Rates of organ donation are especially low among members of minority
communities, and require particular attention. We have well-documented
evidence of the substantially lower rates among Hispanic and black populations
than among white communities. I am pleased to note that an entire session of
this workshop has been devoted to improving rates of donation among minority

communities.

Overcoming the myths and misunderstandings that surround organ transplantation
to increase rates of donation will require the efforts of everyone -- from
Federal, State, and local governments to community leaders, from health
professionals to church organizations.

The Federal Government has a number of initiatives underway to address these
problems, including efforts to help educate the public about the need for
donations and to improve the medical aspects of transplantation.

One of the barriers to donation is the perception of inequality in transplantation.
The report published by the Office of the Inspector General this spring raised the
key issue of disparities among populations. The report indicates that citizens of
the black community wait almost twice as Jong as do people of the white
communities for a kidney transplant -- nearly 14 months compared to only
seven-and-a—-half months, even when controlling for blood type, age, and
locational factors.

While the Report presents a disturbing picture, I'm pleased that we are moving
quickly to put in place its recommendations and to further evaluate the results
of the study. Projects to increase donation among minorities have been given
high priority in my Department.

For example, the Office of the Assistant Secretary for Planning and Evaluation
is overseeing research to evaluate and identify the causes of the disparity in
kidney transplantation among population groups.

Additionally, the National Institutes of Health have numerous clinical trials
underway that will be important in increasing the success of organ transplanta—
tion. For example, the National Institute of Allergy and Infectious Disease is
conducting studies of the immune system, with the goal of helping to control
transplant rejection and increasing the quality of tissue typing.

But we need to do more than study the factors behind the dilemma. Increasing
the rate of organ donation and access to transplantation for members of minority

communities demands our urgent attention.

The Division of Organ Transplantation is devoted to managing the Organ
Procurement and Transplantation Network and Scientific Registry contracts and

26
providing special grants, contracts and educational programs for projects
designed to improve rates of donation among minority groups.

Public education is clearly the critical element. We need to reach people about
the increasing need for organs, but other issues must also be addressed.

As the transplantation field expands with new successes and more people come
to depend on transplants, it is important that organizations for organ donation
maintain high standards of safety. Commissioner David Kessler will spear—-head
a group of representatives of PHS agencies to determine the most effective
strategies to prevent the transmission of lifethreatening infections through organ
transplantation. While we cannot guarantee that it is completely risk-free, the
risks involved in receiving a life-saving organ far, far outweigh the very remote
chance of contracting any infection -- including the AIDS—virus.

Additionally, since 1988, the Health Care Financing Administration has been
certifying organ procurement organizations to assure that they meet certain
qualifying criteria for designation and meet minimum standards of performance.
Such regulation helps to ensure that unnecessary risks are eliminated from
donation procedures.

I am encouraged by evidence that in some areas of the country, donation rates
among minority groups are on the rise. In St. Louis for example, the Mid-
American Transplant Association (a grantee of the Division of Organ Trans-
plantation) reports that donations among blacks rose from 8 percent in 1989 to
16 percent in 1990. The success of the program has been attributed to minority
public education campaigns and to including more minorities in programs
tequesting donations from minority families.

In fact, I am encouraged by the increase in overall organ donation last year -~
a significant move up from previous levels. A great deal of dedication and hard
work have gone into crafting sound legislation and implementing programs
geared towards increasing donations nationwide.

I am especially pleased that Dr. Novello has agreed to lend her support and
direction in the drive to increase organ donation. The recommendations from
this workshop will provide us with a progressive and sound approach for
increasing organ and tissue donation in this country.

Today thousands of Americans are waiting for an organ transplant. Hundreds
of thousands of others could be helped with a tissue or corneal transplant. If this
Waiting list grows as projected, the decisions we face will only get harder, and
the choices before us will become more difficult.

We must work together to increase public awareness and to help those who need
an organ to receive a transplant, and we must strive to make sure that this

27
process is equitable and just. I want to thank each of you for your interest and
input. I am confident that our work together will help more people receive the

gift of life.

Thank you, and Godspeed you in your work.

Wednesday, July 10, 1991

Ms. Braslow: This has been very exciting for all of us who have spent the last
15 months preparing for this workshop. The discussions in the workgroups over
the last 2 days have been extraordinarily exciting and interesting, and I hope we
can collectively capitalize on this enthusiasm and take it back to our respective
places of work.

I want to make a few general comments about the recommendations and
strategies we have received. The first thing I noticed was that there are common
themes. Even though the charges to the groups were often different, some of the
recommendations that came back were very similar.

Several of the recommendations called for creating a task force. If we were to
create all these task forces, we would have no money left to do anything else.
So we will rely on our Advisory Committee to help us address some of the
issues you recommended be addressed by task forces.

Some of the recommended projects can be done through our grant program.
Some can be done through evaluation funds which support research studies.
Some can be done by other Public Health Service offices that may not be
represented here. And some of the projects can be done by you. For example,
if a transplant center or an OPO is interested in taking the lead on a particular
project or recommendation, we would be very interested in hearing about that.
The Public Health Service cannot do everything. We do not have the resources,
and we need your help. This is a community effort, and we want to hear your
ideas on how to accomplish many of these recommendations.

Dr. Novello: We have come to the moment of truth. We have met for 2 days
to come up with recommendations for the future. I would love to work on each
recommendation myself, but the Surgeon General must work on other programs
as well. However, organ donation has personal meaning for me and [ will
definitely keep abreast of the progress made on these recommendations.

As we proceed with the presentation of recommendations if anyone has a

minority opinion, please present it - despite our time constraints. It would be
nice to have a consensus, but we are all human beings with different opinions.

28
However, the more we agree on these recommendations, the better our chances
of successfully implementing them.

Before we begin with the presentations there are two issues I would like to
mention. First, in talking to the public, if I tell them that we have 23,000 people
waiting today for organs, I am sure that will have an impact. But I also need to
inform the public that even greater numbers of Americans are at risk of needing
a transplant in the future. Therefore, I plan to share with them the following
data:

@ more than 13 million Americans have kidney and urologic disease
today.

@ 190,862 Americans were listed in 1989 as having end-stage renal
disease.

58 million Americans have high blood pressure -- 30 percent of all
adults ages 18-74 have high blood pressure; 38 percent of Blacks
compared with 28 percent of Whites suffer from high blood pressure.

122,257 end-stage renal disease patients were on dialysis on 12/31/89
out of a total of 163,069 end-stage renal disease patients at that same
point in time. More than 100,000 end-stage renal disease patients have
high blood pressure; 43,000 have diabetes. Additionally,

@ 16,500 Americas have chronic heart disease;

@ 14,000 Americans have chronic liver disease;

@ 4,500 have chronic heart and lung disease;

@ 4,100 patients have non-functional pancreas; and

@ 3,300 have chronic lung disease.
If I talk about these numbers, the public will realize that while I am worried
about 23,000 today, we must plan for all of these patients who, until we find
better preventive methods, might be added to the transplant waiting list. We
must take responsibility for making the public aware of this situation.
I wish to share one other thing with you. We have been told that sometimes
donor families receive little attention or appreciation for their most altruistic gift.
It was suggested to us that there be a medal or certificate for donor families in
recognition of their gift of life. The Office of the Surgeon General, together with

the Division of Organ Transplantation, designed a certificate of appreciation for
donor families which we would like to distribute through the OPOs. I wanted

29
to tell you about the certificate and show you this slide so you can see what it
might look like. It is a certificate of appreciation from the Surgeon General with
the name of the donor on it, and will include a little note of appreciation. We
would hope to send it in recognition of every donor in the United States
recognizing them for having given the most precious gift -~ the gift of life.

Now we will tum to the presentation of the recommendations.

30
 

 

SURGEON GENERAL'S

“GpeipieateAgpecatin

This certificate is presented to

 

famiy of the late

 

in recognition of their supreme humanitarian spirit in
consenting to give the "Gift of Life” to others.

 

US DEPARTMENT OF HEALTH & HUMAN SERVICES
PUBLIC HEALTH SERVICE

Antonia C. Novello. M.0..M.P.H.
United States Surgeon Genero!

Dote

PHS-T610

 

31

 
WORK GROUP I-A: A NATIONAL CAMPAIGN:
FOCUSING ON THE GENERAL PUBLIC

 

Chairperson: Jeffrey Prottas, PhD
Co-Chairperson: Wanda W. Bond
Background Papers: Elaine Bratic Arkin
John Davis
William DeJong, PhD
Staff Assistant: Emily Haley
Group Members: Charles Atkin, PhD
Charles Brown
Maggie Coolican, RN, MS
Rebecca J. Davis
Frederick N. Griffith
Louise M. Jacobbi, CPTC, CCTC
Rita Guajardo Lepicier
Daniel Maier
Jeanne C. Mowe
Joann Ellison Rodgers, MS
Cynthia Rodriquez—Harriman, LVN
Charles F. Shield, II, MD
Sylvester Sterioff, MD
Moraima Trujillo, MD

INTRODUCTION
The appropriate goal of public education in organ donation is to increase the
number of organ donors. This occurs primarily by increasing the number of

families who say yes when asked to donate.

To achieve this, the goals of public education should be to create a more
favorable predisposition by:

1. Increasing family discussions of the issues.
2. Increasing the signing of organ donor cards.

3. Decreasing misconceptions and fears of the public regarding organ
donation.

33
RECOMMENDATIONS TO INCREASE ORGAN DONATION
THROUGH PUBLIC EDUCATION

I-A.1. The Surgeon General should become the national spokesperson for organ
and tissue donation and transplantation. (short-term)

I-A.2. There should be a consistent, uniform, national theme, nomenclature, and
symbols for the promotion of organ and tissue donation. (short-term)

I-A.3. The Surgeon General should support an independent evaluation and
testing of the AOPO public education campaign. If successful, the campaign
should be endorsed as a national public education campaign. (short-term)

I-A.4. Form a task force of experts including communications specialists fo
review existing public education campaigns and establish criteria for future
donation campaign design and evaluation. (short-term)

I-A.4.Str.1: This task force should develop methods to gather information
about minorities and other target audiences, message content, persuasive
appeals, and communications channels.

I-A.5. Collect and analyze existing and new data regarding why families do or
do not donate and develop strategies to increase donation. (short-term)

I-A.6. Conduct research to identify opportunities for increasing family
discussion. In designing campaigns, attention should be given to the importance
of stimulating family discussion. (short-term)

I-A.7. Develop a national effort to encourage signing and carrying organ donor
cards. (intermediate)

I-A.7.Str.1: Develop a comprehensive long-term plan in cooperation with
organizations not currently involved in the organ and tissue business such as
the National Highway Traffic Safety Administration.

I-A.7.Str.2: Obtain support of the Advertising Council for this campaign.
I-A.8. Obtain and publicize donor card signatures of U.S. Congresspersons,
governors and mayors at annual meetings of appropriate organizations including
the National Governors Association and U.S. Conference of Mayors. Encourage

similar support from local political leaders. (short-term)

I-A.9. Develop methodologies and implement a project to establish standardized
donor information on drivers licenses throughout the United States. (long-term)

34
I-A.10. Create a task force to explore ways of recruiting voluntary health
organizations to disseminate messages to increase organ and tissue donation.
(intermediate)

]-A.11. The Surgeon General should seek support from the business community
to promote organ and tissue donation and transplantation. Equivalent activities
should be encouraged at the State and local levels. (intermediate)

I-A.12. The Surgeon General should seek support from the Business Round
Table to promote organ and tissue donation and transplantation in the work place.
(short-term)

I-A.13. The Surgeon General should approach individual national labor and
union organizations (e.g., AFL-CIO) and ask them to promote organ and tissue
donation among their members. (short-term)

{-A.14. The Surgeon General should seek support from the religious community
through the National Council of Churches and other major religious groups in
order to dispel misconceptions about organ and tissue donation. Equivalent
activities should be encouraged at the State and local levels. (short-term)

I-A.14.Str.1: Encourage leaders of U.S. churches and synagogues to
communicate to their members the churches’ support for organ and tissue
donation.

1-A.15. The Surgeon General should seek support from national fraternities and
sororities throughout the United States. Equivalent activities should be
encouraged at the State and local levels. (intermediate)

I-A.16. The Surgeon General should approach the national PTA regarding
education strategies for regional/local implementation. (intermediate)

I-A.17. Develop and maintain relationships with health educators and develop
strategies to encourage them to educate individuals about organ and tissue

donation. (intermediate)

I-A.18. Develop and maintain relationships with mass media execulives,
journalists, producers, and TV and movie script writers to encourage accurate
programming and articles about organ and tissue donation, including family
discussions of organ and tissue donation. (intermediate)

I-A.18.Str.1: Develop relationships with organizations such as the American
Society of Newspaper Editors and the National Association of Science
Writers and Writers Guild of America. Also encourage science writers’
seminars through the National Institutes of Health and other organizations.

35
I-A.19. Promote the UNOS 1-800-24-DONOR Line as a 24-hour-a~day hot
line with access to bilingual callers. (short-term)
WORK GROUP I-B: A NATIONAL CAMPAIGN:
FOCUSING ON DIVERSE SOCIO-ECONOMIC AND

CULTURAL GROUPS

 

Overall Chairperson:

Chairperson African American Section:
Co-Chairperson:

Chairperson Hispanic Section:
Hispanic Co-Chairperson:

Background Papers:

Staff Assistants:

Group Members:

Oscar Salvatierra, Jr., MD

Will R. Ross, MD

Karen L. Smith, MS

Oscar Salvatierra, Jr., MD
Ashley Baquero, MD

Clive O. Callender, MD

Jorge Chapa, PhD

Larry Wannemacher

Joyce Brown

Veretta Blake

Christopher R. Blagg, MD
Margaret F. Devney, RN, MSN
Eunice Diaz, MS, MPH

Luz Diaz-Schreiber, BS, MA
Steven D. Helgerson, MD, MPH
Octavia Hudson, PhD

J. Raul Magana, PhD

Rudolph C. Morgan

Raymond Pollak, MD, FRCS, FACS
Anita L. Principe, BSN, MPA
Cozette Proctor

Emesto Rive-Mora, MD
Maritza R. Sanchez

Eduardo A. Santiago-Delpin, MD
Mark E. Whitlock, MS

INTRODUCTION

The Surgeon General should be highly commended for facilitating the first forum
to allow minorities to present their problems regarding organ donation and to
Suggest solutions to their problems in a unified way.

The charge to the group for "A National Campaign Focusing on Minorities" has
been to make recommendations to increase donations amongst diverse socio—
economic and/or cultural groups within the U.S. population. Two groups were
to serve as models: African~Americans and Hispanics. Discussion of Native
Americans was also included in this group's deliberations. Asians and Pacific
Islanders are another important minority which should be involved in future

forums.

37
The entire work group met to discuss issues that cut across different minority
populations. The members then divided into two sections, one focusing on
Hispanics and the other on African Americans, in order to address issues that are
specific to these two populations. The group members Tepresenting Native
Americans participated in the Hispanic section. The following preamble and
recommendations focus on minorities as a whole. This is followed by
recommendations and strategies for African Americans and Hispanics with a few
comments focused specifically on Native Americans.

OVERALL PREAMBLE AND RECOMMENDATIONS

There are some well recognized considerations that cut across the three minority
groups discussed at this forum (African Americans, Hispanics, and Native
Americans). These commonalities are: 1) each minority group represents a
different and distinct culture; 2) the amount of poverty in each group is greater
than that for the general U.S. population; 3) the education level in each group is
less than that of the general U.S. population; 4) the overall health status of each
group is lower than that of the general population; 5) the mean age in each group
is significantly less than the White population. The fifth issue has particular
importance as we embark on campaigns to increase organ donation in minority

groups.

RECOMMENDATIONS

I-B.1. Current Federal funding for organ/tissue donation education for minorities
is inadequate and should be allocated at an amount not less than $10 million a
year for S years. .

I-B.2. The funds identified in I-B.1. should be used to improve organ donation
and to study all aspects of ESRD in all minorities.

I-B.3. The funds identified in I-B.1. should be used for African Ameri-
cans/Blacks, Latinos/Hispanics and Native Americans as outlined in the
subsequent recommendations and for other minority groups which were not
addressed specifically during this workshop, such as Asians/Pacific Islanders.

I-B.4. The development of a minority coalition is absolutely necessary to allow
minorities to address their concerns related to organ/tissue donation and
transplantation. There should be adequate funding to enable this dialogue to
continue on an on-going basis and to allow minorities to frame and implement
solutions to their own problems, emphasizing interventions at the community and
"grass roots" levels.

38
I-B.5. A national minority organ/tissue transplant educational program
(MOTTEP) should be supported and funded at a level commensurate with the
successful pursuit of its goal of increasing organ/tissue donation and transplanta-
tion among all minorities.

AFRICAN AMERICANS
Preamble

It should be the right of every American citizen to have equal access to the
benefits of modern science and medicine. In the field of organ transplantation,
discrepancies have been cited in the procurement and dispensation of donated
organs. Specifically, African-Americans are less likely than whites to have
undergone kidney transplantation and are over-represented on transplant waiting
lists. Potential explanations for such disparities include: 1) limited fund of
knowledge of the benefits of organ transplantation, due mostly to reduced access
to medical care; 2) decreased rate of organ donation, and 3) institutional bias.
These and other barriers to organ transplantation in African-Americans can be
overcome by implementing a broad-based educational program utilizing mass
media as well as community grass roots organizations.

Comprehensive educational efforts should proceed with the firm support of
policy-makers and appropriations committees at the Federal, State, and local
levels. Programs should have a precise target population, well-defined goals and
tracking measures, and should be under the scrutiny of a central coordinating
group. The overall, long-term goal of the educational campaign is to positively
influence the attitudes and behavior of the target group towards acceptance of
organ donation as an unselfish, "right" thing to do. The hallmark of the
campaign in the African-American community, or with any ethnic minority, is
the use of culturally sensitive instructional tools and emphasis on volunteerism.
Based on these premises, the following recommendations are offered.

RECOMMENDATIONS

I. PROBLEM IDENTIFICATION

I-B.6. Allocate funds, no less than $5 million per year, for an in-depth analysis
of medical and socio-economic factors that contribute to a low rate of organ
donation and transplantation among African Americans.

I-B.6.Str.1: Develop and convene a minority coalition encompassing the
previously identified ethnic groups (African Americans/Blacks, Latinos-
Hispanics, American Indians, and Pacific Island/Asian) to guide public
education efforts targeted at these populations.

39
I-B.6.Str.2: Using extensive surveys and questionnaires, conduct large
multi-center comparative studies of attitudes of all cultures toward organ and
tissue donation. ,

I-B.7. Allocate funds for the development of a national campaign geared at
increasing the rate of African American organ and tissue donors. This funding
should be commensurate with the disproportionate degree of ESRD in African

Americans.

I-B.7.Str.1: Examine replication of MOTTEP at regional and local levels.

I-B.7.Str.2: Conduct a mass media communication campaign aimed at
minorities.

I-B.8. Funding should be made available for scientific projects that help
determine the role of MHC tissue antigens and ABO blood types in graft survival
and how immunogenetics impact upon graft allocations.

I-B.8.Str.1: Clarify indeterminate antigens in African Americans and
examine their impact on allocation of organs.

I-B.8.Str.2: Identify specific HLA-A, B and DR antigens and subtypes and
their correlation with graft survival.

I-B.9. Funding should be made available for exhaustive studies on why African
Americans are disproportionately afflicted with kidney disease and other
end-stage organ disease.

II. PUBLIC AND PROFESSIONAL EDUCATION

I-B.10. Public and professional education initiatives should incorporate the
organized use of culturally sensitive instructional tools to increase the awareness
of organ donation in the targeted populations.

I-B.10.Str.1: Mass media campaigns should be conducted which use clearly
identifiable, positive, ethnic role models, including children. Information
Should be targeted to and appropriate for use at the community "grass roots"
level.

I-B.10.Str.2: Convene a consensus conference of minority and majority
participants to discuss utilization of minority requestors.

I-B.10.Str.3: Expand and replicate existing effective minority-focused
donation education programs, such as those developed by the St. Louis OPO,

the Howard University Program, and the Houston OPO.

40
I-B.10.Str.4: Develop proposed curricula for institutions of higher education
which encompass donation and transplantation information. Disseminate
curricula to all institutions of higher education, with a special emphasis on
historically Black colleges and universities.

I-B.10.Str.5: Use Black History Month to emphasize dona-
tion/transplantation and the contributions of the African American community
to the field of organ transplantation.

I-B.10.Str.6: Use culturally sensitive and ethnically similar speakers (donor
families, recipients, clergy, etc.) to address religious concerns of minority
populations.

I-B.11. Encourage medical and nursing schools to provide transcultural
curriculum that sensitizes students to issues in organ donation specific to African
Americans.

I-B.12. Private sector sponsorship of donor and transplant awareness programs
should be aggressively pursued at Federal, State, and local levels.

I-B.13. African American organ donors (cadaveric/living) and recipients should
participate in public education efforts and provide personal accounts of their
transplant experiences to overcome major obstacles of apathy and fears that
inhibit donation.

Ill. LEGISLATIVE INITIATIVES

I-B.14. This work group firmly opposes the use of any financial incentives for
organ donation. However, medical expenses for living related donors should be
subsidized.

I-B.14.Str.1: Funding should be made available for a recuperation period
and hidden costs associated with live donation. Such costs might accrue
from:

a. child care
b. surgery-related medical expenses
c. expanded period of disability and loss of work

I~B.15. Burial expenses for all cadaver organ donors should be made available.
I-B.15.Str.1: OPOs should contribute a set amount of monies to a general

fund managed by a non-profit independent organization to which any donor
family can. apply.

41
I-B.16. States should incorporate questions on organ donation in their respective
drivers manuals and examinations.

IV. ADDRESSING INSTITUTIONAL BARRIERS WITHIN ORGANIZA-
TIONS SUCH AS HOSPITALS, OPOs, AND TRANSPLANT CENTERS

I-B.17. Transplant centers and OPOs must recruit culturally sensitive and
ethnically similar staff.

I-B.17.Str.1: National transplant organizations (ASTS, ASTP, NATCO,
AOPO) should encourage the education and training of minority profes-
sionals.

I-B.17.Str.2: Transplant centers, OPOs and hospitals should hire culturally
sensitive and ethnically similar transplant coordinators and other personnel
to enhance transplantation and donation among minorities.

I-B.18. Culturally sensitive and ethnically similar personnel must be recruited
at all levels of transplant policy-making and implementation.

I-B.19. The Surgeon General must continue to address the presence of
institutional barriers to organ transplantation for African Americans and should
be commended for her current efforts.

HISPANICS
Preamble

Hispanics are one of the largest and fastest growing minority groups in the U.S.
They comprise 9 percent of the Nation's total population and grew by 53 percent
between 1980 and 1990. Hispanics are an aggregation of different national
origin subgroups (primarily Mexicans, Puerto Ricans, and Cubans) with different
geographic distributions. A few States and several cities contain the majority of
the U.S. Hispanic population. Although Hispanics share a common language,
they are acutely aware of the country of origin and of historic and ethnic
differences among these subgroups.

The Hispanic population is concentrated primarily in five States: California,
Texas, Florida, New York, and Illinois. In California, Hispanics make up one-
fourth of the State's 30 million population, and are projected to exceed Whites
in numbers by the year 2030.

The major health problem facing Hispanics is that they have much less access
to health care providers and institutions than any other group in the United

42
States. Factors which limit access include lower rates of insurance coverage
(private or public), lower income levels, language differences, and scarcity of
Hispanic health providers. Uninsured rates are:

37 percent of Mexican Americans

20 percent of Cuban Americans

15 percent of Puerto Ricans compared to 10 percent of the non-Hispanic
White population

Another major problem is that there are less national data available about the
health status of Hispanics than for any other ethnic group. For example, the
incidence of ESRD in the general Hispanic population or any Hispanic subgroup
is essentially unknown.

Although studies exist on the demography and epidemiology of renal disease in
the country or area of origin of the sub-groups (which can serve as comparative
databases) only a few local U.S. studies address these issues in Hispanic
populations. At best, therefore, one can only estimate the incidence of disease
in the U.S. Hispanic population. The best study appears to be the San Antonio
study where Mexican Americans were found to have an incidence of ESRD three
times that of non-Hispanic Whites.

Other San Antonio data are also important for transplantation: 52 percent of the
population are Hispanic, 80 percent of organ recipients are Hispanic, but
Hispanics account for only 14 percent of organ donors. In general, cadaveric
donation in Latin America follows a similar patter with 64 percent of
transplants being performed from live related donors as an overall average.

In the U.S., a number of additional factors have been identified as affecting
organ donation. Sometimes decisions are made by a group, sometimes by the
elders, sometimes by prominent members who are respected by the family, and
frequently these do not coincide with the next—of-kin. Also, discussions are
very lengthy, and family members frequently wait for calls or visits from
members living far away. This "extended family" affects the request and
donation process, especially with its time constraints.

Secondly, the emotional reaction of the family upon the news of death is often
overtly expressed, frequently as uncontrolled anguish, many times to the point
of a contagious form of hysterics. During this time, communication with the
family is almost impossible.

Other factors affecting the donation rate of Hispanics relate to the small number
of Hispanic coordinators/requestors with the necessary cultural awareness and
Sensitivity to communicate effectively with this population. Language is an
important barrier as well. Ignorance of the donation process, of Hispanic disease
Statistics, and of the need for donation may result in a climate of distrust of the

43
health care system, creating an additional barrier to donation. Most studies do
not signal religion as a major disincentive or barrier to donation or transplanta—
tion for Hispanics, but a significant minority do regard organ donation as against

their religion.

RECOMMENDATIONS

Immediate Action

I-B.20. Identify principal decision-makers and next-of-kin upon the potential
donor's admission to the hospital.

I-B.20.Str.1: Develop education document for transplant community: "What
Works for Hispanic Organ Donation." (Identify barriers and suggest how to
overcome them).

I-B.20.Str.2: Establish culturally sensitive hospital-based resource teams
with a focus on minority needs and issues.

I-B.20.Str.3: AHA and State hospital associations shall establish
guidelines for identifying decisionmakers and next-of-kin.

I-B.21. Establish awareness and understanding by requestors of the role of the
extended family in Hispanic populations, their emotional reaction to death, and
the grieving process.

[~B.21.Str.1: Establish culturally sensitive hospital-based resource teams
with a focus on minority needs and issues.

I-B.22. Make educators, counselors, and requestors aware of the importance of
cultural and sub-group differences.

[-B.22.Str.1: Develop education document for transplant community:
“What Works for Hispanic Organ Donation." (Focus on barriers and how to
overcome them).

[-B.22.Str.2: Establish culturally sensitive hospital-based resource teams
with a focus on minority needs and issues.

I~B.22.Str.3: Provide education and scholarship funds for Hispanics to work
in the organ donation field.

[-B.23. Increase the number of trained Hispanic requestors.
[-B.23.Str.1: Develop education document for transplant community: "What
Works for Hispanic Organ Donation." (Focus on barriers and how to
overcome them).

I-B.23.Str.2: Establish culturally sensitive hospital-based resource teams
with a focus on minority needs and issues.

I-B.23.Str.3: OPOs serving large Hispanic populations shall hire and train
Hispanic requesters.

I-B.24. Increase the participation of Hispanic donor families, live donors, and
recipients and their families in the public education and donation process.

I-B.24.Str.1: Establish culturally sensitive hospital-based resource teams
with a focus on minority needs and issues.

[-B.24.Str.2: The Surgeon General shall plan, direct, and fund a national
campaign on organ donation using national Spanish speaking media.

I-B.25. Use bilingual consent forms and donor cards.

I-B.25.Str.1: Establish culturally sensitive hospital-based resource teams
with a focus on minority needs and issues.

- [-B.25.Str.2: OPOs with large Hispanic populations shall assure that
bilingual consent forms and donor cards are used.

I-B.25.Str.3: Federal documents on organ donation shall be bilingual.

I-B.26. Train and encourage Hispanic physicians to participate in public and
professional education related to organ donation and transplantation.

1-B.26.Str.1: Establish culturally sensitive hospital-based resource teams
with a focus on minority needs and issues.

I-B.26.Str.2: Use teleconferencing to target large populations for education
and discussion.

I-B.27. Increase the participation of Hispanic clergy in donation education
activities.

]-B.27.Str.1: Establish culturally sensitive hospital-based resource teams
with a focus on minority needs and issues.

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I-B.27.Str.2: Establish in schools of medicine, allied health, and theology
curriculum on organ donation and transplantation with an emphasis on

minority communities.

I-B.27.Str.3: Use teleconferencing to target populations for education and
discussion.

[-B.28. Encourage intra-family discussion of the donation process.

I-B.28.Str.1: Send information to households of card signatories (e.g.,
Motrain).

I-B.28.Str.2: Develop education document for transplant community:
"What Works for Hispanic Organ Donation." (Focus on barriers and suggest
how to overcome them).

I-B.28.Str.3: Establish culturally sensitive hospital-based resource teams
with a focus on minority needs and issues.

I-B.29. Eliminate use of the term “brain death.” Use "death" only.

I-B.29.Str.1: Establish culturally sensitive hospital-based resource teams
with a focus on minority needs and issues.

I-B.29.Str.2: The Surgeon General shall communicate to neurological
specialists and other appropriate physicians the need for timely declaration

of death.

I-B.30. Present a simple, direct message of the need for and benefits to
Hispanics to consent to organ donation.

I-B.30.Str.1: Conduct ongoing basic evaluation research on all education
materials for the Hispanic community.

[-B.30.Str.2: Translate and disseminate the Pope's message on organ
donation and encourage similar messages from other religious leaders.

Intermediate Action

I-B.31. Identify effective mechanisms and methods of communicating the
subject of organ donation to the Hispanic population.

I-B.31.Str.1: OPOs shall actively recruit and encourage participation of
Hispanic clergy, organ donors, recipients and their families in education

about donation.

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I~B.31.Str.2: Federal documents on organ donation shall be bilingual.

I-B.31.Str.3: Develop slide or video presentation in Spanish for use in
public education initiatives targeted at Hispanics.

I-B.31.Str.4: Include bilingual information on organ donation in States’
departments of motor vehicles, IRS, and Social Security documents.

I-B.31.Str.5: OPQs shall develop and distribute during Hispanic Heritage
Week an information packet in Spanish on organ donation and transplanta—
tion.

I-B.32. Educate the public and professionals about the different roles of health
care professionals in the donation process.

I-B.32.Str.1: Establish in schools of medicine, allied health, and theology
curriculum on organ donation and transplantation with an emphasis on
minority communities.

I-B.33. Reduce delays in declaration of death.
I-B.33.Str.1: Establish hospital-based resource teams.
Legislative Action
B34, Determine demographic and epidemiological characteristics of Hispanic
populations and sub-groups including genetic studies. Target studies to ESRD

networks and OPOs serving large Hispanic populations in the United States.

I-B.34.Str.1: DHHS shall develop an RFC to establish a database on
epidemiological parameters of the U.S. Hispanic population.

I-B.35. Improve access of Hispanics to the health care system, especially the
medically and socially indigent.

I-B.35.Str.1: The minority coalition should develop a strategy to address
this issue.

I-B.36 Provide financial assistance for health care and child care during
rehabilitation of living organ donors.

I-B.36.Str.1: The minority coalition should develop a strategy to address
this issue. ©

I-B.37. Investigate minimizing or eliminating burial costs to donor families.

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I-B.37.Str.1: The Surgeon General shall encourage the identification of
groups or panels of funeral homes who donate burial or provide burial at

lower costs.

AMERICAN INDIAN/ALASKAN NATIVE (AV/AN)

In discussing means to increase organ donation in various socio-economic and/or
cultural groups, there are two key issues which are important for American
Indian/Alaska Native (AI/AN) populations in the U.S.: diversity and data.

1. Diversity:

In the 1990 census approximately 2 million persons identified themselves
as American Indian/Alaska Native. These people comprise a very
diverse group. There are more than 400 Federally recognized tribes and
nations in the U.S., each tribe/nation representing a distinct cultural
entity. While many people think of American Indian/Alaska Natives as
living in rural reservations, more than half now live in urban (or near-

urban) areas.

2. Need for more accurate data:

Too little is known about the characteristics of AI/AN with regard to
awareness and attitudes related to organ donation, organ donor rates,
reasons why AI/AN people do not donate organs, and accurate measures
of need for organ transplantation. Similarly, too little is known about
health care providers’ attitudes and understanding of AI/AN individuals
with whom they work.

RECOMMENDATIONS

I-B.38. The following organizations and groups should collaborate immediately
to determine key organ donation and transplantation characteristics of AI/AN
tribes and nations from all regions of the U.S.: AI/AN tribal leaders, the Indian
Health Service, USRDS, OPOs, UNOS, HCFA, and HRSA.

I-B.38.Str.1: Develop an information base on American Indians/Alaskan
Natives.

A. Describe awareness and attitudes related to organ donation issues for
AI/AN groups in at least six regions of the U.S.

B. Describe and publish accurate information related to AI/AN pop-
ulations on the following issues:

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1. prevalence of diseases that result in end-stage organ failure
2. transplantation rates for these diseases
3. organ donation rates

I-B.38.Str.2: Conduct a workshop on the need for, current status of, and
ways to increase organ donation in AI/AN. This workshop shall be
organized by the DOT/HRSA and IHS. Participants at the workshop shall
include at least the following: leaders of AI/AN tribes and nations; leaders
of AIAN urban clinics; health care workers who serve AI/AN people; and
selected experts from the field of organ procurement, transplantation,
education, and public relations.

OBSERVATION

Virtually all of the recommendations and action steps developed in this work
group for Hispanics are pertinent to understanding organ donation in AI/AN.
While it is likely that many AI/AN leaders would concur with these recommen-
dations it is not possible to speak on behalf of all AI/AN. Recognizing the
diverse cultural backgrounds and sensitivities of AI/AN is of paramount
importance to improving the health of these people.

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