You Too Can Save a Life 

Encouraging Minorities to Become Donors 

By Kauthar B. Umar, MA


Closing the Gap, Working Toward Our Goal • August 2003


S

ince its inception in April 2001, the Gift of Life Donation Initia­ (HRSA). “The largest proportion of patients on the waiting list 

 program (52,000) are waiting for a new kidney. About 38 percent of those are 

ness and African Americans, because they are transplanting at a lower rate.”

antation, However, a shortage of minority donors has made it difficult to 

locate the best matches, and contributes to longer waiting periods 

om needing an organ for transplants for minorities. Tis-

 preventable.” sue types are inherited, much like 

hair or eye color. Matching organs 

between members of the same ethl Schwab, executive director, nic and racial group often enhances 

of Organ Procurement Organizations. successful transplantation. Patients 

are less likely to reject a kidney if an 

t increase individual who is genetically similar donates it. 

crease in 

 for a 14 Barriers to Donation 

ore con­

 toward While African Americans have one of the greatest needs for organ 

and tissue transplantation, they are often reluctant to become donors. 

cause of Dr. Jeffrey Chell of the National Marrow Donor Program (NMDP), a 

al 1,000 nonprofit organization based in Minneapolis, Minn., says that there 

 them,” are barriers to transplantation for the general public, however, when 

minority race becomes a factor, barriers grow even more. “There are a number of 

lives,” he barriers that exist that limit a patient’s access to a transplant. Those 

barriers differ by racial group. Race matters in transplantation,” said 

es, a Fed­ Chell. “The first barrier faced by everyone is having a match and 

yers and having that person available. Next is access to transplantation. There 

e banner, are economic and sometimes geographic barriers. Both are hardest for 

se of the minorities in the U.S.” 

s in what Misinterpretation of the organ donation process and a lack of 

is feature knowledge are additional barriers, according to Chell. Mistrust of the 

ps of all medical system and a fear of not receiving appropriate medical treates. ment are also cited as reasons why many minority families decline 

donation. Religious and cultural beliefs are additional factors, especially the belief that the body must remain intact after death. Asian 

Americans, Native Americans, African Americans, and Hispanics have 

for organ individual cultural and religious beliefs that may deter some families 

d 30,000 from donating. 

ire mary receive Organ Procurement 

g list die 

 matters, HRSA plays an instrumental role in funding and overseeing Fed­

 available eral efforts to improve the national system of procuring, distributing 

tive has proven to be a winner. This five-part national

was developed by the Administration to increase aware

promote donation of organs, marrow, and tissue for transpl

as well as blood donation. Although 

there has been marked improvement in organ donation over the “Dying fr last several years, much more work 

remains to be done. is

Speaking in August 2002 on 

National Minority Donor Aware- Pau

ness Day, Health and Human Ser- Association 

vices (HHS) Secretary Tommy G. 

Thompson said the Gift of Life initiative led to a seven percen

in overall donations over the past year and a 13 percent in

African American donors. Hispanic donations accounted

percent increase. But, according to Secretary Thompson, a m

certed effort remains and these efforts should be directed

minority communities. 

“Because of this marked increase in donors, and be

someone’s selfless act of love and compassion, an addition

people who needed transplants last year [2001] received

Thompson said. “However, we need to continue to reach 

communities with the message that organ donation saves 

added. 

In addition to reaching out to the minority communiti

eral/private partnership was created to help involve emplo

their employees. Under the Gift of Life Donation Initiativ

Secretary Thompson mobilized the resources and experti

Federal government, the private sector, and local communitie

is known as the Workplace Partnership for Life program. Th

involves collaboration with companies and employer grou

sizes to make information on donation available to employe

The Problem 

There are currently more than 80,000 people waiting 

transplantation in the United States, and between 20,000 an

people are diagnosed each year with blood diseases that requ

row donation. According to HHS, about 63 people each da

an organ transplant, but another 16 people on the waitin

because not enough organs are available. Compounding

minorities are disproportionately underrepresented among

donors—making the survival rate for minorities in need of transplants and transplanting organs, tissue, bone marrow, and blood stem cells. 

quite low. President Bush’s fiscal year 2003 budget included nearly $25 million, 

“About 54 percent of those on the waiting list are White, 26 an increase of $5.2 million, for HRSA’s organ procurement and transpercent are African American, 15 percent are Hispanic, and 5 percent plantation efforts. The requested level is targeted to increased efforts 

ourage organ donation and education. 

continued on page 2 >>>> 

are Asian,” said Lynn Wegman, director of transplantation, Health Resources and Services Administration to enc

Office of Minority Health Resource Center 1 U.S. Department of Health and Human Services 
National Marrow Donor Program Registry Growth 

African American 

388,847 

American Indian/Alaska Native 

60,996 

Asian/Pacific Islander 

316,776 

White 

2,563,596 

Hispanic 

415,383 

Multiple Race/Other 

106,784 

Unknown 

1,029,777 As of December 31, 2002, the total number of volunteer 

potential donors was 4,890,973. Chart courtesy of NMDP. 

You Too Can Save a Life 

Encouraging Minorities to Become Donors 

By Kauthar B. Umar, MA


Closing the Gap, Working Toward Our Goal • August 2003


The United Network for Organ Sharing (UNOS) administers the nation’s only 

Organ Procurement and Transplantation 

Network (OPTN). It collects and manages 

data about each transplant event occurring 

in the U.S., facilitates the organ matching 

and placement process, and oversees the national waiting list. In addition, UNOS links 

all transplant centers and organ procurement 

organizations (OPOs). OPOs are responsible 

for approaching families about the option of 

donation when they have lost a loved one. 

OPOs evaluate the medical suitability of potential donors, coordinate the recovery, preservation, and transportation of organs donated for transplantation, and educate the 

public about the critical need for organ donation. 

The LifeCenter Northwest Donor Network of Bellevue, Wash., the largest organ 

procurement organization in the U.S., says 

cross-racial donations can, and do, occur successfully when the matches are available. Genetic makeup is a crucial factor when matching a specific donor and recipients. As a result, an individual of Hispanic decent may 

match better with an organ from another 

Hispanic versus a different racial or ethnic 

group. 

In addition, organ donations can be collected from both the deceased and the living. 

“Last year, there were 6,500 living donors in 

this country. For the first time, the number 

of living organ donors surpassed the number 

of deceased organ donors,” said Wegman. 

“Living organ donors are traditionally relatives or friends of the organ recipient, making the donors more inclined to donate because the recipient is a loved one,” she added. 

Wegman further mentioned that there 

were nearly 6,100 deceased donors in 2002. 

Despite the surprising increase in living donors, the disparities in terms of race and ethnicity were equally as shocking as they were 

for deceased donors. Seventy to 72 percent 

of living donors are White, 12 to 13 percent 

are African American, and another 12 to 13 

percent are Hispanic. 

Increasing Minority Donors 

There are a number of national programs 

nd initiatives created to break down the bariers and make donations easier and more atractive to minorities. NMDP has developed 

 strategic approach to increase the number 

f transplants, improve transplant outcomes 

or patients, and in particular, service the needs 

f minority patients. The initiative addresses 

acial disparities and revolves around recruitent, education, patient advocacy, research, 

nd NMDP organizational diversity. 

In 1993, NMDP developed a series of 

itiatives to address recruitment in minority 

ommunities. Programs like, African Amerians Uniting for Life, Keep the Circle Strong for 

merican Indians and Alaska Natives, Asian 

acific Islander Donors Can Save Lives, and 

ispanics Giving Hope were remarkably sucessful and several components of these iniiatives continue today. 

“Each of these programs was developed 

ith direct involvement and consultation 

rom people in those communities,” said 

MDP’s Isaac Fordjur, legislative represenative. “The programs also included the dea

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velopment of very culturally centered materials that were translated into the proper languages. A team of what we call ethnic marketing associates helps make sure that NMDP 

is addressing the needs of the community in 

terms that the community can appreciate,” 

added Fordjur. 

NMDP has also developed a series of 

recruitment groups that work with NMDP 

donor centers across the country. In these 

groups are individuals who are involved and 

highly visible within their communities and 

work to recruit donors to the registry. Language assistance is available in 26 different 

languages, and written materials are available 

in six languages. 

Projects at Historically Black Colleges and 

Universities (HBCU), in collaboration with 

African American fraternities and sororities, 

have also worked well for NMDP. “The 

Touchdown for Life campaign which is sponsored by 3M Corporation, in partnership with 

our donor centers, recruits about 6,000 donors a year to the registry on HBCU 

campuses,” said Fordjur. The 

Asian Pacific American Medical 

continued on page 3>>>> 

Office of Minority Health Resource Center 2 U.S. Department of Health and Human Services 
You Too Can Save a Life 

Encouraging Minorities to Become Donors 

By Kauthar B. Umar, MA


Closing the Gap, Working Toward Our Goal • August 2003


Student Association recently finished a campaign that recruited approximately 3,500 donors. In addition, Mu Kappa Alpha, a national 

Hispanic fraternity, recruited approximately 3,000 donors in 2002. 

Working with students and universities to address the need for 

donors in minority communities has also proven to be a sound tactic 

for the National Minority Organ Tissue Transplant Education Program (MOTTEP). 

In 1991, Dr. Clive O. Callender, chairman of the Department of 

Surgery at Howard University Hospital, helped develop the first minority-directed dialysis and transplant center, and histocompatibility 

and immunogenetic laboratory in the U.S. He envisioned an organization that would target minorities and educate them on the importance of organ donation while encouraging them to become donors. 

This was done using a grassroots effort—an endeavor that had not 

been used in targeting minorities in the past. Just three years later, the 

official MOTTEP office was opened at Howard University Hospital. 

Today there are 15 additional sites throughout the U.S. and its territories. The efforts of MOTTEP have expanded to other minority 

communities including, Hispanics/Latinos, American Indians/Alaska 

Natives, and Asian Americans/Pacific Islanders. 

As the first program of its kind in the U.S., MOTTEP is designed to educate minority communities on facts about organ and 

tissue transplantation. It empowers minority communities to develop 

transplant education programs that allow them to become involved in 

addressing the shortage of donors. MOTTEP increases minority participation by encouraging and increasing family discussions related to 

organ and tissue donation. 

MOTTEP’s mission recently expanded to include a prevention 

message. It created a new theme to reflect the change, “Love Yourself, 

Take Care of Yourself.” This message is meant to encourage individuals to adopt healthy behaviors, including eating balanced, nutritious 

meals, exercising, and avoiding unhealthy behaviors such as eating a 

diet high in fat and cholesterol, being overweight, and abusing drugs 

and alcohol—behaviors that could lead to the need for a transplant. 

A Look to the Future 

Along with the Gifts of Life Donation Initiative, Secretary Thompson also unveiled a model organ and tissue donor card that incorporates proven elements from existing donor cards. He also commissioned a national medal to honor donors and their families at national 

and regional ceremonies. 

“Dying from needing an organ is preventable,” said Paul Schwab, 

executive director, Association of the Organ Procurement Organizations. 

“The opportunity to save the life of a stranger is a heroic act. 

Sometimes it takes more of a personal sacrifice to get the job done,” 

added SecretaryThompson. 

For more information on organ and marrow donation and Federal 

initiatives, go to http://www.organdonor.gov

For more information on the National Marrow Donor Program, go to 

http://www.nmdp.org

You Too Can Save a Life is based on the Summit workshop


“Organ Donation and Marrow Donation Program—Now More Than Ever”


Office of Minority Health Resource Center 3 U.S. Department of Health and Human Services