deciding to not take responsibility for the recruit who's HIV-
positive, therefore the military has decided that responsibility
ends with informing the person that they're positive. If they
were to become involved in linking with follow-up services, then
they would be taking responsibility. And they've just decided
that's where their role will stop. Now, you've had so much more
experience with the military. You might be in a position to
comment on how we might address it.

DR. CRENSHAW: Yes, Admiral.

CHAIRMAN WATKINS: No, I think that's a flaw in the
system. We're going to comment on that in our final report. I.
think if we go out and recruit people to serve their nation in
uniform and they want to come in and they come in and are then
tested and are found positive, I think the government has a very
strong obligation to insure that the transition to civilian
society is sensitively done, is properly done, and that they
don't release that individual until they insure that all the
proper steps have been taken. It seems to me that's part of the
burden that's on the Department of Defense.

. I do not think it's carried out uniformly well. It is
carried out regionally in some areas, particularly where the
military is prevalent. We've asked the mayor of San Diego, for
example, who feels that it's sensitively done in her region.
That's probably because of the very large population of military
that's there. It's such an overwhelming number that it becomes
part of the entire societal effort. So, I think it's a very
valid point and it's one that we will be commenting on. So,
there is no reason not to insure we complete our responsibility

195

 

 
 

when people who want to come in and serve and can't do it for
physical reasons, are properly handled back in society. We know
it's not done that well in New York City, for example.

DR. HEIN: And then, to answer you question how it
could be done, then, if it were to change at a policy level,
it's simply to identify those region centers that, one, already
have experienced caring for people in the age group and, two, can
either send a person to help in the transition or certainly to
facilitate the transfer by giving out a brochure, a card. So,
for instance, I think all of us would be happy to receive such
military recruits. We're not permitted at this time even to go
on the grounds.

CHAIRMAN WATKINS: It seems to be a proper area you
might comment would be joint test counseling where there would be
a joint linkage at that point in the post-test counseling that
would be jointly done between competent authority in the civilian
sector and the military sector who would share in that so that
the transition would be smoothly handled and the person actually
goes out holding somebody's hand.

DR. HEIN: That would be ideal.

CHAIRMAN WATKINS: That kind of thing seems to me to be
the kind of thing we ought to be doing.

DR. CRENSHAW: I think there's one other obstacle here
that was touched on by Ira Reiner who testified earlier. That is
that I've heard from some of the military that they're very
subject locally to the laws in place. If a recruit does not come
back or refuses to follow up on recommendations, they can't
notify public health or some responsible facility that can
follow-up and help the teenager who is too upset or too
traumatized by the information to follow through on any
reasonable advise. Do you see that as a problem as well?

DR. HEIN: The notification procedure is a second area
that needs to be looked into. Currently at the MEP Center in New
York, if a young person doesn't come back, a registered letter is
sent to the parent of the minor as well as to the young person.
Now, that's quite different than any other sexually transmitted
disease where somebody can come for confidential diagnosis and
treatment without parental involvement in all 50 states. So
there's, again, an area that really needs to just be looked at to
figure out what is the best way to bring help.

But the confidentiality part is only half. The
improper notification that is going on now is clearly the other
half.

DR. CRENSHAW: Exactly. It needs to be done right.

196

 
 

 

,DR. MARTIN: Might I point out that we have dealt with
young people who, through the Job Corps and the military, have
been thrown out on the streets by their family because of this
notification. They suddenly move into another category,
homeless youth who can only support themselves through
prostitution.

DR. CRENSHAW: That's right. It needs to be done in a
thoughtful, responsible and sensitive way. But we need that
safety net to go that one extra step for those kids that aren't
following up and aren't getting the help that the military isn't
providing.

CHAIRMAN WATKINS: A follow-up question, Doctor
SerVaas?

DR. SerVAAS: Yes. On that same subject, we heard
testimony from the state of Colorado, Doctor Tom Vernon and there
they do a very fine job of catching all of the military
applicants who are AIDS positive. I think they have mandatory
reporting of all AIDS positive, I believe, in Colorado. But they
get them with medical attention and we might write to other state
boards of health all over and try to see what they have that
other states could use to catch, since the health problems are at
state level, to get these young people like they seemingly are
doing in Colorado. You might check into Colorado.

We would also be interested in knowing how many other
states are doing that, are picking up the military kids where the
state gets them then and gets them medical attention when they're
AIDS positive instead of just letting them be out on the street.

DR. HEIN: The estimate for New York is somewhere --
well, actually, I think probably you should get that directly
from the military.

CHAIRMAN WATKINS: Doctor Crenshaw, you had another
question?

DR. CRENSHAW: Yes. I wanted to ask Doctor Kennedy a
bit about the exploitation of adolescents by organized sex rings.
As I was setting up the sex offender panel, child abuse panel
that proceeded this one, I learned more about that than I really
wanted to know. Even I had to come to terms with appreciating
the scope of the problen.

I'm wondering, one, how closely linked you are with
some of the bodies like Ken Lanning at the FBI who's trying to
deal with the organizations that are exploiting kids and
blackmailing them through photographs into participating in
sexual activities commercially, and if there's some networking

197

 

 
 

 

going on that can be helpful. Then the part two is one of the
things that he said to me -- he wasn't able to be here as a
witness ~-- that he deals primarily with the children. One of the
things he said to me is that he feels a really lost segment to
the attention of society are the adolescents prostitutes who, as
all of you have pointed out, are there by default, by society's
default, and are considered criminals and prostitutes themselves
but who are actually abused children, sexually molested children
who have exploited in lots of different ways.

It seems to me there ought to be some networking and
perhaps it's going on intensely already. I was impressed to see
that there is so much, that Doctor Burgess has really fine
brochure on children traumatized in sex rings. Pardon the
length of my question, but one of the things that really brought
it to the fore as I was looking into the AIDS related issues of
adolescents. Most of the data, since there's no centrally
collected data on this is anecdotal.

One of the anecdotes came out of the D.A.'s Department
in L.A. who indicated they have so much money and they are so
organized that they import significant numbers of children from
other countries. One man who is at some level in the
jurisdiction process right now who's infected had imported about
a dozen kids, 10 to 12, molested them himself, sodomized then,
and then exported them to different parts of the nation for
commercial sex.

So, it seems to me that this is a wide open door for an
awful lot of problems and you deal with the end result of it and
you're left to try to cope. I think that it would be really
important for us to look more closely at how we can protect the
adolescents who are on the street and who are involved in crimes
for survival as a result of either homelessness or being
exploited by these. I'd appreciate your comment and I could
surely use your help in some direction.

DR. KENNEDY: Well, the distinction between missing and
exploited children and homeless and throw away children and
street kids is a distinction that is often made on legislative
grounds. The brochure you're referring to there comes from an
attorney general's advisory committee which is the Office of
Juvenile Justice and Delinquency Prevention. Many people feel
that the Homeless and Runaway Youth Act really comes out of HHS
and there are lines in the legislation which make it difficult to
cross over the groups.

But as you pointed out, and as we in the care
situation know, the end result is the same. Exploitation is
often the very next step after abandonment. Children don't
choose the street. They aren't lured to the street, they are
abandoned to the street.

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The exploitation takes place on a lot of different
levels. Certainly the john is an exploiter. In New York City
with the intercity population that we deal with, the sex ring is
often a rather small one. It's the pimp or two or three pimps
and the organization that grows around them, although there are
clearly links between involvement in pornography and getting on
the circuit, knowing that when you've done what you can do in New
York, you can go to Lauderdale and you can go to Houston and you
can go to Seattle. There are people who provide the
transportation, people who provide the contacts. Whether that is
organized or disorganized, it's a lot more organized than the
children are and it is exploitation.

At the end of all of that, however it turns out,
particularly for some of the group, there is a point at which
you're net exploitable anymore. That's when you're really just a
homeless street kid. So, we all, when we speak to people in
Juvenile Justice or we speak to people in Human Services in the
city, state or federal level, we all kind'of coax people to think
.of the group as more homogeneous than the legislation does.

DR. CRENSHAW: Are there any recommendations that we as
a Commission can make to help cross pollination and
interdigitation in these arbitrarily separated compartments, as
you were mentioning, been Justice and HHS and FBI, et cetera?

DR. KENNEDY: It always seem to me you just have to
move the paragraphs around, but I guess that's simplistic. I
know that the Office of Juvenile Justice is very interested in
the population that we serve and I know Human Services is also.
I think that however those distinctions got made in the law, they
just have to be dealt with separately when you come specifically
to the issue of HIV infection and services for the HIV at-risk,
the HIV infected, and the HIV sick. As in New York City, if the
first adolescents that we're going to see sick and dying are
really the street kids, and I think it's clear that they are,
that that distinction should not be made in dealing with that
population.

DR. CRENSHAW: I just like to thank you all for your
excellent work. Did you have a comment, Doctor Martin?

DR. MARTIN: Yes, I wanted to make one point. This in
no way is to minimize the horror and abhorrence that we all hold
for the organized rings. But in our street outreach program, one
of the most successful elements of it is we have a shower in our
store front and we give the kids a chance to get clean and we
give them clean underwear. Most of the kids are not involved in
rings. They're out there trying to survive, get something to eat,
to get a shower, to get clean underwear once in awhile.

199

 

 
 

Po

In fact, many of the street outreach workers, and I've
talked to them, in all three programs, Covenant House, Victim
Service Agency and ours, were faced during the very bitter cold
weather that happened this last January where our program went to
the gay and lesbian community and got lots of sweaters and warm
clothes and so forth and the various agencies were distributing
them to the kids on the street.

We were faced with the problem that the kids who were
working the pornography places were in a sense better off. They
were warm, they were being fed, they had a chance to get clean.
The only way these kids had a chance to get those basic things,
I'm not even talking about money or anything, just the basic
things of being warm, getting clean and so forth was -- I mean
Covenant House provides it to a certain extent, but those kids
were better off than a lot of the other kids who were sleeping in
Port Authority and so forth. So, the issue is not just to attack
and to get these people who exploit the kids, which I'm all for,
the johns, all of them. I have no sympathy for them. But at the
same time, we must recognize that the real horror is that as a
society we are condemning thousands of kids to have to worry
about getting clean underwear and food and so forth.

CHAIRMAN WATKINS: Doctor Conway-Welch? Doctor Lilly?

DR. LILLY: I was startled by a statement you made,
Doctor Martin. Twenty-five percent of male juvenile prostitutes
live at home?

DR. MARTIN: Yes, of our clients. These are the kids
that I mention -- by the way, they very often up being homeless.
These are the kids I mentioned like the case of the boy who goes
down to 42nd Street and Greenwich Village to make contact. Very
often what happens is they start staying out late at night, they
start being truant, they start having problems with their
families and they will end up on the street.

 

I want to stress two other things about that figure
too. We do get a lot of kids who have not had sexual activity
yet. In our program, we encourage them in that choice and
support them in that choice. The point is that for most gay and
lesbian adolescents, their only way to meet anybody is on the
street. If you go on the street with the crack and all the
influence of the other street people and the adults who are out
there to exploit you, you are much more likely to get involved.

There are, as I say, at least 25 percent of kids who
sort of maintain a double life, but they become a decreased risk
for PINS petitions. They become an increased risk for truancy,
right down the line. You know, one of the points that I wanted
to make, because a part of the problem is that the problems of
street youth are so horrendous that we can begin to focus only on

200

 

 
 

 

those. I do want to make a point about the gay and lesbian
adolescent who is living at home, perhaps not involved in street
life, but just involved in the school hiding. Part of the
problem, for instance, with the AIDS education and risk reduction
programs that now exist in schools is they automatically assume
the heterosexuality of all the kids.

There is absolutely no attention paid to the gay and
lesbian adolescents who are part of that population and every
school has a percentage of gay and lesbian kids. Those kids get
put at high risk because they are kept ignorant. It may be a
different risk from the kid who has to sell his or her body to
survive, but they're still at risk because they're kept ignorant.

DR. LILLY: What about active discrimination? There
are, in fact, a few kids who come out as homosexuals.

DR. MARTIN: Yes. Well, part of what we do at our
agency is we serve an advocacy function. We often do challenge
various agencies at various schools and so forth for acts of
discrimination when we can. Two things about that.

One of the first cases we dealt with was a young 14
year old girl who did not recognize herself as a lesbian and may
not have been a lesbian, but she wrote a note to her physical
education teacher. The physical education teacher got panicked,
went to the principal, who called in the parents and said, "We
can't have a child like this is school. She'll corrupt all the
other children." They had no other placement for the young
woman and even though she had a very high IQ, she was put ina
school for the learning disabled.

Now, we wanted to get the parents to sue that school
and to sue that principal. They were more ashamed of the fact
that their daughter might be thought to be lesbian than the fact
of what she was going through. That's the kind of thing we
often face in the discrimination.

I think Doctor Kennedy can even mention about cases
they've faced of kids facing discrimination where they can't get
the kids to institute the lawsuits for a number of reasons.

DR. LILLY: A last question on there which may be a
matter of opinion or maybe you actually have specific
information on that. You talk about the lack of the sex
education and perhaps other types of education about
homosexuality in schools. If such education occurred, would that
influence the incidents of homosexuality?

DR. MARTIN: No, any more than the active promotion of
heterosexuality in the schools and, in fact, all levels of
society has never influenced the incidents of homosexuality or

201

 

 
 

 

heterosexuality. You don't become homosexual or heterosexual
because of influence. Nobody really knows why you do, but there
is no evidence that there are more homosexuals in a society that
is open as opposed to one that is restrictive like ours.

What you probably would get are fewer adolescents
getting married as a means to hide and therefore have less of a
problem, the so-called bisexual male who's running around on his
wife on the side, going and picking up these kids very often. In
other words, the openness would allow a certain amount of
reasonable choice on the part of young people as far as behavior
is concerned.

One other point I want to make, by the way. They
always point out that lesbians are the lowest risk group. We're
dealing an awful lot with young teenager lesbians who get
pregnant as a means to hide. A lot of their behavior is they
will go out and try to get pregnant, which often means multiple
partners and everything else. They're placing themselves at
risk. That's why we always include the young lesbians in all of
our AIDS and risk reduction education programs.

CHAIRMAN WATKINS: Ms. Gebbie?

MRS. GEBBIE: I think Doctor Hein has something to
say.

CHAIRMAN WATKINS: Oh, yes. Go ahead, Doctor Hein.

DR. HEIN: I wanted to come back, Admiral Watkins, to
your initial question because it had two parts and we only dealt
with one. The second part was what kind of epidemiologic
information ought we be collecting in the future or how should we
look at data? I would make two suggestions. When we're talking
about cases of AIDS in adolescents, then we have to enlarge the
scope. The CDC and lots of health departments talk about 13 to
19 year olds. That won't do for reported cases of AIDS. So, we
recommend that we do a minimum through age 21.

In terms of the sexually transmitted disease rates, we
should use the denominator, not how many young people there are
who are ten and 12 and 14, 1 and 18 and so forth, but the percent
at risk for that sexually transmitted disease. So, what percent
are sexually active at different ages? If we made those two
corrections, we would have in our just routine reporting through
the Centers for Disease Control and so forth, a much more
accurate reflection of what's going on for the sexually
transmitted diseases as well as for reported AIDS cases. When
and if we get to the point of looking at sero-prevalence of HIV,
then we can cut in anyway we want. We can look at the younger

202

 
 

adolescent versus the older. But for reported AIDS cases or
sexually transmitted diseases, we have to change the denominator
and the scope --

CHAIRMAN WATKINS: Would you take time, Doctor Hein, to
write that down in a way that you'd like to see come back at it
in the final report? I want to word it in a way that's going to
be understood by the CDC when they receive it. You're working
with them, you know what the situation is. Then give us phase
two also, the second part of your point and if we get to that
point, then this is the way you'd like to see it broken out. So,
you'd have kind of phase one and two, assuming we can get to the
point that phase two is achievable because of other things that
we're going to be recommending in our final report.

MRS. GEBBIE: I'm going to try and summarize something
I've made out of this testimony and then let you tell me where
I've gone wrong with it or how else to state it.

You've made some very specific suggestions. It seems
to me an overriding, general recommendation that could come out
of what you've said is that we ought to conceptualize
adolescents at risk of this infection as a special population the
same way we have addressed minority populations or other
subgroups. In the same way, we have started talking about some
of those. We ought to say where decisions are being made, a
person who is expert about adolescence ought always be involved
with the policymaking panel. Where research is being designed or
where funding is being planned, a person who is expert in
adolescence ought always be a part of that process. A sufficient
number of experts about adolescence ought to be developed that
there are enough of them to go around on all those panels I just
invented, and carry that sort of recommendation down through.

That might, in fact, as an overriding recommendation make sure we
got where you're trying to go as opposed to if we wrote down 22
things and then walked away we might have missed something that
wouldn't get picked up later. Does that seem to make sense?

DR. MARTIN: Yes, I think it makes sense. I think
there's one other thing that we all would agree on and I think
we've all stated. AIDS and AIDS risk reduction programs have to
be recognized not just as informational programs. If you find
shelter for a homeless youth, you've done as much for AIDS risk
reduction as if you trained them constantly in the use of
condoms, which we do and I'm all for. I'm not trying to negate
that. The recognition that basic medical care for these young
people, for the syphilis, for the gonorrhea, for the hepatitis B
and so forth that's in the population is, again, as much an AIDS
risk reduction.

Again, I think we would all agree that an important
part of this concept is the provision of basic services to this

203

 

 
 

gs are

7

 

population is an absolutely essential part of combatting the AIDS
epidemic.

DR. HEIN: I would underscore the importance of the way
you've pulled it together because unlike some of the other
subgroups that have been affected by the epidemic, adolescence
doesn't have a receptor site in many of the federal agencies. As
an example, the National Institutes of Health have a National
Institute on Aging. So, if you have an aging issue, you know
where to go. The problems of adolescents are scattered
throughout the NIH. There is not a study section to review
research proposals that's called the adolescent study section.
Because of the way the NIH is set up, their livers may be looked
at in one place, their lungs, their heart and their brain in four
different institutes. So, at least to have a representative on a
policy research service panel would certainly go a very long way.

MRS. GEBBIE: Let me then just double check something
else. It's my impression that people who are expert on
adolescents aren't always very easy to find. They lurk in
pediatric societies and in school nursing sections and a variety
of places. Are you collectively across the country sufficiently
well organized that we could call out some names of
organizations that would be resources to do that? Do we have
those somewhere in the materials we have at hand?

DR. HEIN: There are some and at least in my documents
some of them are mentioned. But specifically there is a Society
for Adolescent Medicine that brings together health
professionals. Not just physicians but largely physicians who
are involved in the care for adolescents. They were one of the
co-sponsors of the first invitational conference on AIDS and
adolescents that just happened in March. A very good resource
for you would be the proceedings of that conference. It had four
workshops, policy, testing, education prevention and programs.
Each of those workshops developed a background paper as well as a
set of recommendations. That will be published within the next
few months. They are meant to be models for other people around
the nation.

MRS. GEBBIE: Is that'material sufficiently well
developed that you could give us a source to get our hands on
that at this point since we have a very short time frame?

DR. HEIN: Yes. The coordinator is Jean Garrison from
the National Institute of Mental Health.

MRS. GEBBIE: Our staff then I think can follow up.

DR. HEIN: We have the attendees and who worked on
which things and the background papers are already available.
The recommendations are currently being worked on.

204

 
 

 

MRS. GEBBIE: Thank you very much.

DR. MARTIN: Could I just suggest too that the Child
Welfare League has just recently published policy guidelines for
treating HIV infected youngsters, including adolescents. The
Runaway and Homeless Youth League, which is a national
organization, has addressed some of these issues. There are
individual programs in various cities. The Lesbian/Gay
Community Center in Los Angeles, Doctor Deischer's program in
Seattle, SMILE in Washington, there are a number of various
programs that are addressing these issues.

DR. KENNEDY: The Runaway Network, Joan Busey.

MRS. GEBBIE: Yes, we've heard from her, I think,
several months ago. Thank you all very much.

CHAIRMAN WATKINS: Doctor Conway-Welch, do you have a
question?

DR. CONWAY-WELCH: Just a brief follow-up on Ms.
Gebbie's statement. The adolescent medicine is now a board
certified specialty, is it not?

DR. HEIN: No, it is not. It's meant to welcome any
professionals who wish to work with the age group rather than
have boarded subspecialty which would be rather exclusionary.

DR. CONWAY-WELCH: I see.

DR. HEIN: So, it includes largely pediatricians, but
internists, obstetrician/gynecologists, psychiatrists, a number
of the traditional branches of medicine.

DR. CONWAY-WELCH: Thank you.

CHAIRMAN WATKINS: Doctor Crenshaw, you had a follow-up
question?

DR. CRENSHAW: The thing that I was interesting in
pursuing with you, Doctor Kennedy, is you mentioned that you were
taking the initiative to have a testing program in the kids that
you treat and that you had to cancel that for lack of funding.
Not so much of the testing, if I understood you, but all of the
Support systems and issues that would be needed to be done to
follow up on that.

Have you applied for funding and been turned down? If
So, what were the obstacles? I imagine because you're dealing
with a very hard to reach population as you indicated in your

205

 

o at 4

 
 

 

testimony, that they're going to be very difficult to counsel and
that they're going to need some continuous supportive care in
addition to perhaps a home and a place to live.

What is the scope of the funding that would be
required? If you don't have that off the top of your head, let
me know later. But I'd like to know a way that we can facilitate
that because if I understood you correctly, and correct me if I'm
wrong, did you say that 42 percent of those you tested were
infected or was that a --

DR. KENNEDY: No, 40 percent of the at risk youth in
the clinic that we chose to test, 40 percent or 50 youth.

DR. CRENSHAW: That's a lot of kids.

DR. KENNEDY: It is. This is not -- as I said, I
think the floor for sero-prevalence is somewhere around seven
and a half percent all of street kids coming into programs like
ours, certainly in New York and probably in other cities.

We have a very good handle. We have a budget actually
for the AIDS program that we would like to put together. The
residential component of it, the round the clock, 24 hour day,
365 days a year nature of the program is what makes it a very
costly program, number one. But these are the basic services
that Doctor Martin keeps referring to. Really, you can't go
beyond that. The biggest problem we face day to day is, "Okay,
it's 5:00 and the clinic is closing. What do I do with these
boys and girls?"

DR. CRENSHAW: What can we do to help?

DR. KENNEDY: Well --

DR. CRENSHAW: What sort of recommendations could we
make?

DR. KENNEDY: As I say, start with residential, start
with comprehensive. A program the scale we're proposing, 26
beds, we happen to have the real estate, so we're only look at a
start-up cost of somewhere in the area of $650,000 or $700,000.

We have been turned down for grants that were related
to that by the New York State Department of Health. At the time
we were facing the problem, there weren't RFPs or specific
proposals where we could go for that type of program.

We have subsequently made formal proposals to large
foundations. Obviously, we all know that the Robert Wood

206

 

 

 
 

 

Johnson Foundation has been very active in this area. We have
applied to them. We've applied to others. We have secured a
very large donation from a private donor. I don't know if he
wishes to be public at this point, but at some point that will be
announced. We have just now some grant applications being
written for federal agencies, both in HHS and, if we can get past
this distinction, over in Juvenile Justice where they are
concerned about the fate of runaway and homeless street youth.

DR. CRENSHAW: And that, as I understand, can take up
to eight months or a year after the proposal is submitted, or
has that process been accelerated yet?

DR. KENNEDY: I would say eight months is probably what

DR. CRENSHAW: I mean I don't want to be impatient, but
it sounds to me like you need help tomorrow.

DR. KENNEDY: We do, but we're going ahead anyway.
Just the other day at a meeting I heard that the New York State
Office of Mental Health in some division is going to be looking
at setting up their own residential program for this population
which will -- I think that will start to happen over and over
again.

I didn't answer your question completely. Let me tell
you that we talk about contact with those caring responsible
adults. Those caring responsible adults often earn $30 to
$40,000 a year because they are highly trained social service
people. If you were going to staff a round-the-clock facility
like this, you're not going to be able to staff it with the
traditional child care people. You do need a higher level of
counselors and administrators. It almost takes on a medical
model. It involves a lot of medical personnel. They are more
costly than other levels of care givers. So, there are costs
built in that are not easy to deal with right away.

We're already moving forward on our program and our
project. I don't get into that area of looking for RFPs and
things of that sort.

CHAIRMAN WATKINS: Doctor Lilly, one last question?

DR. LILLY: Doctor Hein, I must say I'ma little
discouraged by all of this. I get the feeling that we may not
win this war. What can we do?

DR. HEIN: Yes. Well, I think what's fascinating,
Doctor Lilly, is the difference ‘even in a few months, from when I
testified in February to now. That's only a few months. But the
information that's coming in is more than worrisome, it's scary.

207

 

 
 

 

I do feel, however, that the next year or two may make
all the difference for adolescents. The homosexual adult
population has organized and it's been effective in reducing the
incidence of AIDS. That's clearly happened. The IV drug abusing
community has been getting a lot of attention and some steps to
remedy that situation were recommended by you and are being
taken.

This one, it's almost as if in the science fiction
movie "Back to the Future." We have an opportunity to do
something different before we have such a bad problen.

DR. LILLY: But you're talking about education now as--

DR. HEIN: No, I'm talking about the kinds of services
for the kids who are risk, like the military kids who are
infected.

DR. LILLY: It's not just street people who are risk,
is it?

DR. HEIN: Not so. Another group which we haven't
even mentioned this afternoon has been, for instance, the
hemophiliac male adolescent. They are sexually active. In fact,
fertility rates among hemophiliacs are higher than the national
average at the moment. So, we have another group of adolescents,
hemophiliac males.

What we need to do are to reach out to the high risk
and the infected adolescents right now and engage them in the
kind of care that will attract them and retain them over time.
That's where I think we have something we can do today that will
make such a difference in a couple years.

CHAIRMAN WATKINS: Doctor Hein, let me close out the
panel. We have to move along.

What is being done now in the area of research on
substance abuse other than IV drug abuse and its relation to the
spread of AIDS? We use the term judgment effects behavior,
influences the AIDS epidemic. We have no data on that. It's
very difficult to get that data. Is there work going on
aggressively to look at how we might get a handle on the degree
to which drug use in the country or substance abuse, including
alcohol abuse, affects the epidemic? It seems to me that that's
an area that we just almost throw up our hands at. The question
coming from your vantage point is do you see any need to address
that issue? You talked about it. We know it's there. The panel
recognizes that, but we don't know what we should recommend
except just to worry and hand-wring about it.

208

 

 
 

 

DR. HEIN: Those kinds of questions have already been
asked for the adult population, what's the relationship between
drug use and HIV infection.

CHAIRMAN WATKINS: Yes.

DR. HEIN: They are being asked among the kinds of
circles that we represent. But again, one of the things that
would drive being able to answer those questions is to have
funds. Again, the adolescents aren't separated out for funding
purposes. So, if you happen to be interested in adolescents, you
almost have to merge them with adults or kids or somewhere to be
able to answer the questions. So, if they were being asked with
targeted proposals so that people who deal with adolescents could
respond, you'd get some answers. There's a lot of interest in
it. There's also a fair amount now of multi-disciplinary --

CHAIRMAN WATKINS: But what would you recommend that we
Say in our report? You know, we have all of the cofactor
information surrounding this issue except we don't focus in on
that except in a very general context. It seems to me that if we
could focus on the adolescent substance abuse issue and its
relationship to the epidemic, other than IV drug abuse, or in
addition to IV drug abuse, it seems to me there might be a
message there that we could glean out of the data at some point
in time that helps get this nation aware of the incredible damage
being done by drug abuse in the country.

DR. HEIN: Okay. To help you, there have been a set of
recommendations developed by a panel of behavioral scientists and
adolescents medicine people to the NICHD just for last month.
They include both the biomedical as well as the behavioral
research arena. So perhaps I could forward those to you to
include for your deliberations.

CHAIRMAN WATKINS: We had some recommendations in that
regard in our interim report, but this may help harden up those
recommendations. We don't have to stick with those. We've
recognized that we may be able to enhance those recommendations
over time. So we might be able to modify our initial
recommendations in this very area and strengthen them. If you
could provide that to us.

Then the last question I have is, in all the work that
I have done in youth at risk -- let's get away from HIV epidemic
right now. I can't tell you how many conferences I've attended
in which those young people who have gone out of the mainstrean,
whether it's teen pregnancy, whether it's substance abuse,
whether it's teen crime, whatever it is, and come back into the
mainstream will tell you to a person that yes, it's important to
have the adult mentor instruction, but it's also equally if not
more important to have peer mentor, peer help.

209

 

 
 

 

It seems to me we're not taking advantage of the
tremendous spirit and capability of our young people to be part
of the solution instead of being the butt of criticism that
they're the problem. When are we going to start turning that
around? It seems to me that there's an opportunity in the youth
community service concept or other things where young people
help young people, particularly those that have wandered off the
main path but have come back. The graduates of Rich's Academy
come to mind, 600 primarily black kids, back in the mainstrean,
fully employed, have goals in life and have been there. The
stories they tell are incredible stories to their own peers.

Peer pressure, we found in the military, you must get
it on your side if you're going to win the battle. Adults
pontificating from above about what children must or must not do
has not been very useful. Obviously we have to do that too.
There has to be a bridge, but it seems to me we're not taking
advantage of that. How much work has been done in the school
systems themselves or to bring young people into this game of
dealing with adolescents?

DR. HEIN: I think young people --
CHAIRMAN WATKINS: In addition to the adults.

DR. HEIN: -- have been used in a number of ways
already and we'll throw out a couple of additional ways. They
have been used as focus groups to test educational materials.
They are now being used in the educational Materials themselves,
new videos include teenagers themselves bringing up these
issues, working them through and helping to solve then. They are
being used now in terms of teen hotlines as well as some peer
counseling models. But I think that what you're speaking to is
really a larger issue. .

CHAIRMAN WATKINS: It's larger.

DR. HEIN: Can we not convert the new crop of young
people into more compassionate adults? For that, it goes beyond
-- that means volunteer car washes and bake sales and volunteer
efforts to help persons with AIDS who are teenagers doing the
volunteering. So, our next crop of adults will form a different
society than the current crop of adults is.

So, I think your recommendation is wise, it has broad
implications, not only for the already infected, for the at
risk, but even for the low risk teenager to become a better
adult.

DR. MARTIN: Could I add to that very quickly? We in
our group are trying to use peer work. We're trying to develop it

210

 
 

 

even more. But again, as Doctor Lilly pointed out, a very small
percentage of young people, of gay young people at least, are on
the street. Three percent maybe is the total throughout the
nation that we guess. We get a very small percentage at our
agency.

But when you talk about peer programs and sharing and
so forth and you think of the gay or lesbian adolescent in a
high school who is afraid to share with anybody what are their
concerns, you really have a problem as far as involving them or
educating them. That's part of the point.

By the way, I don't think it applies to just gay and
lesbian adolescents either, especially a peer program. Any
programs that are developed on any level with adolescents must
address the issues that are important to those adolescents and
the particular groups that they belong to. That often is
difficult.

I just gave testimony at the Medical Issues in the
Year 2000 Conference. I gave the figures that are coming out on
teenage suicide, attempted teenage suicide among gay and lesbian
youth. In our population alone it's 28 percent. In Los Angeles
they're finding 22 percent. This goes along with many other
studies that show it from 20 to 25 percent. After it was
finished, I was told by government officials, "You're doing
wonderful work. This is very important, but there's no way we
can fund an agency that serves that population."

Now, that's for suicide, which in its own way can be
quite quicker than the HIV infection. We're seeing this coming
out in programs against HIV infection. Again, by the way, I'm
not saying it's just our population. I'm addressing that
because that's the area I'm expert in. It's true with all
teenage populations. There are social and political factors that
interfere with many of the possibilities that all of us have in
our mind that we could do. If anything, I think that's one of
the major things the Commission could do, make the recommendation
that those factors not influence the development of programs for
youth.

CHAIRMAN WATKINS: We're going to have to close out. I
appreciate very much your staying over a few extra minutes. Thank
you for the exchange with the Commission. It's been very
important to us and we've tasked you to do some additional things
and we very definitely need the information as quickly as we can
get it. This will close out our hearings as of tomorrow and
we're beginning to staff up our work.

We'll shift to the next panel now. This is Programs
for Hard to Reach Populations. It will be a panel of five
presenters. First, Doctor Larry Siegel, American Medical

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PO

Society, on Alcoholism and Other Drug Dependency and AIDS Task
Force; Nancy Block, Coordinator, Professional and Communication
Training Program from Gallaudet University National Academy,
College of Continuing Education. Along with her is Ms. Holly
Bell, Director of Student Health Services. We also have Jean
McGuire, Executive Director, AIDS Action Council, formerly of the
Association of Retarded Citizens of the United States.

In addition, we have from the Children's Better Health
Institute in Indianapolis, two presenters, Mr. Andrew Burnett and
Mr. Bob Silvers.

So, if you'll all come up and we'll start with
testimony initially from Doctor Larry Siegel.

DR. SIEGEL: Thank you, Admiral Watkins and ladies and
gentlemen of the Commission. It's a pleasure to have the
opportunity to address this Commission today as a representative
of the American Medical Society on Alcoholism and other drug
dependencies, which is the largest physician organization in the
world directly concerned with the medical care of chemically
dependent people, about 3500 physicians.

I'm glad that Admiral Watkins gave me the lead-in for
the discussion because it is my impression that we have not paid
a great deal of attention to the general problem of substance
abuse in general and how it relates to the AIDS epidemic.

I'm reminded a little about a story I recently read
about the great plagues of the 14th and 15th century, the
bubonic plague, when doctors frequently refused to care for
patients, as we find ourselves once again dealing with.
Physicians in those days were divided into physicians and
surgeons. The surgeons in those days were considered lesser than
physicians. What happened was that the surgeons were asked to go
into the rooms of the plague patients and then call out through
the windows the condition of the patient and what they looked
like and their color and their sex. Then the physicians, who
stayed away from the patients, would yell back the instructions
to the individuals in the rooms, the surgeons, so that they could
provide the care.

Sometimes, those of us who are front line AIDS
physicians, as I am, I'm an internist providing direct line care,
feel that we are up in the rooms looking to see what the problem
is, yelling out to the federal government and other agencies what
we think needs to be done in getting the instructions yelled
back to us without an appropriate assessment of what the real
problem is. One of the real problems very clearly is the
relationship of drugs and alcohol and AIDS.

 

! 212

 
 

 

 

Co ET

or

I want to focus a little on issues that relate to the
acquisition of the agent or agents that cause AIDS in the course
of infection, including full-blown acquired immunodeficiency
syndrome itself.

First, as is known by all of you, this infection is
very difficult to transmit. Exposure, at least single exposures
do not mean infection. There are very clearly defined
populations susceptibilities which in this country are gay men
and urban poor Hispanics and blacks. These population specific
susceptibilities are strong indications that simple exposure to
the punitive AIDS virus is not necessarily adequate to cause
infection. Therefore, it's reasonable to assume, as others have
testified, that co-factors are crucial in terms of acquisition
and are perhaps necessary. These include environmental, toxic
and drug related co-factors. A crucially important behavioral
co-factor is the alteration and disinhibition that occurs while
individuals are under the influence of alcohol and other mood
altering substances.

Doctor Ron Stull has made the point that behaviors
associated with acquisition of HIV infection are clearly more
prevalent when individuals are under the influence of mood
altering drugs. The use of drugs and alcohol is highest in those
populations which currently are most susceptible to HIV
infection. These behaviors, in association with imnuno-
suppressive effects of mood altering drugs may combine to allow
for infection to occur.

In addition, the course of infection, once acquired, is
variable. Individuals who continue to use drugs in New York City
have a much more rapidly fatal course, for example, than
individuals from other non-drug using populations.

We know that hemophiliacs who are HIV sero-positive,
among young people the progression rate is slower than it is with
adults. And we know that progression rate in full-blown AIDS may
be rapid, slow or not at all.

Once again, other factors appear key in determining the
course of HIV spectrum disease. It is now clearly documented,
popular media notwithstanding, that AIDS is not 100 percent
fatal. We know from statistics published by the CDC that between
five and eight percent of all the individuals diagnosed with AIDS
in 1981 are still alive. And we know from the New York Cohort
Study published in the New England Journal of Medicine in
November of 1987 that the probability of survival overall in 5800
people with AIDS is 15 percent and among gay men with Kaposi's
Sarcoma may be as high as 30 percent.

213

 

 
 

 

Why some individuals are able to survive for long
periods of time and others go on to a rapidly fatal course is an
important and intriguing enigma. It is critical that resources
be devoted immediately to a complete and thorough analysis of
long-term survivors and their characteristics. This data must
be rapidly evaluated in appropriate laboratory settings so that
we can ascertain what factors are important and extrapolate those
to larger populations. The clear implication is that factors
other than HIV infection along contribute to a fatal outcome in
this disease.

Co-factors are important. We know from animal and
laboratory studies that marijuana, alcohol and opiate narcotics
have direct immuno-suppressive effects on the CD-4 cell
compartment and other areas of the immune system. Logic points
to drug and alcohol use as co-factors in this disease. But it is
a travesty that in 1988 we do not know what the dose response
curve for alcohol is on the T=-4 cell compartment. We do not know
that if an individual has one or two drinks or gets drunk or has
a blood alcohol level of .4, whether those variations in dose
have a direct effect on the immune system relative to the
potential for acquisition of HIV infection or progression of
disease.

It is even less known about the effects of marijuana
and opiate narcotics in terms of dose response curves and
potential co-factors in terms of acquisition and progression.

Probably use and not just dependency are important. In
my experience, it is extremely rare to find an individual with
AIDS, to see a person with AIDS who has not had problematic use
of drugs and/or alcohol. We have today heard testimony about
kids and housing problems and urban poor and the issue of alcohol
and drugs is a thread that connects all of these various
subpopulations relative to risk, acquisition, progression and
death.

It is equally rare to find a long-term survivor, of
whom I know many, who are continuing to use drugs and alcohol.
This is yet another indication that while HIV is important today
in AIDS, other factors, environmental, drug related or otherwise
must be identified.

Finally, I would like to emphasize that the diseases of
alcoholism and other chemical dependencies are epidemic and are
directly contributing to the spread of AIDS. We've heard
testimony today about cocaine. Similar comments could be made
about alcohol, marijuana and other drugs of chemical dependency.
There's a very high prevalence of drug use in the HIV susceptible
populations.

214

 
 

 

There is an urgent need for chemical dependency
treatment programs designed by physicians and other health care
workers knowledgeable about both AIDS and substance abuse and
chemical dependency. The specific targeted programs must target
the HIV positive, chemically dependant population and not just
IV drug users. We need special programs that are designed for
chemically dependent people who are either at risk or have HIV
disease in order to give them the tools they need to recover from
both disease simultaneously.

I would parenthetically add that the tools that are
useful in this regard are frequently already within the
armamentarium of chemical dependency treatment professionals who
may need additional training, however, to deal with HIV disease.

Therefore, specialized training for chemical
dependency health care professionals in the areas of HIV testing,
confidentiality, sexuality, death and dying and, most of all,
living with AIDS is critical.

In summary, in reviewing the acquisition morbidity and
mortality of AIDS, variables other than simple HIV infection are
very important. These factors may be due to alterations in
either the internal or external environment in which the person
finds himself. Specific chemical dependency treatment programs
for HIV sero-positive individuals must be developed and
implemented as rapidly as possible.

Thank you for your time. I'll be happy to respond to
any thoughts or questions you may have.

I would like to just add an addendum that there are
several chemical dependency treatment programs in the United
States who are currently prospectively testing individuals for
HIV sero-positivity and refusing admission to treatment programs
for people who are HIV sero-positive. So, we need to make sure
that in terms of access to health care, that programs who receive
insurance monies and federal payments are not allowed to
discriminate against individuals in terms of access to care if
they happen to be sero-positive. Thank you very much.

CHAIRMAN WATKINS: Thank you, Doctor Siegel. Ms.
Block?

MS. BLOCK: Thank you. Good afternoon, Mr. Chairman
and members of the Commission.

We appreciate the opportunity to appear before the
Commission. It is a privilege to be involved in this crucial
process. We are pleased to be joined today by Ms. Susan
Newberger, who is the Program Development Specialist with the
National Academy at Gallaudet University.

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In all honesty, five minutes is a short time to cover
what you will recognize to be a complex area involving a
critical and often overlooked segment of our population. Just
how large is the hearing impaired community? This community
consists of persons with varying degrees of hearing loss. There
are over 21 million Americans with hearing loss significant to
impact on their lives. This number is expected to increase
dramatically with the aging of America.

Hearing impaired persons as a group constitute a large
minority and are best addressed apart from other minority and
disability groups because of their unique language and
communication needs. While other non-native English users have
already had materials modified into their native languages, sign
language has been overlooked.

MS. BELL: There is a higher than usual number of
persons deafened at birth due to the rubella epidemic of the
1960s. These persons are now of the age where they're exposed to
critical lifestyle issues related to HIV transmission. This
group has not had the benefit of the recently stepped up public
AIDS education efforts that their hearing peers have had.

In recent years, improvements have been made in the
delivery of specialized educational, social and rehabilitation
programs and services for hearing impaired persons. However,
there are still gaps between the perceived needs and deliverable
services. Compounding this concern is the fact that programs
serving hearing impaired persons, as well as those outside of the
deaf services field are not prepared to address the complex and
critical needs of hearing impaired persons affected by HIV
epidemic.

MS. BLOCK: The following highlight some of the HIV
related issues faced by hearing impaired persons and the
professionals who work with them in terms of access to resources,
educational and professional training efforts.

The proliferation of HIV related programs and
services, up until now, has been designed for hearing persons
such as those represented in the testimony this week before the
Commission. Many of these programs receive federal funds
governed by non-discrimination regulations pertaining to
handicapped persons. Yet they have demonstrated little or no
initiative in providing quality services to hearing impaired
persons.

Quality services begins with equal access to the full
range of services available with the aid of TDDs, which are
telecommunication devices for the deaf, interpreters, closed
captioned media resources, and other visual resources. Full

216

 
 

 

access also indicates hiring personnel with the communication
skills and the training to work directly with hearing impaired
persons and also advertising these services with the appropriate
assistance from leadership in the hearing impaired community.

MS. BELL: In spite of good intentions, hearing
impaired people have been limited to few services and this
minimal access provided by agencies all too often, unfortunately,
becomes the maximum. This should no longer continue to be the
case. With the volume of information disseminated to date, even
in different languages, the diverse communication and language
needs of hearing impaired persons continues to be overlooked.

The development of educational print and visual media resources
designed specifically for the needs of hearing impaired persons
should become a priority.

Development of specialized in-service training
opportunities addressing HIV related issues for professionals
needs to be two-fold. Professionals in the field of deafness
-require appropriate and up-to-date training on the HIV epidemic
and AIDS related personnel outside the deafness field require
orientation to working with hearing impaired persons.

Gallaudet University, through its campus-wide
committee on AIDS, is one of a handful of deafness related
efforts scattered across the country trying to address the impact
of the HIV epidemic. There is presently a lack of coordinated
effort to link AIDS related service personnel involved with
hearing impaired persons. There is also no formal deafness
related national organization with the staff and necessary funds
to coordinate and implement up-to-date information and resources
related to the HIV epidemic among hearing impaired persons.

MS. BLOCK: In response to these needs, and to
initiate further action, the National Academy of Gallaudet
University is sponsoring a national conference this coming June.
The conference program will address critical issues with regard
to deafness and AIDS related education/training efforts,
emotion/support, and ethical/legal issues.

An important outcome of this conference will be to
publish a national directory of professionals and organizations
involved in the provision of AIDS related services and
specialized print and media resources. Hopefully, this
conference will facilitate ongoing national strategies for
meeting the HIV related service needs of hearing impaired
persons.

Thank you for this opportunity to share with you some
of the barriers that the hearing impaired population faces in
this HIV epidemic. The solutions are not simple, but without
them hearing impaired people are literally dying for much needed

217

 

 
 

 

information, services and support. We look forward to future
contacts with the Commission on this critical segment of the U.S.
population.

CHAIRMAN WATKINS: Thank you, Ms. Block. Ms. Bell,
would you just let me know the date of the conference? Do you
have the dates in mind?

MS. BELL: June 10th through the 12th.

CHAIRMAN WATKINS: We're going to have our report due
to the President on the 24th of June. I think this is an
extremely important area. I don't recall what HHS has done in
this regard relative to the mailer, for example, but I don't
think it's been very much. I think it's so important that I'd
like to have a dialogue with you at Gallaudet to find out if we
can lead the conference. That's after our report from the
Chairman goes to the other Commissioners. We'll be in the final
debate of what should go into the White House. So, I'd like to
be able to say enough to lay the groundwork for assistance in the
future in this important area of dealing with the epidemic.

This is very valuable, Ms. Block's statement to us, but
we may want to talk to you a little bit more and lead the
problem, if you will, so that we're not also suspect in our lack
of sensitivity to the deaf. So, it's an important area. I bring
it up because I wanted to know those dates that you've given to
us now. It's going to have to work very closely with us. So,
we'll be contacting you and see if we can't work up some wording
for our final recommendations that puts some steam into this
engine. Ms. McGuire?

MS. MCGUIRE: Thank you. Admiral Watkins, other
Commissioners, I am Jean McGuire. I'm the new Executive Director
of the AIDS Action Council and I am here today in the stead of
the Association for Retarded Citizens of the United States
representing the concerns of a constituency on whose behalf I
worked for a very long period of time, people with mental
retardation and other developmental disabilities.

Given the rising rates of incidents of HIV infection
among this population, particularly among those who are or
previously have been institutionalized, given their history of
segregation within and from our social systems and given their
general lack of access to commonly available information, people
with mental retardation and other developmental disabilities are
an appropriate focus for the Commission and I thank you for this
opportunity today.

My discussion will look at three elements of concern
regarding the targeted needs of this particular population within
the context of the AIDS epidemic. First, their specialized

218

 
education needs; secondly, their particular anti-discrimination
concerns; and third, their need for appropriately trained health
care and other habilitation personnel.

People with mental retardation and other developmental
disabilities have limitation in their cognitive abilities such
that they require specialized educational instruction that takes
into account their particular needs. Generally, that means that
materials must be simple, direct and explicit. Instruction must
be multi-modal, frequently incorporating visual, auditory and
tactile or manipulative means of communicating. Materials and
instruction methodology must be sufficiently flexible to be able
to be altered to meet the learning needs of an individual.

Moreover, instruction generally needs to be repeated
within the various living environments, group homes, school
settings, work places, day activity centers, in order to achieve
the necessary conceptual generalization and assure appropriate
behavior modification.

As a result, from an AIDS policy perspective there are
two important issues regarding the AIDS prevention education
needs of people with mental retardation and other developmental
disabilities. First they must have access to appropriate
targeted and explicit materials. Second, they must have access
to educational opportunities in their various living
environments with adequately trained personnel.

Regarding the first requirement, I think it's
important to note how seriously disadvantaged this population
will be if certain congressional efforts to limit the development
of explicit educational materials continue.

Regarding the second, I would hope that the
Commission's overall prevention education recommendations would
explicitly note the federal government's responsibility to assure
that health and other direct care training opportunities which

‘are federally supported would assure access to such training by
individuals working with people with mental retardation and other
developmental disabilities.

You have already heard from a previous witness during a
prior hearing about the particular AIDS related discrimination
faced by people with mental retardation and other developmental
disabilities and by individuals who have mental illness or who
have been adjudicated to be incompetent.

These populations have a shared history of segregation
based on their disability, their primary disability which seems
to have exacerbated the discrimination they are now facing on the
basis of their HIV status. We have become familiar with
situations where individuals have been tested without any

219

 

 

 
 

 

informed consent, where their sero status has been broadly
disclosed, and where restrictive treatment has resulted,
including isolation within an institutionalized setting or
involuntary readmission to an institution from a community based
setting.

I strongly urge the Commission to incorporate within
its report recommendations that model testing, counseling,
disclosure and treatment policies be developed for these special
populations through appropriate activities under the jurisdiction
of the Office of Human Development Services, and in particular
under activities within the Administration on Developmental
Disabilities. I think one avenue for the development of such
model policy statements could be through the existing protection
and advocacy systems that are structured under OHDS.

I have already spoke to the need for appropriately
trained staff to address the AIDS prevention education concerns
of these special populations, but there are other staff training
issues which should also be reflected in the Commission's final
report. These concerns relate directly to the diminished
capacity of many of the individuals involved to participate in
their own self-determination.

Specifically, I am concerned that training be made
available relative to staff responsibility in implementing the
type of model policies mentioned previously. Because of the
great extent to which people with mental retardation and other
developmental disabilities rely on facility staff to assist in
meeting some of their most basic life needs, it is absolutely
imperative that the staff be adequately informed about the rights
issues involved and about their responsibility to assure the
least restrictive and most non-prejudicial treatment for each
individual.

Just as it is important to assure that there are
appropriate administrative and programmatic responses to the
impact of AIDS on these special populations, it is also necessary
to assure that legislative initiatives adequately anticipate the
needs of particular at risk groups and contain targeted language
to assure that their access to treatment and assurance of
protections are addressed. Congressional members should be
encouraged to review all AIDS legislative initiatives within a
context of all the potentially affected at risk populations to
preclude any limitations and access to treatment or any necessary
protections.

A good example of this was when we were looking at the
testing and counseling bill earlier this year where the
presumption was that the protections that were being structured
there were essentially going to be applying to the population
that is the largest population currently at risk which tends to

220

 

 
 

 

h

be white, gay men who are have full capacity. There was grave
concern about the applicability of those recommendations relative
to people with mental illness, people with mental retardation or
other people who had been adjudicated to be incompetent because
there were no assurances around guardian status and the aspects
of informed consent.

So, there are many different ways in which our policy
agendas are moving forward that don't fully anticipate the full
range of the populations that may be within the categories of
those most at risk that we would certainly want to recommend for
ongoing review.

Thank you for the opportunity to join you today and for
the good work you have done so far in providing a comprehensive
review and targeted analysis of the many dilemmas we face in
confronting the AIDS epidemic. I regret that I am joining
specifically this fray so late in your own work, but I would be
happy to be of any assistance that I could be during the course
of the final report. Thank you.

CHAIRMAN WATKINS: Thank you, Ms. McGuire. Mr.
Burnett?

MR. BURNETT: Thank you, Admiral Watkins and other
members of the Commission.

Admiral Watkins, with your permission, I'd like to
show a brief video kind of reviewing our program and giving you
some insight into more detail about what I will talk about after
the video.

CHAIRMAN WATKINS: Proceed with it.
MR. BURNETT: Thank you.
(Video Presentation.)

MR. BURNETT: I'11 continue on with my testimony here.
I'm very honored to appear before you today to testify on behalf
of the Children's Better Health Institute which is a non-profit
organization which supplies the funding needed to carry on this
most valuable AIDSmobile project as well as several other
projects including the mammobile, which is a mobile mammography
unit and the heartmobile which is a cholesterol education and
testing unit.

However, I am here today, as mentioned earlier, to
deal primarily with the issue of the AIDSmobile. The AIDSmobile
itself offers counseling to individuals on a one-on-one basis,
provides education, as you saw in the video tape there to groups
such as Teen Challenge, and offers free, confidential AIDS

221

 

 
 

antibody testing as well as counseling to those who feel they
might be at risk.

Briefly, a little bit about our program. Since its
inauguration, the focus of the AIDSmobile has been on attracting
people who have had a blood transfusion in the past ten years,
anyone contemplating pregnancy or marriage, or any individual
that feels they might be at risk. In concentrating on these
individuals, we're trying to get to the ones for reasons,
whether it be the stigma that was mentioned in the video or any
other reason, will not go out to the testing centers that are set
up by the states and counties, which has been one of the things
that we have come to find out while dealing with this project
that there's a lot of individuals out there who will not go to
these counseling sites and testing sites. They want to be
counseled, they want to be tested, but they just -- it's one of
those things they just put aside and say, "Well, we'll do it next
week," and next week never comes.

In order to participate in our program, after first
obtaining the pre-test counseling, participants on the
AIDSmobile are asked to fill out a confidential registration form
as well as a consent form which I've included in my testimony
which is entitled "Exhibit 1."

I might add, in order to be tested in our program, the
participant must first provide the name and address of his
physician to be notified in the event the test should come back
positive. After doing this, one of the phlebotomists would then
draw the blood from the patient. The blood is processed and the
serum sent to the medical laboratory in Indianapolis, Indiana.
This laboratory is approved by the CDC for interstate commerce
and certified under the Clinical Laboratories Improvement Act of
1967, which is known as CLIA. Doctor Gary Bollinger, who
oversees our tests in the laboratory is a board certified
pathologist.

After the test results come back, participants who
have tested negative are notified of their results with a letter.
They are again reminded as to exactly what a negative ELISA test
does and does not mean. In the event of a positive result,
following a repeat of the ELISA test by the medical laboratory
and a confirmatory Western Blot test which are all performed at
the Mayo Clinic in Rochester, Minnesota. The participant's
physician that was listed on the registration form is then
notified by society physician in person or by telephone. I
stress this is not done by mail.

Counseling and follow-up are provided by the
physician. Our counselors on this unit in order to try and clean
up the blood supply, explains in depth the window associated with
the AIDS virus, as well as encouraging everyone who leads a safe

222

 

 
 

 

lifestyle to pledge that they will donate blood to the Red Cross
or their local blood bank after waiting six months following a
negative AIDS antibody test.

Since launching this AIDSmobile program last year,
we've offered free, confidential, voluntary AIDS testing to 1403
individuals in the states of Indiana, Virginia, Tennessee,
Michigan, Pennsylvania, West Virginia and Washington, D.C., all
without a breach of confidentiality. Of the 1403 individuals
tested, 1371 have tested negative and 32 HIV antibody positive
individuals have been discovered and referred to their
physician. This calculates out to a positive rate of 2.28
percent.

In addition to the counseling and testing, we educate
individuals about AIDS through videos shown both inside as well
as outside the mobile unit. Educational videos include pre-
marriage counseling, safety of the blood supply, and AIDS
prevention. Having briefly gone over our program's actual
functioning status, I'd like to share with you some personal,
first-hand examples of how this volunteer testing program can
work and how widely accepted we have been while on the road.

During my tenure with the AIDSmobile program, the
highlight of my involvement would have to be, as you noticed in
the video, with the Teen Challenge Centers. Teen Challenge is a
church-based drug rehabilitation program. We were invited to
come counsel and test these former drug abusers at the various
centers located throughout the United States. One of these sites
that was of particular interest to me was the Teen Challenge Farm
located in Weersburg, Pennsylvania. For those who might not be
familiar with it, this farm is a center where the young men live
for a given period of time, where they work on correcting their
drug abuse problen.

After arriving up there early in the morning, I was
surprised to find that these young men literally flocked to the
AIDSmobile. They wanted to know what their antibody status was.
They had heard the fact that intravenous drug abuse would put
them in high risk. These young men were more than willing to
come down and be tested. Not only were they willing to be
tested, they viewed myself as being somewhat of an authority
figure and really wanted to reach out and get as much information
and really become friends on a one-on-one basis. It really
surprised me because I figured these young individuals would feel
somewhat intimidated. But that was not the case. These young
men -- like I say, I was so widely accepted, I could not really
believe it.

In addition, I wanted to bring up the fact that Doctor
Donald Burk has found that 17, 18 and 19 year olds who apply for
the military are already found to be infected with the AIDS

“* 223

 

 
 

 

virus. In Marion County, Indiana, for example, 1.27 per 1000
teenagers applying for the military were found to be infected.
Nationwide, for 17 year old males, the prevalence was .15 per
thousand. It jumped to .22 per thousand for 18 year olds and to
-66 per thousand for 19 year olds.

This increase might indicate that the virus is being
spread among teenagers who are unaware they are infected.
Looking at the broad picture of over 587,000 teenage males
tested, the national prevalence was .35 per 1000. In addition,
of over 84,000 females tested, the national prevalence was .26
per 1000. This testing shows the need for the voluntary testing
of our teenagers. We don't need to wait for the CDC college
anonymous testing program to act.

We need to locate these AIDS antibody positive
individuals and get them the counseling and medical attention
they deserve before it's too late. We know they're there. Even
if we only find one individual, it would be well worth it. We
think voluntary, confidential testing should be encouraged in all
the high schools and colleges so that the students won't be
unwittingly passing the virus to their sexual partners. We
believe public health officials should encourage the private
sector to join in the effort to identify AIDS infected
individuals so that the estimated one to one and a half million
individuals already infected with the AIDS virus can be targeted
for counseling and treatment.

The research and practical experience gained by the
Children's Better Health Institute in funding the mobile health
education and testing programs and health fair type testing
programs could be invaluable in encouraging other volunteer
organizations to make AIDS testing available to their
constituencies, congregations and/or memberships.

We have also found that it appears that double
standards exist regarding post-test counseling for those whose
results are negative for the HIV antibody. The army recruits who
test negative may be given instructions and admonitions on a
Single sheet of paper. The blood banks whose donors test
negative for AIDS need not be notified at all. Yeta
requirement for post-test counseling for all negative persons is
a deterrent to testing by those who would wish to do free,
confidential testing for blood transfusion recipients, young
women wishing to become pregnant or those who feel they might be
at risk.

To cite an example, last summer we were in Iowa
expecting to do free testing for blood transfusion recipients at
the Iowa State Fair. But our lawyers in Washington, D.C. called
to notify us that there was a new state law in Iowa that required
anyone doing AIDS tests to do post-test counseling for all,

224

 
 

 

including those who would test negative. The lawyers advised us
to bring the mobile unit back without doing any further tests in
Iowa.

To repeat our policy, our van counselors require the
name and address of a physician who will notified in the event a
participant tests positive on the repeat ELISA and confirmatory
Western Blot. We do not, however, believe it is necessary to
burden the physician or the patient with an office call if the
patient is negative and the only risky lifestyle was a previous
blood transfusion.

An example is a seven year old boy who had been
transfused two years later and an 80 year old widow transfused
for a hip replacement. Who would the van need to return to Iowa
to personally counsel these people about changing their lifestyle
as a prerequisite for testing them? They need to be tested, but
because of the restrictive regulations in some states, they don't
get tested. Laws that discourage testing of the low risk
population should be superceded by some federal legislation that
would encourage the private sector to work alongside government
in an effort to identify as many of the estimated million plus
infected persons as possible.

Recall Mrs. Dorothy Polokov who testified before this
Commission that she and her husband were given information about
AIDS testing at a health fair. Had she and her husband been
negative after his blood transfusion several years earlier,
neither would have needed post-test counseling about changing
their lifestyle. Yet the provision of post-test counseling in
person for all who are given the AIDS test makes the test
prohibitively expensive or even illegal for mobile units to
operate.

The senior citizens at the Ohio State Fair were
deprived from knowing if they had acquired the AIDS virus ina
previous surgery because of this obstacle.

We are preventing the tragic spread of AIDS. Many
volunteer organizations such as the Indiana Volunteer Firemens
Association, to which I belong, would want to help if they could
be encouraged to do so. When we tested the men at testing sites
in their fire stations, for example the fire station in
Plainfield, Indiana, they were extremely interested. After
talking with some of the men, they even suggested the idea that
we bring the unit out there as a community effort. These
individuals being emergency medical technicians in dealing with
the public are constantly being bombarded with questions
regarding the AIDS epidemic. They are --

CHAIRMAN WATKINS: Excuse me, Mr. Burnett, could you
wrap it up because we have to get to questioning. Doctor Siegel

225

 

 
 

 

has to leave in ten minutes. So if you could summarize, please.
We'll take your whole testimony for the record.

MR. BURNETT: Okay. Well, briefly, like I say in
summary, we would just like to see that the obstacles that are in
the way of voluntary testing, especially through mobile units
such as ours, be overcome so that we can get out to the public
and reach that sector of the public who will not, for various
reasons, go to the public testing sites.

CHAIRMAN WATKINS: Thank you, Mr. Burnett. Doctor
Siegel, we know you have to leave shortly. I'd like to focus on
questions for Doctor Siegel now. Doctor Conway-Welch?

DR. CONWAY-WELCH: In your work on co-factors, you
note that you're in private practice in Key West and treat a
variety of individuals with AIDS and with various chemical
dependencies. Do you have a varying age group in your patient
population and have you noticed indications of different
interplays of co-factors or different focus of co-factors in
different age groups?

DR. SIEGEL: We have a wide range of people, all the
way from late teens until into their 60s. One patient I know is
in his 70s. Most of our patients are gay men. We are beginning
to see the early introduction of HIV sero-positivity
symptomatically in the heterosexual population in our part of the
state. In terms of specific co-factors relating to different
populations, I cannot tell you that there are any. What I can
tell you is that across all age groups and all risk behaviors
that we have seen, there has been a very, very high use of mood
altering substances at one time or another, either in connection
with, coincident with that time of acquisition or relative to the
progression.

DR. CONWAY-WELCH: Thank you.
DR. SIEGEL: Thank you.
CHAIRMAN WATKINS: Doctor Lilly?

DR. LILLY: I'd just like to check out something.
When we come across an individual who is an asymptomatic HIV
positive individual and we're asked, "What should we do about
that?" the advice that frequently comes up is, "Okay, get lots of
rest. Eat properly, eat nutritiously, stop using any kind of
drugs, marijuana, cocaine, whatever, don't smoke, get a good bit
of exercise." Having said that, there's not an awful lot else
more to say. All that sounds extremely reasonable to me. Does
any of that really matter? Is there any evidence for it?

226

 
 

 

DR. SIEGEL: Well, I think until we devote significant
resources to the question of what the factors are the impact on
HIV acquisition and progression rather than devoting enormous
resources to testing which doesn't treat or cure or have
anything whatsoever to do with acquisition or progression, we
will not have the answer to that question.

CHAIRMAN WATKINS: Ms. Gebbie?

MRS. GEBBIE: Doctor Siegel, have you read the
Commission's interim report, the section in there on drug
related issues?

DR. SIEGEL: Yes, I have, Ms. Gebbie.

MRS. GEBBIE: My question then is, are there
recommendations either more specific than what were in there or
different than what were in there or something that you think we
ought to add into our final report or are you simply
underscoring that we ought to get about the business of being
concerned there?

DR. SIEGEL: Both. I think as Admiral Watkins has
pointed out several times today, we need to generically be
concerned about the problem of alcohol and drugs. I think we
specifically need to use the tools that we currently have
available to intervene directly in individuals who are at risk
for HIV infection which is the substance abuse using population,
IV drug users, excessive alcohol use, marijuana use, whatever.

We need to intervene directly and get those people
into substance abuse treatment programs and we need to make
available for the very first time in this country somewhere a
model treatment program for chemical dependency designed for HIV
sero-positive individuals. There is not such a program. Many
chemical dependency programs that we currently have in place are
ill-equipped at the present time to deal with HIV sero-positivity
for a variety of reasons, medical, social and otherwise. So, I
think we need to target that population, develop a model program,
a chemical dependency treatment program for HIV sero-positive
people and to put that in place and then Xerox it, assume its
successful in getting people off drugs and if we can then
demonstrate that being off drugs prevents progression, which I

?
4

think it will. If we are able to do that, then I think we need
to mimic that model treatment program elsewhere in the United
States. That's what I specifically think we need to do in
addition to the interim recommendations.

MRS. GEBBIE: Thank you.

227

 

 
 

 

CHAIRMAN WATKINS: Doctor Primm?

DR. PRIMM: What is your impression, Doctor Siegel, of
the difference -- I have an impression but I want to know yours -
- the difference between an HIV infected person who happens to be
substance abuse dependent, whether alcohol or other substance
abuse dependent, than someone who is not HIV positive?

In my treatment program, about 60 percent of my total
population are HIV antibody positive persons. The majority of
those persons are on chemotherapy of one kind or another for
their opioid addiction. So, what difference do you find among
your patients that are HIV positive?

DR. SIEGEL: You mean chemically dependent people who
are HIV positive, what's the difference between those and --

DR. PRIMM: Chemically dependent people who are in
treatment that are HIV positive that would merit a special
treatment program for that segment of the population.

DR. SIEGEL: Well, I think that the issues having to do
with relapse prevention in HIV sero-positive people, the whole
issue of their HIV sero-positivity is an issue that needs to be
dealt with up front in chemical dependency treatment. They must
have specific counseling, time devoted to that, group therapy
time devoted to that, special educational efforts devoted to
that.

And as you well know, the need in chemical dependency
treatment programs is to repeat information over and over and
over again. I would parenthetically say that I have long felt
that the best designers of chemical dependency treatment programs
are special education teachers who know how to teach people
repetitively things that they can't hear the first time. I think
that the same concept applies. We need special talents, special
skills and special emphasis. The reason I think that is because
most chemical dependency treatment counselors, doctors, nurses do
not have special medical skills in the area of all of the
problems connected with HIV sero-positivity and we do not have
time --

DR. PRIMM: Doctor Siegel, let me stop you right
there. What are the problems that you see related to HIV sero-
positivity? That's the point I want to make because you talk
about the problems but I haven't heard you cite -- what are the
problems related to that?

DR. SIEGEL: Well, I think sexuality, sexual
counseling, how to use the same kind of information that is being
taught in HIV counseling sessions in HIV counseling centers in my

228

 

 
 

 

office are the kinds of things that need to be introduced in
chemical dependency treatment programs. I don't think that most
chemical dependency treatment professionals are yet trained to do
that. Death and dying issues, all of these kinds of things need
to be dealt with in chemical dependency treatment. They are not
being.

We don't have time to go out and develop the training
programs for our chemical dependency treatment professionals all
over the country in time to impact on this epidemic. I think we
need to do something now to impact on the epidemic relative to
the chemical dependency issue. It would be nice if we could go
out into all the existing chemical dependency treatment programs,
train everybody how to deal with HIV spectrum disease and
implement it and put it in place. I just don't think that we're
going to be able to do that.

DR. PRIMM: I think that that would be a lot easier to
do than to start numerous programs for about 50 percent of the
. intravenous drug using population in the Northeast who would
qualify for those programs. I think you would be better off
training the people who are working in drug treatment programs
how to handle HIV infected persons, rather than to set up HIV
infected persons substance abuse programs that are specific for
that patient population.

DR. SIEGEL: I think the argument is the same about
whether you introduce the AIDS patient into the general medical
surgical service of a hospital as opposed to having an AIDS unit.
It's very similar. If you have the time and you have the
resources to develop your entire staff in dealing with this
disease, I think that's a great idea. I don't think we have the
time and resources to do that. I think we need to target very
specifically the populations that we need to be concerned about
and deal with them in special units. If we can then extrapolate
that to the larger chemical dependency treatment community, let's
go for it.

DR. PRIMM: Wouldn't that open the door to isolation
and possibly quarantine of those individuals in terms of
separating them out of that population?

DR. SIEGEL: I think that's a very valid concern.
Again, I think that we do not have the luxury of time to overly
concern ourselves when we're trying to deal with an epidemic
situation. I think we need to do something now about the problem
of chemical dependency in HIV sero-positive people. I don't
think we've got two or three or four years of time to do that. I
think particularly in the adolescents population, we need to do
it now.

229

oS

 

 
 

 

DR. PRIMM: Let me be a bit more specific, Doctor.
How long do you think it would take you to train a boarded
internist or boarded obstetrician/gynecologist or pediatrician
how to handle an HIV sero-antibody positive person?

DR. SIEGEL: Well, we've been trying to do that now
since 1981 with very limited success, I must say. So, I don't
know.

DR. PRIMM: Where is this, Doctor, in Key West?
DR. SIEGEL: All over the United States.

DR. PRIMM: Well, we are -- :

DR. SIEGEL: Are you successful with all of the --

DR. PRIMM: Absolutely. Absolutely and that's why I
surface it for you.

DR. SIEGEL: There are about 30 doctors in New York
City providing 90 percent of the AIDS care in New York City. So
I don't know where all these doctors are who are well trained.

DR. PRIMM: You're talking about two different things.
If you're talking about physicians that are providing care for a
full-blown AIDS patient, that's something else, with HIV disease.
I'm talking about somebody who is HIV antibody positive, which is
a different kind of a ballgame, than those who have an
opportunistic infection. So, let's just talk in the same
ballpark.

DR. SIEGEL: Okay.

DR. PRIMM: So, if we're talking that ballpark and
that's what you said initially, then how long would it take you
to train a physician who is competent no matter what specialty to
treat a person who happens to be antibody positive for the human
immunodeficiency virus?

DR. SIEGEL: Not very long if I can attract that
person's attention long enough to sit and listen and do what
needs to be done to learn about the disease. I agree with you.

DR. PRIMM: Okay.

DR. SIEGEL: I just don't think that we have people
paying a whole lot of attention in those groups.

DR. PRIMM: That's the point I wanted to make. I
think you're absolutely correct, Doctor, when you talk about
full-blown HIV disease or opportunistic infections. Then again

230

 
 

Thank you very much.
DR. SIEGEL: Thank you.
DR. PRIMM: I wanted to ask Ms. Block --

CHAIRMAN WATKINS: Could you hold off a minute, Doctor
Primm, because Doctor Siegel has to go. Let me ask hima
question and then we'll go on to the rest of the questions.

Doctor Siegel, in this New York Times article on the 5th of
May that talked about the recent studies conducted by a Doctor
Bagazra, the microbiologist/immunologist at the University of
Medicine and Dentistry in New Jersey did some in vitro tests that
pointed out -- and this has not been totally validated by many of
his colleagues, but pointed out that drinking may make people
more susceptible to infection and, in addition, may speed the
onset of the disease that affects people and the in vitro tests
were doing something like 25 to 250 times the situation with an
alcohol free specimen.

Do you have any further knowledge about that? Is this
generally being, at this point in time, favorably received as a
significant factor in watching the stage of the disease and see
what happens under certain circumstances?

DR. SIEGEL: That was an article -- I've read the article.
I know no more about it than you do, actually. That was an
article on the UPI wire and I made specific attempts through UPI,
through the medical school and a variety of other sources to
reach the doctor to talk to him about the.data and I haven't been
able to do that.

CHAIRMAN WATKINS: They say he presented his findings at the
annual meeting of the Federation of American Societies of
Experimental Biology. I don't know what that is.

DR. SIEGEL: Well, that's an organization of physicians. I
know the organization. I haven't been able to track it down yet
to talk to him specifically about it. There are anecdotes of
experimental evidence that would support that, but I'm very
interested in the same issue and I haven't been able to speak
with him directly about that.

CHAIRMAN WATKINS: Well, I think getting back to Doctor
Lilly's point, we've been searching for perhaps elements of new
hope for particularly those with HIV asymptomatic conditions,
that they have some new outlook towards life that gives them a
better expectation of longevity for a variety of reasons. Doctor
Lilly mentioned the classic issues that should effect all
Americans, but there may be others. We were exposed the other
day to some rather unusual situations that could

231

 
 

 

the other day to some rather unusual situations that could
generate opportunistic diseases for those who are HIV positive,
asymptomatic individuals, that they should avoid.

If this is true, it's another indication of some new
hope for those who have it, recognizing that if they're alcohol
dependent it's a problem for it, but nevertheless at least it's
an incentive to stay off those things that would speed the
disease.

So, we're trying to generate enthusiasm for those
either health practices or those situations that HIV asymptomatic
individuals should avoid and build a menu of those, either
through research work or others to begin to send signals out to
others that they ought to know their antibody status so that they
can better take advantage of the advice from doctors such as
yourself that would say, "These are the kinds of things you
really should know about." So, we know that that right now is
not a very well flushed out area. You mentioned something
earlier about pushing a little harder on perhaps research in this
area that would give you the answers to some of these things. So
I assume you want us to do that. You're recommending --

DR. SIEGEL: Very much so. I can cite one anecdote.
Doctor Rob Roy McGregor, who is Chief of the Department of
Infectious Diseases at the University of Pennsylvania is probably
the premier alcohol researcher in the world relative to white
cells in the immune system, applied for a grant to study the
effect of alcohol on the T-4 cell compartment, both in terms of
numbers and function. That grant was denied, unfunded. And this
is information that we simply must have in order to advise people
on what factors are important truly, relative to drug use and
alcohol, that we must have in order to advise them on
acquisition, progression, staying healthy after they're HIV
infected and so forth.

CHAIRMAN WATKINS: Do you have a copy of that proposal
that you could provide us?

DR. SIEGEL: I'11 be happy to get one.

CHAIRMAN WATKINS: The content of that proposal may be
useful in wording our recommendation. So, if you could get that
to us right away, we'd appreciate it.

DR. SIEGEL: Doctor McGregor does have an article in:
the book that has been provided to you that I sent up ahead.

CHAIRMAN WATKINS: Does that adequately cover the
point you just raised or should we --

232

 

 

 
 

 

CHAIRMAN WATKINS: We thank you, Doctor Siegel.
DR. SIEGEL: Thank you.

CHAIRMAN WATKINS: We know you have to leave and we'll
continue now with the questioning of the other panelists.

I'll go back to Doctor Conway-Welch.

DR. SIEGEL: I appreciate very much the opportunity to
be here. Thank you.

CHAIRMAN WATKINS: Thank you.

Wait. Before we start the other questioning, I
probably misunderstood. I did not expect Mr. Silvers to have a
statement, but I understand he may. I also want to thank Mr.
Silvers for the many kindnesses he extended to us while we were
in Indianapolis.

So, Mr. Silvers, if you have a statement, we'll
proceed with that now and then get on with the questioning.

MR. SILVERS: Yes. You're entirely welcome, Admiral.

Admiral Watkins and distinguished members of the
Commission, my name is Robert Silvers, Administrator of The
Saturday Evening Post Society's Health, Education and Testing
Programs. I can tell you that I have encountered numerous
obstacles along the way regarding the AIDSmobile, particularly
with various state laws and regulations regarding AIDS testing.

Our organization spent thousands of dollars in legal
fees to have every state government checked to make sure we
could do testing should we be invited to that state by some
organization. A brief example of these obstacles occurred after
we had been invited to bring the AIDSmobile to Memphis, Tennessee
to participate at a rally at Ridgefield High School. The rally
organizers had publicized the AIDSmobile and of course local
interest was high. A state health official learned of the plans
to offer free AIDS testing at the rally and called the organizers
of the rally to advise that we could not come because Tennessee
state law states that a physician licensed in the state must be
present when blood was being drawn. Reciprocity would not be
granted to an Indiana physician.

Not to be discouraged, we found a Memphis board
certified surgeon, Doctor William F. Andrews, to supervise the
blood drawing. His generous volunteer efforts allowed the
society to offer the free, voluntary, confidential test to many
grateful participants who waited in near 100 degree temperatures

233

 

 
 

 

society to offer the free, voluntary, confidential test to many
grateful participants who waited in near 100 degree temperatures
and we learned a lot from the doctor.

He stated that he was willing to volunteer on our
behalf and oversee the AIDSmobile project in Memphis because he
felt that every opportunity to know more about this condition is
essential so that steps may be taken to prevent people from
becoming infected.

He went on to say, and I quote from his statement, "It
is appalling to me that there are people in our country who are
doing everything in their power to stop discovering efforts of
those who make a sensible and courageous attempt to prevent the
unbelievable potential for the spread of this condition to the
people of our country." Then continuing his quote, "I believe
that every available medical resource should be mobilized and
that potential carriers or victims should be studied so that the
spread can be halted."

He goes on to say, "If we let this go unheeded, we may
well see the results of millions of people dying with no hope of
medical help. I further believe that we, the people of America,
should demand of our leaders in government that all legislators
who would hide the truth of the seriousness of this problem be
stricken from their consideration and that every effort be made
to warn this nation of the seriousness of the problem we face in
AIDS."

The Memphis on-site proved to be very worthwhile.
Little did we know that three of the persons who came through
that long line that day for counseling and testing would come
back positive. A total of 248 persons participated in the
screening. We had feared the appearance of the press might
disperse the crowd, but the crowd didn't care. The networks
interviewed and no one ducked the cameras. The line had formed
as soon as the AIDSmobile arrived on the scene. Young and old,
black and white, gay and straight, they stood there defying all
the propaganda and misinformation we had heard about the need for
privacy at the testing sites.

Another quick example of the obstacles we face was
when our AIDSmobile was invited to counsel and test the young
people in the drug rehabilitation unit at the Teen Challenge
Program in Buffalo, New York. The plans were cancelled when we
could not get permission to bring the AIDSmobile into the state
of New York. The state of New York made it clear to me that no
one is allowed to come into the state and offer AIDS testing. I
was told in no uncertain terms that there four free testing sites
in the state at that time that were available for testing and
that that was ample.

234

 

 

 
 

 

organizations such as Kiwanis, Lions Club, Optimists, Jaycees,
American Legion Auxiliary, CYO, Young Life and others that could
mobilize to encourage easily accessible free, confidential
testing sites for all those who wish to know. We believe that
testing ought to be made available also in high schools.

We recommend that due to the emergency, no physician
charge more than $10.00 for his part in the testing and that
federal or state money be used for contracts made with
commercial laboratories to test the civilian population who want
to be tested.

Damen Laboratories has successfully run four million
tests for the Department of Defense at a cost of $4.00 each.
This cost includes the repeated ELISA test and a confirmatory
Western Blot test. At this time we are told that Damen
Laboratories runs 8,000 tests each night. Running additional
tests would be cost effective for them, we are told.

Doctors' time could be used for counseling and
treating the AIDS positive individuals if easily accessible
shopping mall testing sites could be set up and paramedics,
phlebotomists and so forth could be efficiently used to screen
our large population who want to be tested voluntarily,
confidentially, free and at no risk of being informed of a false
positive.

To enable us to target the positive individuals for
counseling, it should be possible to assure the person being
tested that no physician or cost need be incurred except in the
rare event he or she was confirmed to be carrying the AIDS virus.
Then and then only would this person create an expense in
addition to the $4.00 charged by Damen Laboratories or any other
commercial laboratory that has been thoroughly checked out for
accuracy, as has Damen.

During the days when TB was a threat to the public,
many chest x-ray vans toured the countryside to encourage people
to have their lungs checked for TB. During the AIDS epidemic, we
seem to do just the opposite. We spend a great deal of our
resources teaching people akout fear of discrimination and
giving them reasons why they should bear the burden of their
infection alone, or worse, not know at all and continue to infect
those they love.

At our AIDSmobile counseling and testing sites, survey
forms are passed out to the visitors and The Saturday Evening
Post surveys show that 91 percent of the people want routine
testing of hospital patients, for example, and that's noted in
Exhibit A.

/ 235

 
 

 

The Hudson Institute Survey has shown that 70 percent
of the American people are willing to take the test voluntarily
today. They also are willing to pay more for their health
insurance to cover the cost of AIDS patients. But they expect
their leaders to take preventive measures.

We believe the leaders of the country should pay close
attention to the opinions and attitudes of the public. It is
encouraging to find that a large percentage of our citizenry are
quite willing to be tested and state that they believe all
hospitals should routinely check for the AIDS virus. They also
believe that testing before marriage licenses are issued should
be routine. Surveys asking the public how they would like to pay
for the AIDS tragedy should not be ignored.

We believe people can handle the AIDS crisis as long as
they feel they are being told the truth. The public may be
getting frustrated because some traditional preventive public
health measures are being waived, contrary to the wishes of the
majority of our people. We must listen. Now, in closing, I just
have seven official recommendations, if I may proceed with that.
Number one, if 70 of people in America would agree to be tested
voluntarily, we should test all those who want it, free,
confidentially and on demand with counseling for all positives
and only when necessary for those who test negative.

Number two, encourage private sector voluntary groups
to assist the government in sponsoring and performing testing and
counseling initiatives.

Number three, recommend that all persons who have had
blood transfusions since 1977 be tested free of charge and with
minimum inconvenience. Suggest post-test counseling for
negatives only if the patients request it.

Number four, doctors should be asked to include in
their informed consent forms complete information about methods
available whereby patients own blood can be used.

Number five, physicians who order blood transfusions
should be required to follow up with AIDS tests when a patient
returns for post-operative checkups.

Number six, encourage the FDA to proceed with
deliberate haste to approve a urine test that will enable parents
who suspect a drug problem in their minor children to monitor
their urine just as they might monitor a juvenile diabetic's
blood sugar level.

Finally, seven, we encourage President Reagan to go on
national TV to let the public know the importance of having a

236

 
 

 

 

voluntary AIDS test if there's any possible chance that they
could be spreading the virus unknowingly. He could communicate
the urgency of knowing and making a patriotic appeal to a large
majority of persons who are willing to be tested voluntarily.

Thank you very much.

CHAIRMAN WATKINS: Thank you. Ms. McGuire has to
leave. She is in a very important area that we haven't heard
from before and I would like to ask any of the Commissioners for
follow-up questioning we may have for her. Ms. McGuire, we'll
be talking to you again. We do intend to address the issues that
you raised. I don't want to cut you short, but I know you do
have to leave. So, any questions from the Commissioners?

DR. CONWAY-WELCH: I wondered if there were a core
curriculum or if the professional organization is making some
suggestions relative to the issue of AIDS content in special
education curricula or whatever vehicle that would be in?

MS. MCGUIRE: There are a couple of curricula that
have already emerged, one from the Youth/Adult Institute up in
New York. I don't think that there would be an explicit
recommendation for a particular curriculum, because of the
individualized nature. I think the thing you've heard repeatedly
through the different populations is that the need has to be
there and the development of materials, and the methodology has
to be such that it can be flexible to move around the
difficulties that emerge. There's certainly plenty of basic
material in terms of sexuality and the developmentally disabled
that could be piggy-backed upon. But, we do see as problematic
efforts to restrict educational development related to the virus
that would impact on this population in a slightly different way
than on the other populations that are involved.

DR. CONWAY-WELCH: Am I making a correct assumption in
that the issue of explicit content is a greater concern to you
because of -- in terms of how to treat it sensitively, but yet to
have it be clear enough?

MS. MCGUIRE: Right.
DR. CONWAY-WELCH: And that that is more of a concern
to your particular population than perhaps even to the

population at large, that tasteful explicitness, if you will, as
an issue.

MS. McGUIRE: Absolutely, and it's a dilemma that we
faced in developing other material, so we know the rigors of
going over those hurdles in the past.

DR. CONWAY-WELCH: Thank you.

237

 

 
 

CHAIRMAN WATKINS: Ms. Gebbie?

MRS. GEBBIE: My concern is that while there are
materials, general sexuality materials and others adapted for the
population about which you're concerned, is it widely utilized so
the curriculum is institutionalized in any place where
disadvantaged handicapped persons, retardation or
developmentally disabled person, is getting educated? So that,
if we got an AIDS package it could be an add-on?

MS. McGUIRE: Right.

MRS. GEBBIE: Or, do we also have the problem of
needing to institutionalize the basic health education
curriculum into which this should go?

MS. McGUIRE: I think there's certainly been a lot of
movement, particularly over the last ten years, in terms of core
curriculum that are available in a variety of different settings
relative to these populations. But, you are right. There's been
a hesitancy in general to deal with sexuality in a direct and
helpful manner with this population, which is why although I
focused on acquisition in the institutional environment, in fact
most of the people with developmental disabilities are not in
institutions and their cognitive disabilities are such that we
need to be extremely concerned about the sexual activities that
they are engaging in in an uninformed manner.

So, to some extent we do not have the kind of core
that we would like to, to be able to add on directly to it. But,
I think there are elements of it out there and maybe the urgency
of this crisis will build to better utilization of both those
materials that are in there and the pieces we could develop in
terms of an add-on.

I think there are resources, too, within the
Association for Retarded Citizens, the American Association on
Mental Deficiency, and a number of other groups, to tap into
state of the art pieces, as well as the Youth/Adult Institute.

MRS. GEBBIE: And that network, then, could also be
mobilized to get the AIDS piece incorporated?

MS. MCGUIRE: Right, but you are targeting what has
been a community-based hesitancy around moving forward with that
activity.

MRS. GEBBIE: Thank you.

CHAIRMAN WATKINS: Thank you very much, Ms. McGuire.

238

 

 
 

 

MS. McGUIRE: Thank you too.

CHAIRMAN WATKINS: We want to stay in touch with you
now, because we definitely want an important section to be
included in our final report.

MS. McGUIRE: Absolutely.
CHAIRMAN WATKINS: So, we'll follow-up with you.
MS. McGUIRE: Thank you very much.

CHAIRMAN WATKINS: I'd like to go back to questioning.
I apologize, Ms. Block. We had a witness, a couple of witnesses
come on this panel that added to the time, and I don't want in
any way to diminish the time we devote to your important area.
So, I'd like to go back now to Doctor Conway-Welch, and we'll
continue with the questioning.

MS. BLOCK: Before we begin, I would also like to
point out an issue with respect to the interpreters. I realize
it's an unexpected situation, but this does happen, that there
are sometimes difficulties, unexpected difficulties, and this
also points to a problem of concern that occurs all too
frequently out there in the community. It happens, and it
happens very often.

Our interpreter resources are very limited. Sometimes
the problem is that of getting the necessary backups. So, I
would appreciate your sensitivity to this matter. Thank you.

DR. CONWAY-WELCH: I'm not sure I understand the
problem.

MS. BLOCK: Well, Ms. Nishimura, who is our
interpreter, she was hired for two hours, for a two hour period
of time.

DR. CONWAY-WELCH: I see.

MS. BLOCK: And we have gone past that. I'm sorry, I
didn't make that clear. We've gone past the time limit, the
alloted time, and it's understandable that she is very tired.

DR. CONWAY-WELCH: I understand that, and I thank you.

I had a brief question in terms of the ways in which
sexuality is integrated into the curriculum at Gallaudet, or how
general areas of sexuality are addressed. And in addition, have
you added explicit information about AIDS in a general curriculum
effort? Obviously, Gallaudet is a very special place, and only a
few people who are hearing impaired can access the University.

239

 

 
 

Is there also a continuing education effort that's directed by
the University regarding sexuality in general and AIDS in
particular?

MS. BLOCK: I can comment with respect to the sex
education that occurs in general, both at Gallaudet and at other
places around the U.S. But, I think Holly Bell, who I've brought
with me, might be the appropriate person to address what's
happening with regard to AIDS, specifically, on campus.

MS. BELL: On the campus four years ago, we formed an
AIDS task force that has become the committee formally
recognized by the University. We have developed various
activities, various materials for the students. As you said,
exactly what happens is they are only available to the students
on the campus, so a lot of the population is very much overlooked
because our efforts are for the students.

We've had safer sex kits that we passed out. We've had
AIDS awareness days with the high school students as well as with
the college students several times. We've had various speakers
for faculty, staff, and students. We've tried to have once a
month or every other month -- and the committee has gotten
various requests now from outside organizations to respond to
curriculum, to materials development, to policies. The committee
also has established a policy for the University in responding to
AIDS itself.

At our prep campus there is, as a part of the health
curriculum, AIDS-specific information. They do depend a lot on
the student health service to do a lot of the AIDS education.
And that's fine, because probably we are the most knowledgeable
people, but we just don't have the resources to do what needs to
be done and give patient care also.

So, there is that sort of gap with that. Some of the
teachers now are developing curriculum and training kinds of
things. But, there does exist that gap. In the community, you
can probably respond better to that.

MS. BLOCK: Many years ago I used to be involved in
teaching human sexuality at the model secondary school for the
deaf. That is the high school program which is on the Gallaudet
University Campus. There is now a formalized curriculum, and I
understand that it is available for dissemination.

Now, I'm not sure that that curriculum included
information on AIDS. I don't think it does. I think that where
it probably covers AIDS-related information is within the health
classes within the high school level, as it probably happens in
many other residential schools for the deaf and also in day

240

 

 
 

 

programs for the deaf around the country. With regard to
mainstream programs, or mainstream students, deaf students in
mainstream programs I mean, around the country, we really do not
know what is being done in this area. I do know that a grant
application has been made through the Gallaudet University
Research Department to investigate what is being done with
respect to AIDS education around the country, both within the
residential school and within the public school programs.

Now, whether that grant is going to be funded or not,
that I'm not sure of. We don't know. We won't know for several
months yet.

DR. CONWAY-WELCH: I see. Thank you.
MS. BLOCK: But, it is a critical need.
CHAIRMAN WATKINS: Ms. Gebbie?

MRS. GEBBIE: To carry on the same line of
questioning, what proportion of hearing impaired young people are
in special programs and what proportion are in regular public
school, integrated kinds of programs?

MS. BLOCK: I don't have that information on hand
right now. Let me say -- let me estimate just off the top of my
head. I would say that K through 12 school age children, I would
Say perhaps one fourth to one third are in residential school
programs for the deaf, while the remaining are in mainstream
programs or in public schools or for public students.

Now, the term "mainstream," means many different
things, and that I'm sure you're aware of. It can mean one room
with deaf children, or it could mean a full integration, or it
could be partial integration within a classroom with hearing
students with or without support services.

MRS. GEBBIE: And again, a similar question to the one
I asked Ms. McGuire. To your knowledge, are most of those kids
getting some basic health curriculum into which this AIDS
information could be integrated that is appropriate for them that
they're understanding? Or, are we going to have to also push for
some broader materials that are appropriate to the hearing-
impaired?

MS. BELL: From the requests that I get regularly,
there is no curriculum. And the teachers are also frustrated,
because they don't know themselves. They're being told, "You
will teach AIDS education," and they don't know themselves enough
about AIDS to be teaching that. And doubling that problem, some
teenagers get some education at home. Not wonderful education
often, but a deaf child who's parents don't know sign language,

241

 

 
 

 

most of the time what's happening is they get nothing. So,
they're getting oftentimes incorrect information from peers.
There's just really a gap with that kind of thing, and they don't
get the secondary incidental information that we have from
sitting listening to our parents on the telephone, or a family
dinner conversation or whatever. They just don't know about
that.

MS. BLOCK: To add to that, when we think about the
number of deaf students in a mainstream program or within a
public school, these students may not have support services. I
would say that a large percentage of them do not have support
services. Therefore, they do miss a lot in getting this critical
information.

MRS. GEBBIE: One last question. With regard to
adults, those that are not in school, are the majority of
hearing-impaired adults tied in with an identifiable service
network that could be tapped to get appropriate AIDS-related
information out to them, or do they tend to be disconnected from
that network so that they're hard to identify or find ina
community?

MS. BLOCK: There's no service network that would be
appropriate for hearing-impaired people. For example, the
national 800 hotlines, they're not TDD accessible.

MRS. GEBBIE: Not at all?

MS. BELL: No. We've been efforting with CDC to
implement that, but there've been a lot of blockades related to
that. Accessibility for a hearing-impaired person is
nonexistent. Some local people have that, but that's your bigger
cities. So, someone who's in a little town somewhere in
Pennsylvania, for example, they have nothing. They have no
resources period.

Often, what's happening is an already overburdened
health unit is being forced to care for deaf people when they
don't know anything about how to educate deaf people, how to
communicate. There's that double stigma of, is it because I'm
HIV-positive that you don't want to take care of me, or is it
because you can't communicate with me because I'm deaf? So,
it's a double psychological stigma.

MRS. GEBBIE: I'm not sure I used the right word when I
asked about connected to a service network. I wasn't thinking
just of an organized care giving network, but an association,
organizations of any kind through which one might get out
information. And your answer was, no, there really isn't any
substantial portion of the adult hearing-impaired population
that can be accessed in a direct kind of way?

242

 

 
 

 

MS. BELL: Well, from the responses that I've gotten
from people, if you live in a large city where there is a lot of
service oriented to deafness available, that's fine. But, if
you're outside of that big city area, then, no, there's nothing.

MS. BLOCK: But, at the same time, even for a person
like myself who lives in a large city in this area, I would not
get full information. I might be watching television. There
might be something on the news program, and I see some kind of
news blurb or something. It's a major finding, but I'm only
getting one side of the story. I really don't have contact. I
mean, I have captions. Other news programs may not have
captions, and may be presenting information on AIDS, and the
information is not disseminated. That news program may not have
captions, so I'm not getting the information.

So, captions that have very selected information --
like, when I call there may be a very few resources within this
area. That says that, you know, for people who have TDDs, they
may not be trained to answer a conversation on the TDD, even for
centers that have TDDs. And that's another point. That points
to another problem, and that is of training people to work with
deaf persons.

MS. BELL: Also, if there are services available, what
happens frequently with our students that we refer out in the
community, if you're forced to do writing back and forth with a
person your explanations become shorter and shorter and shorter
every time. So, our students come back with maybe one third of
the picture related to HIV, anything. It is never a complete
picture, or enough to even make a decision, or often enough to
make a wrong decision.

MRS. GEBBIE: Thank you very much.
CHAIRMAN WATKINS: Doctor Primm?

- DR. PRIMM: Mr. Burnett, I could not help but be
impressed with your resume. I saw there that you were an
emergency medical technician, certified as such. You finished
the Methodist Hospital in Indiana, and so forth.

We had some very passionate testimony earlier today
about AIDS patients in Philadelphia and in New York who might be
in homes and where emergency medical technicians might come in
because the patient would have apoplexy or faint or whatever the
case might be, and that there is a refusal of the emergency
medical technicians even to take out any of their equipment to
try to resuscitate such an individual.

243

 

 
 

 

What ends up happening to these individuals is that the
people who run the hospice or the home where they might be
staying have to take them to the hospital and administer
whatever aid that might have been able to resuscitate them and
keep them alive. What would you do in situations like that?

MR. BURNETT: Okay --

DR. PRIMM: That's the first question. The second one
I'd like to ask you is that in your television emission here
there were a number of people that you examine and some, I'm
sure, were positive. In the written testimony, three or four of
those that you might have examined in certain cities, I think in
Memphis you had two that were positive. What was the follow-up
from the mobile unit on those individuals who tested positive for
the antibody to HIV?

MR. BURNETT: Okay. In response to your first
question pertaining to the EMS system, that is an issue that I
have had to deal with personally. We in our area have -- I
shouldn't say our area -~- one of the areas we supply mutual aid
for has an induction center into the penal system of the State of
Indiana. There are people coming through there on a continuous
basis who are HIV-positive. And I think, from dealing with it on
a state level -- I was actively involved with this advanced EMT
program in getting it started in the state, and one of the main
topics was, "Well, the more people we have out there messing with
needles and what not, that's going to expose them more and more
to blood. It's just going to increase these chances."

I think we were able to determine that the departments
across the state that devote a lot of time and energy and effort
into education programs on a departmental level have overcome
that fear of the virus, and we have never had any problems with
it. I have had several individuals who have contacted me at home
and said, "Hey, I found out after I got to the hospital that that
patient we picked up yesterday was HIV-positive. What should I
do?" And you start talking to them and they realize the fact,
well, yes, they were wearing gloves. They picked this gentleman
up off the couch, moved him to a stretcher, and proceeded on.

Now, I might interject some of my own personal
feelings towards that issue. You're out there to serve the
community. You're out there to do a job. It's an inherent risk.
There's risk inherent with fire-fighting. There's risk inherent
with anything. You're performing a public service. You're out
there to treat whoever calls upon you to render that service, and
I personally wouldn't want anybody working on me that's going to
say, "Hey, I'm sorry. You might have something contagious. I'm
not going to treat you." I would not have any respect for that
individual whatsoever. What was your second question?

244

 

 
 

 

DR. PRIMM: It was the follow-up on the number of
cases that you found positive in your mobile unit.

MR. BURNETT: Okay. As mentioned in the testimony, all
the ~- one of the requirements for participating in the program
is the family physician. And in each of the instances, the
family physician was notified and that family physician then
notified this person of their antibody status and provided for --

DR. PRIMM: Excuse me, did you get permission to
notify the family physician in those cases in Tennessee?

MR. BURNETT: Right. That is on --

DR. PRIMM: You got permission from the patient that
you examined?

MR. BURNETT: That's correct.

DR. PRIMM: And then, they said, "You can notify my
family physician"?

MR. BURNETT: Right. Like I say, if you'll look at the
registration form, it says right on the bottom, "I hereby give
permission to notify this physician should the results be
positive."

DR. PRIMM: Then what happened?

MR. BURNETT: Well, after their physician is notified,
then to the best of my knowledge -- Doctor SerVaas would probably
be better able to answer that question.

DR. PRIMM: I only asked that question because you can
see how important it is as you got to that point. When you get
to that point and you say you notified the family physician, but
we don't know what he did.

Now, you heard Doctor Siegel on your panel talk about
physicians, nurses, physician's assistants, not knowing what to
do with HIV-positive people, nor with people who have AIDS. So,
my concern here is to bring out here that we need massive
education programs, even if we have mobile units, for those
individuals to whom we are going to refer people to, and some
kind of follow-up. Okay?

MR. BURNETT: Yes.

DR. PRIMM: Further, to make sure that that doctor did
what he was supposed to do for that person. Because, if he's
just left out there hanging, there's a possibility that suicide
is a risk, homicide is a risk, and all kinds of other problems.

245

 

 
 

 

I admire the work that you all are doing in
relationship to the mobile unit, but we need good follow-up to
make sure that that person being examined is unquestionably taken
care of in the proper fashion.

MR. BURNETT: Okay.

CHAIRMAN WATKINS: Let me ask if there's any further
questions for Ms. Block or Ms. Bell. I think it's an imposition
on them to have the signers stay here with us for a lengthy
period of time. So, we'll continue with questioning. Any other
questions for Ms. Block? Any other questions for Ms. Block?

I'd like to thank you, Ms. Block, and Ms. Bell. I
think it would have been a terrible void in our report had we not
had your testimony here today. I know the staff has been waiting
to have this testimony from you and it's very important that we
ensure that you're not forgotten in this AIDS epidemic, and I can
assure you we will not.

Your testimony has been very important to us today, and
I don't know what your time constraints are but we want to thank
you and those that have helped you today. I know Ms. Nishimura
was here for most of the testimony and stayed long after 4:00,
and we appreciate that very much. But, it was important
testimony and feel free to leave or stay if you like and listen
to the remainder of the questioning.

MS. BLOCK: Thank you very much. We also welcome
further dialogue with the Commission on this very critical issue.
Thank you very much.

CHAIRMAN WATKINS: We have a lot to do in the nation to
support you. I can see that from the testimony today. Thank you
very much.

DR. PRIMM: Admiral Watkins?

CHAIRMAN WATKINS: Yes?

DR. PRIMM: I'd like to ask, the conference that
you're holding in June, is that an open conference? Can anyone
come to that?

MS. BLOCK: Yes, you'll find this in your packets.

DR. PRIMM: Yes, thank you.

CHAIRMAN WATKINS: Thank you very much.

MS. BLOCK: Thank you.

246

 
 

 

 

we

CHAIRMAN WATKINS: Now, let's continue with the
questioning.

Doctor Primm, had you finished with the questioning of
Mr. Burnett, or would you want to follow-up?

DR. PRIMM: Yes, I did.

Apparently, you all had examined patients at Teen
Challenge, which is a narcotic rehabilitation center for youth, a
Christian-oriented one. What was your sero-prevalence rate among
that patient population that you examined?

MR. BURNETT: I left that out in the other room. I
don't have that with me. I will get it for you after the -- it
is here.

DR. PRIMM: Was it low? Was it high?

MR. BURNETT: It was higher than we have found
anywhere else in any of our testing.

DR. PRIMM: Okay. Now, Teen Challenge, they have a
physician at that facility?

MR. BURNETT: Yes. It was a medical center in the
town that supplied the physicians for the Teen Challenge.

Now, I can also add what I didn't get a chance to
bring out in the testimony. As I mentioned in the testimony, I
became very close to a lot of people at the Center, from the
Director on down. And after talking to the Director after we had
done the testing and before he had received any of the results
back -- or his men had received the results back -- there was a
concern of the positive individuals dropping out of the program
feeling they were a danger to the rest of the students at the
Center and dropping out of the program.

After talking to him approximately four months after
the results had been disseminated, I was told that of all the
members that had turned out positive there were three of four of
them that did leave the program. However, within like three
weeks after they had left the program and receiving further
counseling, they all did come back to the program. So, overall
there was not one single person from the program lost due to the
fact that they were HIV-positive.

And in addition, before this testing program, as I
mentioned in the testimony, they had all heard of this risk, and
there were very few of them that had been tested. After the
program, just that reassurance that, "Yes, we've been tested.

247

 

 
 

 

Yes, we have straightened our lives out. We are no longer
dependent on these drugs," just getting rid of that uncertainty
of, "Well, maybe I am and maybe I'm not." And you can check with
Brother Sonny Oliver from the Center. He's the Director there.
You know, the whole attitude of the entire program has been
improved simply as a result of this one week stay in this
testing progran.

DR. PRIMM: Did anyone ask those people who dropped out
of the program after they found what their HIV status was why
they dropped out of the program?

MR. BURNETT: That I don't know.
DR. PRIMM: Thank you.

CHAIRMAN WATKINS: We have time for one more question.
We've already extended our next witness a half an hour.

So, Doctor SerVaas, would you like to close out the
questioning?

DR. SerVAAS: Well, Mr. Burnett, you mentioned that the
ones who weren't positive in these programs in the Teen
Challenge took care of the ones who were positive. Isn't that
right?

MR. BURNETT: Exactly.

DR. SerVAAS: They did rally round so that these kids
had support?

MR. BURNETT: Right. Like I mentioned, the ones that
did leave, they left under the fear that they might infect the
others. It was a general consensus of the Teen Challenge Center
as a whole that, "We're all in this boat together. We were all
IV drug users. We've all dedicated our lives to changing that
problem. Now, we might as well extend our efforts to help one
another out." Like I said, all in all it was phenomenal, the
response that we did get.

DR. SerVAAS: I just wanted to add, in answer to
Benny's question, Mr. Burnett wouldn't be doing this, but we have
always followed up with a doctor to make sure that that doctor
has -- we go far beyond that in many cases, because we have only
32 to worry about. In Memphis, or wherever it is, we speak
directly on the telephone physician to physician, and haven't
ever had a breech in confidentiality.

CHAIRMAN WATKINS: Thank you very much, Mr. Burnett,
Mr. Silvers, for coming today. And thank you again for the
support you gave us in Indianapolis.

248

 

 

 
 

 

MR. BURNETT: You're very welcome.

CHAIRMAN WATKINS: We'd like to go into the final
panel today. A representative from the National Medical
Association, Doctor Virginia Caine is with us. She's Assistant
Professor of Medicine, Division of Infectious Diseases, Indiana
University School of Medicine; Director of Communicable Diseases,
Marion County Health Department.

Doctor Caine is here today for a number of reasons.
One of my closest friends, Doctor Montague Cobb, former
President of the NAACP and now Professor Emeritus at Howard
University, a medical doctor, I think one of the nation's great
leaders, came to call on me and urged that we make sure we hear
from the National Medical Association. Again, I think Doctor
Cobb always has peaked up my sensitivity over the years since
I've known him, and I'm delighted that he encouraged us to bring
Doctor Caine here today.

I think you can provide us, Doctor Caine, with another
perspective that perhaps we haven't heard as clearly articulated
yet, and I'm delighted to have you here. I'm sorry we were so
late in getting you started on the final panel of the day, but
we're anxious to hear your testimony so please proceed.

DR. CAINE: Well, thank you. It's a pleasure to have
the opportunity to address Admiral Watkins and the Commission
today on some of the issues facing minorities in regard to the
AIDS crisis.

I'd also like to introduce along with me, Mr. Bill
Garrett, who is our Executive Vice President of our National
Medical Association.

CHAIRMAN WATKINS: Welcome, Mr. Garrett.

DR. CAINE: Good. My name is Virginia Caine. I am an
Assistant Professor of Medicine in the Division of Infectious
Diseases at the Indiana University School of Medicine in
Indianapolis, Indiana. I hold the position of Director of
Communicable Diseases for the local health department in Indiana.
As former Chairman of the School Guidelines Committee for the
Indiana State Board of Health AIDS Advisor Committee, I have had
extended involvement in the AIDS crisis. I appear here today on
behalf of the National Medical Association representing the
nation's largest minority physician association founded in 1895.

I think as most of you are aware, AIDS is emerging as
one of the most significant public health problems ever to face
minorities. While blacks comprise 12 percent of the United
States population, cases of AIDS reported to the Centers for

249

 
 

Disease Control show that 26 percent are occurring among blacks.
Black women comprise 52 percent of all the AIDS cases in women,
and minority children represent 80 percent of all of the children
with AIDS. However, it's interesting to note that the
distribution of AIDS by risk factors among Hispanics and blacks
are substantially different from their white counterparts. For
Hispanics and blacks, IV drug abuse accounts for a much larger
proportion of the AIDS cases.

Now, AIDS reports have tended to stress the prevalence
of disease among gay white males. And it may have severely
limited and hampered minority access to available education,
funding, and community health services. As a result, minorities
mistakenly may have and still minimize the seriousness of this
AIDS epidemic and their perception of risk to themselves,
unaware that certain behaviors may place them at an increased
risk for infection.

Now, based on a report from the National Center for
Health Statistics, black individuals are more likely, are more
than twice as likely as their white counterparts to state that
they know nothing about AIDS and are more likely to perceive a
threat of the AIDS virus infection as occurring from many of the
casual contacts.

In 1986, the Secretary's Task Force on Blacks and
Minority Health reported that minorities suffer excess deaths
from several diseases, including chemical dependency, cardio-
vascular disease, and cancer. But, the report also described
that lack of access to health care for minority persons living in
medically under-served areas.

You know and I know that blacks and hispanics have
higher rates of poverty and are more likely than non-minorities
to have no insurance. They're under-insured, or they may rely on
Medicaid, which may not provide all of the services that they
need. Many minorities who are HIV-infected live in concentrated
urban areas where the health care delivery system is already
over-stressed.

But, also noted as a problem severely limiting
minority cases to quality medical care is the fact that
minorities are severely under-represented in the health
professional fields. As the number of AIDS cases increases, this
disparity will be heightened. These staggering statistics
combined with a health system that puts minorities at a great
disadvantage, as documented in the federal government's report,
creates a bleak picture of the future of the minority community
with respect to the AIDS epidemic.

Therefore, the future course of the HIV epidemic in the
minority population will greatly depend on the effectiveness of

250

 
 

 

our ability to address these drug abuse problems and
homosexuality among blacks. Most IV drug abusers come from
poverty stricken inner city areas in which inadequate health
care is the rule, whether they have AIDS or not.

In consequence, many of these minorities with AIDS are
typically not diagnosed nor treated until relatively late in the
course of their illness where they have a lot of severe medical
complications shortening their life span. The average life
expectancy for a black person with AIDS is 19 weeks, compared to
two years for AIDS in their white counterparts. Incredible.

IV drug abusers are already stigmatized, and AIDS only
adds to the difficulty of overcoming discrimination and service
delivery to those who have had the disease. Along with these
difficulties, many are unemployed, lack personal resources, and
they may be illiterate to the point that they may not know
what's available to them in terms of public entitlements,
hampering our abilities to place them in nursing homes or provide
them with ambulatory health care services such as homes and
hospice care.

Notwithstanding this, a lot of these minority AIDS
patients lifestyle situations are very unstable. Due to the fact
that drug use is illegal, they may be less likely to seek out
medical care. Although we do have outpatient substance abuse
services available, a lot of the minority IV drug abusers may not
consistently avail themselves of these services.

Therefore, creative and innovative strategies for
gaining access to these IV drug abusers and educating then,
whether it's with an ex-addict or a street out-worker, or as the
coupon distribution that they have in New Jersey, or mobile
outreach vans, these have to be initiated and expanded.

The usual focus of a drug treatment facility is to
return that client to productive life. But, if you return this
client where he doesn't have a job, or you may place him in
housing where it's such a war zone, and he may have to face the
fact that he's got a terminal illness, then you've got an
individual who may be poorly motivated. He may even exhibit
anti-social behavior, and he's going to hold onto that addiction
regardless of the risk that's entailed in regard to this.

A lot of other problems, we have noted that volunteer
services for a lot of these minority AIDS patients have had
relatively limited success. We suspect the problem is due to
the fact of lack of minority volunteers, leading to ethnic
differences and possibly some social class differences between
the patients and non-minority volunteers.

251

 

 
 

 

And lastly, we can't forget that there are homosexual
and bisexual blacks. Cultural pressures, lack of organization
and funding support, and feeling out of place in gay white
organizations has resulted in many of these minorities being
closeted and inaccessible to the traditional community
organizations or AIDS in-service groups.

And therefore, I'd like to leave you with some
recommendations if I may. That is, number one, develop efforts
that address the specifically identified AIDS prevention needs of
the black and Hispanic communities, with the assistance of
minority community representatives, and conducted with the
participation and/or support of organizations and individuals
within those communities. Who knows us better than ourselves?

Prevention strategies must be targeted to specific
populations, having particular relevance to HIV infection in
minority communities. And it must be sensitive to cultural and
social economic factors which may be unique to these communities.
Conduct surveys and research on attitudes, knowledge, and
behaviors, to improve understanding and increase the
effectiveness of HIV infection prevention efforts in minority
populations. A message that's applicable to the gay white male
may not be applicable to the gay black male.

Minorities and minority organizations should be
involved in federal, state, and local policy development,
research, and program implementation and prevention of HIV
infection in minority populations.

Increased funding should be made available to minority
hospitals and minority service programs, where lack of funding,
overworked staff, poor salary, lack of medical equipment, has
resulted in difficulty attracting and retaining personnel of high
caliber in these major institutions that service a large minority
population who are at risk.

Increased funding should be made available to improve
the education of minority health care professionals in the
diagnosis, care, and counseling of these infected patients.
Because, we are the ones that see a significant proportion of
these minority patients.

There is a need for appropriate distribution of
available research funding proposals into the minority
communities. A lot of proposals are out there that we are
unaware of, and that information is not filtered down to us. A
lot of times these grant proposals have a short notice where you
have to get the grant in within a matter of a month to two
months, and it's sometimes extremely difficult to orchestrate
the organization that's needed to apply for a lot of these funds.

252

 
 

 

 

oo

And the already existing program grants that are out
there to provide education on AIDS for the general public that do
not target minorities should make possible funding of
subcontractors located within the minority communities to provide
an organized program of outreach, education, counseling, and
treatment services in these communities. I would think it's only
fair that parity should be the aim for representation in funding,
and direct funding should be made available to minority agencies
to do education for minorities.

Major treatment modalities for dealing with IV drug
abusers should be made available on demand, and current
treatment capacity increased based on the demand in a timely
fashion. Quality assurance should be monitored, because rates of
effectiveness of treatment are directly related to retention in
those treatments. And blacks are less likely to be retained in
these programs compared to their white counterparts.

Although we are not opposed to looking at pilot
programs which utilized exchanging clean syringes until
individuals can be placed in the traditional drug treatment
program, we consider this less optimal as a treatment approach to
the drug abuse problem.

Intermediate health care facilities and housing for
HIV-infected individuals should be made more readily available.
We should devote efforts to increase the number of minorities in
the health professions field. I don't know if you realize it out
there, but high cost has been very prohibitive for minority
students matriculating into medical schools, subsequently
decreasing minority enrollment.

Such organizations as the National Health Service
Corporation could establish scholarship funds on the
undergraduate level to encourage minorities to go into the
medical field. And individuals who are already out there who
still have an obligation to pay back their loan might be offered
the option of serving in an AIDS endemic area to meet their
financial obligations.

And lastly, we'd like to state that all newly
federally funded AIDS treatment service programs should include
local advisory boards with appropriate minority representation,
if you're in a city that's got minorities.

Thank you.

CHAIRMAN WATKINS: Thank you very much, Doctor Caine.
We're going to open the questions for the panel from Doctor
Primm.

DR. PRIMM: Thank you, Mr. Chairman.

253

 
 

 

Doctor Caine, first I'd like to applaud you personally
for such a candid and certainly complete list of
recommendations, and sort of spelling out the problem in a very
articulate manner for us to understand what's going on and what
the needs are and what the National Medical Association perceives
that they are.

I'm having some problems, both with myself after
sitting on this Commission for a long period of time and seeing
the American Medical Association come before us, the Institute of
Medicine, the National Institutes of Health, and all the major
organizations in this country -- and I sometimes, as some of my
fellow panel members probably, wonder why is there a need for a
National Medical Association when we have an American Medical
Association?

I can understand why there might have been a need in
1865 or whenever it was founded and right on up through the time
when we weren't allowed -- myself, I remember trying to get into
the American Medical Association when I got out of medical
school in the '60s, and I could not belong to my county society,
so therefore I could not join the American Medical Association.

You, on the other hand, went to a midwestern
university, a prestigious eastern medical college. You are an
assistant professor at a prestigious medical college in Indiana,
sort of a border state in a sense. I am quite certain that to
get where you got you had to be quite adept at learning and
academically proficient. I'm wondering why you belong to the
National Medical Association? Why is it still an entity? And
perhaps Mr. Garret could help you, if he would so desire.

DR. CAINE: Okay. Well, let me just say that I really
got started when I was in medical school. I came from the
southern state of Arkansas, and I went to New York, and I guess
you know you consider all those states that are similar --

CHAIRMAN WATKINS: I put him up to this question,
Doctor Caine, so it's a friendly question.

DR. CAINE: Anyone from New York? I'll have to be real
careful how I answer this question.

But, I think it's a @difficult problem. When you find
yourself in a medical class that's greater than 120, and you're
only one of four blacks in that particular class, and you're
learning just a different set of cultural ethics -- ethnic
groups in New York, I think it's like no other state compared to
any other places that I see. You want someone that you can
relate to.

254

 
 

 

In a lot of the white medical institutions there's a
lack of minority faculty there for you to relate to as role
models. Where the National Medical Association has fitted in is
that they do a tremendous job of networking. They give you a lot
of resources in terms of how to handle the difficulties that a
young minority person may face who doesn't have the
sophistication or the knowledge base to know how to matriculate
in an institution like that in a place that is so foreign to them
that they've never matriculated before.

And so, you have a lot of the expertise and a lot of
the support and a lot of advice that's given as a result of this
organization that you don't find, unfortunately sometimes, in a
lot of these institutions who have their own problems and their
own unique needs that they are unaware of some of the problems
that I think a young minority person may face.

And then, I think it's tradition. You know,
especially in the South, we're very traditional. And I think as
a result, for as long as I can remember -- I have an uncle who is
a physician, and of course who belongs to the National Medical
Association. He's got three kids of his who are physicians who
belong to the Association as well as ourselves. And so, we're
well respected in the community as providing leadership to the
minority population in terms of what's best for them in their
health care.

You know, you can just look at history. Let's just go
to politics. I know everybody's interested in politics. When
you see Jesse Jackson run, over 90 percent of minorities come out
to support him. They recognize public figures. They recognize
public leaders in the community who have provided services for
them, and they support then.

And yet, if you had a white counterpart leader who's
coming out and giving the same message, I doubt very seriously
that you'd see the support that you're seeing. That may be, in
some measure, in terms of answering your question. I don't know.

MR. GARRETT: Well, I think there's one other thing I'd
like to add to that.

The Association from its inception and to date has as
it's goal an objective to serve the community. Our programs are
geared to those disease entities that particularly affect the
inner city communities, hypertension, diabetes, AIDS, that has
been a tradition. As a matter of fact, in 1982, at our annual
convention, one of the major topics then was the effect of AIDS
on the black community. So, the NMA has had an interest in
those problems that particularly affect the black community. And
it is a part of our goal and objective and always has been.

255

 

 
 

 

DR. PRIMM: Well, I certainly want to thank you for
making that public, because I do feel too as you do, Doctor. I
might have thrown you what you might have considered a curve
ball, but I think you probably knew why I threw you that curve
ball and you caught it quite well.

I know why there's an NMA and why we need one. I
think if we didn't have one, that our voices nor our specific
perspective on certain issues would be heard and made as clear as
you have made the issues that confront us today. I think your
spelling out the recommendations further sort of echoes what I've
tried to do as a member of society and the medical community, and
certainly as a member of this Commission, and you've done it
quite well.

I certainly again want to commend you for your
preparation of this document and certainly I'm going to push hard
among my Commissioners to get unanimity to accept some of these
recommendations that the NMA has made.

So, thank you, Mr. Chairman.

DR. CAINE: Thank you very much.
CHAIRMAN WATKINS: Doctor SerVaas?
DR. CAINE: Hi, Doctor SerVaas.

DR. SerVAAS: Doctor Caine, I commend you too anda
welcome to the Committee.

DR. CAINE: Thank you.

DR. SerVAAS: I think our other panel members might
like to hear more about you, because you have a tremendous job.
You came into a situation with low birth weights in babies, and -

DR.: CAINE: Teenage pregnancy.

DR. SerVAAS: We hear so many good things about you in
Indiana and we're all looking forward to having you change a lot
of things.

The thing that I wanted to ask you about was, because
of our low birth weight, and we think we have a lot of teenage
pregnancies in Marion County, and I'm sure you've heard the bad
news about that we're tying for third place -- or I mean, llth
place with five other counties in number of HIV-positive
teenagers.

DR. CAINE: Right.

256

 
 

 

DR. SerVAAS: And that the State of Indiana, out of the
tests that they did, we have eight positive teenagers out of
18,000 which is .4 per thousand, which is pretty bad for the
state as well. I just wonder it you could --

DR. CAINE: How do we account for that?

DR. SerVAAS: Is it complacency on the part of -=- in
Indiana, do our kids all think that because we have only 250
cases or something that we aren't vulnerable out there and
they're complacent in their spreading it? Is that what you
think it is?

DR. CAINE: I think it's multi-faceted. I think part
of the problem lies in the fact -- I'm also running the STD
Clinic, Sexually Transmitted Disease Clinic, so I have an
opportunity to look at statistics of sexually transmitted
diseases in the adolescent population. And what I see is a
striking increase in sexually transmitted diseases in the
adolescent population that we don't see in the adults. And it's
appalling.

So, what does that suggest to you? That teenagers are
sexually active. And I think part of the problem comes due to
the fact that there's probably a lack of sexual education
probably in the schools where they can receive the education.

Secondly, I think it's not being done at home. I
think you have to hit them on several fronts. And I'm concerned
that maybe there is some complacency. But, you know, sexuality
is such a difficult subject. To a lot of adults and parents that
may be an uncomfortable subject in terms of discussing it with
their children.

I'm happy to say that we've been invited quite
frequently now in a number of churches and a number of school
programs where they're being very candid and coming out very
forcibly in terms of these adolescents that you should not be
having sexual contact. But, I don't think that's being
emphasized on enough basis from several angles, and I think
that's probably one of the major issues that we face. And, you
know, kids are like anything else. You know, they're invincible.

DR. SerVAAS: Well, I think that you're right. It's
probably the schools. Because, you've had Doctor Frank Johnson,
who's a marvelous man, and I don't think it's the leadership
there in the medical community. I think you're probably on
target with the education.

DR. CAINE: Right. I think the problem comes, though,
that there are some subsegment of the population who feels that

257

 

 
 

 

if you provide sexual education in the schools it's like
increasing the validity or possibly encouraging sexual activity
in teenagers where this is not occurring.

So, I think you have to -- it's going to be a very
difficult problem, and I think it's something that we're working
on very rapidly to try to get a curriculum where everybody is
comfortable with it. It may mean that we may have three
different curriculums and we'll ask the parent to choose which
one you're most comfortable with in terms of the sex education
message we're going to give your kid. And we need to encourage
parents to come in to hear the same message with their child so
they can discuss these issues after the school was in place.

But, I think we're going to have to use a whole number
of agencies where we're going to have to interconnect and
network in order to combat this problen.

DR. SerVAAS: Thank you. And thank you for coming.
DR. CAINE: Thank you for inviting me.
DR. SerVAAS: I hope you're not catching :the 5:20.

DR. CAINE: No, I'm lucky enough that I've got an
8:05.

MRS. GEBBIE: Is that it? Doctor Conway-Welch?

-DR. CONWAY-WELCH: Just a brief clarification. The
statistic that you cited that among blacks once the disease
progresses to AIDS there is a life expectancy of 18 weeks as
opposed to two years. Could you break that down for me in terms
of women and men?

DR. CAINE: I think the study was predominantly seen in
mostly women, and the majority of these patients were IV drug
abusers. It appears as though IV drug abusers, sometimes due to
the nature of their habit, they may have symptoms that they
associate with their IV drug abuse and are not aware that some of
their symptoms are related to a possible HIV infection.

So, blacks anyway, on the whole compared to their
white counterparts whether they have AIDS or not, are less likely
to seek health care early compared to their white counterparts.
But, I also think due to the nature of the IV drug abuse and
you're injecting a lot of impurities, and a lot of these IV drug
abusers are more susceptible to getting a lot of infections which
is going to significantly progress the course of their disease
compared to their white counterparts.

258

 

 
 

 

DR. CONWAY-WELCH: Thank you. One of the other
reasons I asked that question was the suspicion that because of
differences in immune response, that women may be more
susceptible to more rapid onset of the disease. I wondered if
that was any part of it.

DR. CAINE: I don't think so.
DR. CONWAY-WELCH: Thank you.
CHAIRMAN WATKINS: Doctor Lilly?

DR. LILLY: Several months ago I sat down with the CDC
statistics on AIDS that had been reported to them and separated
out the cases of AIDS that had occurred among IV drug abusers.
And as you've indicated, minorities were very markedly over-
represented by comparison with the general population in that
group. On the other hand, if one takes the cases of AIDS that
have been reported that have occurred among gay men, then the
-blacks and Hispanics in that group were present in roughly the
proportion that they're present in the general population.

DR. CAINE: Okay.

DR. LILLY: So, all this is simply to say that -- to
ask about the minority gay people. They do exist. They are not
over-represented in the AIDS population, but they certainly are
there. And I'm wondering if you have any remarks to make about
how we should deal with these people? I could make one further
comment. For a long time I was on the Board of the Gay Men's
Health Crisis, where I had to do with the Education Committee.

We found that we were very good at dealing with gays that were
black, but we were not very good at dealing with blacks that were
gay, if you get my nuance there.

DR. CAINE: Yes.

DR. LILLY: We simply found that there were a number of
black gays who really identified much more as gays, in a sense,
than as blacks, not that they didn't recognize that. But then
there were others who were first black and then way afterwards,
gay. We didn't speak the same language. So, something has to be
done to reach these people.

DR. CAINE: I think there's a problem in terms of
social/cultural differences. For the black gay male, there's a
thing in the black community that they're very family oriented.
And so, there's a lot of cultural pressure. I think the black
community would be more likely to hear that a gay's an IV drug
abuser than a black person is gay. I think they just feel more
comfortable with that in a sense. And as a result, these black
gay men appear to be isolated.

259

 

 
 

 

Now, I have a number of black gay males who are HIV
infected, and they do not feel comfortable when -- I don't know -
- you were just in Indianapolis, and we have a Damian Center that
is the major support system for a lot of the gay population. And
they quite frequently tell me that they're very uncomfortable
being in that setting and they need something that's a little bit
unique to themselves. I don't know it it's a different language
that they speak, or they're very uncomfortable about coming out
and publicly telling us that they're gay.

But, there are a lot of psychosocial issues that need
to be targeted, and I think the only way to really reach them is
to have an outreach worker who is a gay male himself who knows
where to go to the places where they frequent, to go out and give
that message on a one to one basis. Because, a lot of them lack
the funding in most instances to organize themselves in the
necessary information that they may need.

DR. LILLY: Are you implying, or am I reading it right
that you feel that the stigma attached to homosexuality is even
worse among the black population than it is among the white
population? Certainly, in the white population it is far from
nonexistent.

DR. CAINE: I really think so, but it's more of a
subtle sort of undercurrent type thing that, you know, you
really can't put your finger on. But, that's the impression I'm
getting for a lot of the black gay males. Because, they're
perceived as being the head of their household type of thing.
Blacks are very traditionally oriented. And it's a type of thing
that the white gay males have been very open and out for a long
time, and so as a result the public has been much better able to
handle them compared to the black gay males. Now, we've always
known that black gay males have been out there. You know, we see
them in the churches. A lot of them are very artistic and
talented. But, it's the type of thing that we've never been
publicly candid in terms of discussing a lot of the issues in
regard to the black gay male.

DR. PRIMM: Mr. Chairman, and Frank?
DR. LILLY: Yes?

DR. PRIMM: Perhaps maybe I could help if you would
permit me, Doctor Caine.

DR. CAINE: I appreciate it.

DR. PRIMM: Black gay men do not come out of the
Closet. You would think that we only had two black gay famous
persons, and we only knew that they were gay after they died.

260

 
 

That's Willy Smith, and Bayard Rustin. No one had any idea about
their supposedly homosexuality while they were alive. And you
never hear of black gays declaring their sexual orientation if
they are rather famous or whatnot, though we have many bisexual,
homosexual gay men.

We don't have a support network for our black gay
persons. There is one that has been started, as you very well
know, with the headquarters here in Washington, associated now
with the National AIDS Network and is doing quite well. But, it
has not spread like the white gay very organized organizations,
very well heeled, like the Gay Men's Health Crisis.

Another point I'd like to make, if you look at the
distribution of transmission categories among blacks and among
Hispanics, it's quite shocking that more people come from the
homosexual, bisexual behavioral group, or transmission group,
than come from the intravenous drug abuse group. For example,
38 percent of our black cases are from homosexual or bisexual
black men, aS compared to 37 percent of our cases among
intravenous drug users.

DR. LILLY: Who's cases?

DR. PRIMM: Black cases.

DR. LILLY: In the CDC data?

DR. PRIMM: Yes.

DR. CAINE: Yes. In the CDC data.

DR. PRIMM: We have about 15,257 as of May 2nd. I'm
looking at it here. Thirty seven percent of our cases are
intravenous drug users, and 38 percent of our cases are
homosexual/bisexual men.

Now, if you added to that the other seven percent who
are homosexual/bisexual men and intravenous drug users, we'd
have 42 percent of our cases that would be intravenous drug use
or intravenous drug use related, and of course 38 percent being
homosexual/bisexual men -- quite the opposite from what one would
think. And 45 percent of Hispanic cases are among
homosexual/bisexual Hispanics, not among intravenous drug users.

DR. LILLY: I get my statistics from the MMWR, and
they --

DR. PRIMM: Well, here is the latest statistics from
the CDC, and I'm reading directly off of them, as of May 2nd of
this year. So, you know, that's another thing that the black
community never hears.

261

 

 
 

 

As a matter of fact, Doctor Caine was at a conference
in Indiana on Saturday, where I spoke. And I talked about that
very thing, that we don't realize that the majority of our
patients come from the ranks of homosexual/bisexual men. And
you know, if you add the two together, homosexual/bisexual and
intravenous drug users, then of course that number exceeds the
other number. But, we must realize that and begin to own up to
it and begin to do something about it and target that segment of
the community. I think the most shocking thing here, Doctor
Caine -- you mentioned it and it came through, but not sort of
neonish -- is that 11 percent of our cases are among heterosexual
people. Nine percent of those cases are black men heterosexual
cases, and about 34 percent of the cases among black women are
heterosexual cases. Now, that's quite Shocking. And black women
make up 52 percent of all women with this problem in this nation.

CHAIRMAN WATKINS: Doctor Lilly, you have a further
question?

DR. LILLY: No. I agree with you. Okay, 45 percent of
Hispanic cases reported to the CDC have been among homosexual
males. However, if one compares the number of cases among
whites, among blacks, and among Hispanics that occur in
homosexual males, and figures out that percentage, which is not a
percentage that has been calculated in these data, then one ends
up with percentages of the population that are roughly similar to
their representation in the general population. That's what I
was referring to, and I misunderstood what you were quoting.

CHAIRMAN WATKINS: Ms. Gebbie?

MRS. GEBBIE: Thank you for your patience with us in
this long afternoon.

We have heard testimony from a variety of witnesses
concerned about some of the same points you raise about making
services specific and available to minority populations in this
country. And we're going to be interested in mechanisms for
doing that. :

You work at least in part for a local health
department or are a part of the official organized system.
Sometimes directly and sometimes indirectly it has sounded like
the representatives of community based groups working with
minorities see official health agencies as more of a road block
then a help, and that they're asking us for funding mechanisms
that will go around those official agencies. I would appreciate
your comments on that whole issue of whether in trying to serve
these minority populations we should be working more with or more
apart from state and local health agencies.

262

 
 

DR. CAINE: Okay. Let me see if I can highlight a
point. I think Indianapolis this past year was allocated $25,000
specifically targeted for minority communities. Now, when you
look at the $7 million that were allocated last year specifically
for minority education, and you just go by incidence of AIDS
cases alone, you ask yourself, "Why only $25,000 allocated for
the number of cases that we have in Indianapolis?"

MRS. GEBBIE: That was your CDC --

DR. CAINE: That was our CDC money that was made
available to us.

MRS. GEBBIE: Yes.

DR. CAINE: And part of the problem lies in the fact
that some of your state agencies make a decision about how much
money they're going to request from the CDC. And we never have
any input until after the decision has been made. And so
there's a lot of concern in the minority community. Why so few
dollars, when you're telling us all the time that all this
money's available but that you are not requesting these funds?
And so, they're not made aware of, or play any role in any
decisions in requesting those funds. Now, the Indianapolis
minority community responded. I think that State Board of Health
received so many letters from various minority organizations
requesting increased fundings and why they felt the need, and
stated how many dollars were out there -- and as a result, this
coming year we've requested it to CDC and I suspect we will get
it. But, first it has to be requested.

So, I think it's a problem on a lot of the health
department agencies in terms of actually trying to make the
contacts with the minority organizations. Some of it involves
not knowing who to contact. But, I think it's not being done,
and it's something that strongly needs to be emphasized.

I think if you want to reach the very people that you
need to target, you need their input in terms of how to go about
doing this. I mean, we've been doing it for years. You know,
why put in a new agency or new set of services when we've been
already providing the services. You know, help us with funding.
Help us with technical support. And we need to play a role in
curtailing this AIDS epidemic.

MRS. GEBBIE: I want to be clear on your pronoun. Is
that "we" a "we, of the minority community organizations,"
rather than the "we, of the official health agencies"?

DR. CAINE: We of the minority communities, that's
correct.

263

 

 
 

 

MRS. GEBBIE: Yes.

MR. GARRETT: I'd just like to add one other thing
too, that the National Medical Association has 116 state and
local chapters throughout the country. A large percentage of our
physicians are private practicing physicians, and they are seeing
their patients. To date, the National Medical Association has
received no funding in this area, and we've applied for a number
of grants. That would be of great help.

MRS. GEBBIE: Did you participate in the national
meeting on AIDS in minorities that was held last summer?

MR. GARRETT: Yes, we had representation.
MRS. GEBBIE: You were a part of that?
MR. GARRETT: Yes.

MRS. GEBBIE: One last question. We've been using the
word "minority" generally, yet that encompasses a whole bunch of
different folks with different needs.

DR. CAINE: Exactly right.

MRS. GEBBIE: Several different Hispanic communities
speaking different languages.

DR. CAINE: Right.

MRS. GEBBIE: The black community may not all be
uniform either. It's sometimes overwhelming to think of funding
separately all of those different minority communities. Yet, it
also is nervous-making to think that you can find some one
umbrella that is adequate to get out to that variety of folks.

Do you have any sense about coalitions of groups serving
minorities and their ability to broker these services among those
disparate groups?

DR. CAINE: I will tell you that we were extremely
lucky, and I think it was due to a lot of hard work, that the
$25,000 that were allocated to minority organizations has the
Hispanic coalition group working with the black minority
agencies in collaboration to provide educational materials and
educational programs to the population at large.

But now, that's a midwestern city where Hispanics and
blacks may work very closely together in that city. It may be a
different story in a different geographic region. I think
what's required is that you have to talk to the local leaders to
find out what kind of problem you have and what kind of
networking you can do. But, I think this is the thing that's not

264

 

 

 
 

 

done often enough. It may just be a simple thing and that you
already have the networking in place, but you're unaware of it.
But then, I suspect you will also have problems where different
organizations feel that they should be the primary organization
handling this educational approach and they may not necessarily
work well with other agencies. But, I think we're pretty
fortunate in Indianapolis that that's not the case with us.

on

MRS. GEBBIE: Thank you.

CHAIRMAN WATKINS: Well, thank you very much. We're
going to close out the hearings today, Doctor Caine.

DR. PRIMM: Could I ask one more question?

CHAIRMAN WATKINS: Yes, certainly. Go ahead, Doctor
Primm.

DR. PRIMM: Okay. You also are in charge of the
‘Sexually Transmitted Disease Clinic.

DR. CAINE: I'm in charge of the Sexually Transmitted
Disease Clinic, and I'm in charge of all the anonymous HIV
testing sites as well.

DR. PRIMM: Okay. The question that I wanted to ask
was relative to Doctor Conway-Welch's question about deaths
being 19 weeks among blacks when they get AIDS, and of course two
years for whites, the longevity. My question was how much HTLV-I
infection have you seen in your Sexually Transmitted Disease
Clinics accompanying HIV-I infection that might be responsible
for hastening the progress, speeding the progress of HIV
infection to HIV disease, and of course early demise?

DR. CAINE: Okay. Let me have you ask me that
question one more time. I'm not sure I quite got it.

DR. PRIMM: How much HTLV-I infection are you seeing
concomitant with HIV-I infection among patients that might hasten
or speed up the progress of the disease to full-blown
opportunistic infection, and of course hastening -- as a factor
in hastening the. demise, along with all the other co-factors that
people might be participating in?

DR. CAINE: That's going to be a little bit difficult
for us to address, because in our Sexually Transmitted Disease
Clinic we just began HIV testing in November. So, our
statistics are a little bit low in terms of collaborating it with
other STDs in terms of hastening the progression of the disease.

DR. PRIMM: You are doing HIV testing now in your STD
clinics?

265

 

 
 

 

DR. CAINE: In our STD clinics, but that began --
DR. PRIMM: Anonymously?

DR. CAINE: No. That is confidential.

DR. PRIMM: Okay.

DR. CAINE: So, it is not being done anonymously.
DR. PRIMM: What about HTLV-I testing?

DR. CAINE: That's being done anonymously in our
anonymous testing site. That is taking place.

DR. PRIMM: My suggestion would be that you should
watch --

DR. CAINE: Part of our problem -- let me just say,
part of our problem -- I get the impression you want to know in
terms of looking at the HIV infection rate, how does it progress
in the black patient compared to the white patient.

DR. PRIMM: Absolutely.

DR. CAINE: Okay. Part of our problem, and I think
this may be a problem in other places, is that 90 percent of the
clients that we see in our HIV anonymous testing sites are
white. We are not seeing that many blacks in our anonymous
testing sites. And the problem is how to encourage blacks to
come in to seek testing?

DR. Se€rVAAS: When you had Black Expo last summer --
DR. CAINE: Yes.

DR. SerVAAS: <-- you had a lot of blacks lined up at
that Black Expo where you had free testing.

DR. CAINE: Right.
DR. SerVAAS: Why don't you do more of that, out on the
street where you will get the blacks?

DR. CAINE: I think what's happened is that I suspect a
lot of blacks are being seen by their private physicians and
doing their testing instead of going to an anonymous testing
site. I think for something in terms of the discrimination
that's associated with their testing, they're more concerned
about that type of information being available to a local agency
or governmental agency. So, I suspect they're more likely to be
seen by their private physicians.

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