STATEMENT OF
C. EVERETT KOOP, M.D., Sc.D
SURGEON - GENERAL
U.S. PUBLIC HEALTH SERVICE
AND
DEPUTY ASSISTANT SECRETARY FOR HEALTH

DEPARTMENT OF HEALTH AND HUMAN SERVICES
BEFORE THE

COMMITTEE ON EDUCATION AND LABOR
SUBCOMMITTEE ON SELECT EDUCATION

U.S. HOUSE OF REPRESENTATIVES

OCTOBER 22, 1987

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Mr. Chairman and Members of the Subcommittee:

I am Dr. C. Everett Koop, Surgeon General of the U.S. Public
Health Service. I am pleased to be able to be with you today to
testify on the tragic problem of pediatric AIDS. Children are
not only the most defenseless members of our society, they are
also our gift to the future. Every one of us wants to assure
their happy, healthy, and productive lives. Every one of us
wants to solve their problems, or, in a utopia, to be sure they
don't have any problems. Every one of us recognizes that AIDS in
babies, with its devastating medical and social implications,
must be among our highest priorities; it is a problem that must

be met head on and controlled.

AIDS in children was first described in 1982, and significant
numbers of infected infants have been diagnosed by doctors in New
York City, New Jersey, and Miami, Florida. Since that time, the
Department of Health and Human Services has sponsored a number of
local and national meetings on pediatric AIDS, bringing together
Many experts to discuss the disease and to set a course for
dealing with its consequences. Two things these experts agreed
on from the very beginning were that infected infants and
children and their families were subject to discrimination and
were sometimes unable to obtain basic services. Participants
told of a number of early efforts to provide care for these

children and to eliminate,discrimination.
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Since the time of the first identification of pediatric AIDS, 595
cases of AIDS in children under age 13 have been reported to the
Centers for Disease Control (CDC). We are developing an
increasing knowledge base about this disease and about the
numbers and characteristics of the affected children. The number
of cases of children with AIDS has increased steadily over the
last 5 years, but 85% of the cases of pediatric AIDS have been
reported just since 1985. Many believe that the numbers are
underestimated. In fact, doctors who see relatively large
numbers of these patients say that only about one-third to one-
half of the children with human immunodeficiency virus (HIV)
infection meet the CDC definition for AIDS. Essentially, this is
because that definition, and therefore our numbers of pediatric

AIDS cases, do not include children with less severe symptoms.

At first, children with HIV infection were youngsters with
hemophilia, who received the virus through transfusion or
clotting factor before either mode of transmission was safe;
i.e., before 1985. The second wave were children who received
their infection from HIV-positive mothers, either through the
placenta in utero or via the birth canal at the time of delivery.
For 73% of those, the mothers are either IV drug users themselves
or the sexual partners of IV drug users. This, of course, should
come as no surprise, since 67% of all AIDS patients who are
heterosexual are IV drug users or sex partners of IV drug users.

14% of the children with perinatally acquired AIDS were born to
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women who come from areas such as Central Africa and Haiti, where

there is a high level of heterosexual taransmission of AIDS.

For several geographical areas in our country, the problem of
pediatric AIDS is not just an appalling statistic; it is a
fearsome reality that they face on a daily basis. 70% of the
children with perinatally acquired AIDS are from the States of
New York, New Jersey, and Florida. This reflects, of course, the
close link between babies with AIDS and mothers who are
associated with IV drug abuse or who are of Haitian origin. We
do not expect, however, that pediatric AIDS will confine itself
to these three States. The proportion of cases reported from
other States is increasing; and, in general, it is safe to say
that cities with large IV-drug-using populations can expect to

see continuing increases in the number of HIV-infected children.

To prevent HIV infection in babies, we must prevent it in their
mothers. To date, almost 3000 cases of AIDS have been reported
in women. Almost all of these women are of child-bearing age.
Epidemiologists project that the number of cases of AIDS in women

will exceed 20,000 in less than 5 years, by the end of 1991.

Clearly, we must be sure that we are taking steps to prevent
perinatal HIV infection. To achieve that goal, we must prevent
infection among women, andwe must counsel HiIv-infected women

before they become pregnant, about the possibility of giving
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birth to an infected baby. This is an incredibly difficult task.
The fact that women who have already given birth to a baby
infected with the AIDS virus have more children is proof of how
hard it is for people to change their behavior, even when they

are faced with personally tragic consequences.

The Department of Health and Human Services has undertaken a
number of activities designed to understand, deal with, and

prevent pediatric AIDS. I want to tell you about some of them.

At the National Institutes of Health, research is under way to
study the natural history of the disease, rates of perinatal
transmission, and drug treatment for children with AIDS. Of the
newly funded AIDS Clinical Study Groups (supported by the
National Institute of Allergy and Infectious Diseases, NIAID),
several will focus on pediatric populations. Studies with AZT in
children are ongoing in the the NIAID-funded AIDS Treatment
Evaluation Units (ATEUs) and in the National Cancer Institute
intramural research program. The early results are quite

promising: in several children who had either learning problems

or some evidence of neurological impairment because of AIDS, all ;
| a y —> p&

showed improvement after receiving AZT. //’Shortly, several new

studies will be undertaken to look at pregnant women at high risk

of infection, or at women who are infected with the AIDS virus,

to determine the risk of transmission from mothers to infants, to

study the factors influencing the probability of transmission,
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and to try to ascertain when transmission of the virus is most
likely during pregnancy. In addition, there is a new study
planned by NCI and the National Institute of Child Health and
Human Development to determine whether treating infected children
with AZT in combination with gamma globulin will prevent the
complications of HIV infection and perhaps prolong the lives of

children who do become infected.

Recently, CDC awarded funds for several new pediatric projects,
including studies to assess the rates of infection in young
children in three high-prevalence geographical areas. Studies
are also being undertaken to assess rates of infection in
adolescents and to define more clearly high-risk behavior in this
age group. Data from these studies will help us, focus our
prevention efforts. CDC is also launching a nationwide effort to
determine the number of infected persons in the United States.
These studies will be conducted in 30 U.S. cities and will
include surveys of women of child-bearing age and newborns. Data
from this effort will allow us to determine more accurately
future health care and social service needs of children and women

with AIDS.

The Health Resources and Services Administration (HRSA) last year
began support of a program of Service Demonstration Projects,
with funding to projects in’ the cities of Miami, Los Angeles, San

Francisco, and New York. At the end of fiscal year 1987, HRSA
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funded nine more Service Demonstration Projects in other high-
incidence cities. These projects emphasize case management and a
coordinated approach to caregiving, by bringing together local,
State, and Federal resources to assist in health care delivery,
family support, child care, housing, counseling, and referral to
appropriate additional services. What we learn from these
demonstration projects will be very helpful to us in assisting
other States and localities to understand their needs and to
respond to their problems, including the special needs of
children with HIV infection. In addition, HRSA has funded four
Education and Training Centers designed to train primary care
providers, including pediatricians, in the diagnosis, management,
and treatment of HIV infection.

NN ;
The Office of Human Development Services (OHDS) will soon publish
a Coordinated Discretionary Grant announcement asking for
proposals to demonstrate innovative approaches to providing child
welfare services for infants and young children with AIDS. OHDS
has earmarked up to $1.2 million for each of the next three
fiscal years for this activity. Up to six demonstration projects
will be funded to establish child welfare services appropriate
for infants and young children who have tested positive for the
AIDS virus and whose parents are unable to care for them. Both
foster family care and innovative community-based alternatives to
hospitalization would be considered, along with day care, respite

care, and other support services for caregivers. In addition,
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grant recipients would develop educational materials for
families, foster families, and staff of group homes. Those
eligible to receive these awards might include a variety of
public and nonprofit private agencies whose expertise and
experience could be applicable to finding solutions to the
problem of providing foster care and other services to children

with HIV infection.

The Office of the Assistant Secretary for Planning and Evaluation
is currently conducting a short-term exploratory examination of
issues and practices regarding non-medical care for AIDS
children. The purpose of this study is to help understand better
who these infected children are and how they are being cared for.
For example, we want to know how well the match is between the
needs of these children and the services available to them, and
how that is likely to change over time. Staff of the project
will visit the three cities with the highest incidence of
pediatric AIDS and the most experience in dealing with the

problem. A report is expected in February 1988.

In another effort to expand our understanding of the problem, HHS
officials from our regional office in New York met with
individuals representing social service agencies in the States of
New Jersey and New York. These meetings were extremely
productive in terms of helping the Federal government understand

the situation in these two severely affected States, and in
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helping the State representatives recognize what Federal
assistance and resources may be available. New Jersey, for
example, was the first State to develop a Medicaid waiver for
home and community-based services for persons with AIDS or AIDS-
related conditions. Under this waiver, the State can use
Medicaid funds to supplement foster family care rates for AIDS
children. Combining Federal funds with State funds, foster
parents caring for infected children receive between $600 and
$750 per month, as compared with the $400 to $450 generally paid
to foster parents. Although this serves as some incentive, it is
still quite difficult to find foster homes for AIDS children
because of the unique problems associated with the care of these
children, their grim prognosis and almost certain death early in

life, and the fear and stigma associated with this disease.

My heart goes out to the foster mother of an AIDS baby who can no
longer visit with her family because her baby is not welcome in
their homes. This is a problem that cannot be solved by money,
but must be solved through education. People must understand
that AIDS is a disease that is not transmitted by holding a baby
in one's arms, or by kissing a baby. Dr. Windom, the Assistant
Secretary for Health, has a poster hanging in his office that I
wish I could hang on the Committee room wall, and in every
hospital in this country where an infected baby lies, with no

home to go to. It is a chidd's crayon drawing of a small child
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with his arms outstretched, saying, "I have AIDS. Please hug me.

I can't make you sick."

The April 1987 Surgeon General's Workshop on Children with HIV
Infection and Their Families brought together many physicians,
nurses, researchers, hospital administrators, social workers, and
representatives of major professional and voluntary
organizations, together with Federal government representatives,
to discuss what is known about pediatric AIDS and our plans and
hopes for the future. The Report of that workshop, which 1 would
like to submit for the record, has been published and
disseminated widely. It contains recommendations from ten work
groups which focused on a wide variety of topics ranging from
natural history of the infection, treatment, and risk reduction
to educational, family, and financial issues. These
recommendations seem to me to provide a useful framework for
meeting some of the challenges presented by HIV infection in
children. They have received very favorable responses from a
wide variety of public and private agencies and professional

organizations.

I would like to share some of the recommendations with you today,
because I think they illustrate that many who are dealing with
this disease are thinking along the same lines that led you to

draft your legislation.
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For example, the Work Group on a Model for Health Care of
Children with HIV Infection, Including Both In- and Out-Of-

Hospital Care, recommended the following:

o Initiation of efforts to simplify access to existing
health, welfare, social, and financial services for HIV-infected

children and their families;

o Provision of support services so that, to the extent
possible, children can be cared for by their own families and in

their own homes;

o Efforts to broaden the availability of individual foster
care, which is the best alternative to care by the child's own

family;

o For those children for whom family or individual foster
care is not possible, establishment of innovative community-

based care alternatives;

o In those parts of the country with little or no pediatric
AIDS now, immediate initiation of plans for the future by
community, government, and professional leaders in health, public

health, and human services.
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These and other recommendations are being given careful
consideration by me and by others in the Department. You will
notice for example, that the proposal that will be issued soon by
the Office of Human Development Services, which I described

earlier, closely parallels some of the recommendations.

Indeed, they also resemble the proposals in H.R. 3009, the
legislation you are considering today. We favor supporting
projects to demonstrate methods of encouraging families to serve
as foster families for AIDS babies who might otherwise remain
inappropriately in hospitals. Hospitals do not have the
personnel or the resources necessary to provide the enrichment,
love, and attention that all babies need. Even the best equipped
or most financially well-heeled hospital is best, suited for
helping sick babies get better. It is not equipped for raising

children.

We also support the training of foster care personnel and the
provision of respite care. AIDS babies do have special needs,
and their caregivers must understand how to help them. In

addition, we need to offer these caregivers support.

Community-based homes are also important. If such homes were
available, babies could be cared for in an environment more
conducive than a hospital to the daily nurturing attention that

they need. I am convinced that no matter how hard we work, we
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will always have some babies for whom home care in a family
cannot be found. For these children, group homes are an

acceptable alternative.

I recognize that one thrust of the legislation is to draw
attention in a special way to this serious problem, and I
certainly cannot disagree with that goal. At the same time, I
would point out that although we support all of these proposals
in concept, we believe the goals will be accomplished by programs
already under way or planned within the Department. New

legislation is not essential for this purpose.

Finally, we want to call to your attention that our proposal for
grants to carry out much of what is contained in,H.R. 3009
allocates up to $1.2 million per year for the next three years.
We believe that this is a reasonable sum, although it is
substantially less than what is authorized in H.R. 3009.
Clearly, we must all make decisions about where government money
should be spent. This is among the very high-priority areas
within the purview of this Department. Those essential
activities include ennormous efforts in AIDS research, service
demonstration, training, education, risk reduction, and
prevention for which many hundreds of millions of dollars are

being spent.
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In closing, Mr. Chairman, let me thank you again for your
continuing interest in AIDS and your special interest in the
devastating problem of pediatric AIDS. I hope that we can
continue to work closely with the members of the Subcommittee to

challenge this problem and this disease, and to win.

Thank you.