Contacts:
Sarah Goodwin
Kathi Ovnic
Holly Korschun

July 25, 1998

INCREASING ORGAN DONATION AMONG AFRICAN-AMERICANS: Statewide Commission Established to Meet the Challenge

For the past two years, organ donation among African Americans in Georgia has declined, yet morethan half of the nearly 900 Georgians awaiting lifesaving organ transplants are African-American. Nationwide, fewer than 12 percent of organ donors are African-American.

The Carlos and Marguerite Mason Trust has awarded a grant to Emory University intended to assess and address this disparity.

With Mason Trust support, the Institute for Minority Health Research at Emory's Rollins School of Public Health has partnered with the Emory University Hospital Center for Transplantation to spearhead establishment of the Georgia Leadership Commission on Organ, Tissue, Blood and Marrow Donation Among African Americans.

The Commission is comprised of 21 opinion leaders from across the state, including representatives from the African-American faith community, public health practitioners and transplant recipients.

According to project Co-Investigator Jennie Perryman, R.N., M.S.N., director of the Center for Transplantation, the commission will provide a public forum for addressing a broad range of issues that influence participation in donation programs. Public hearings will be held in Georgia to gather testimony from health care providers, opinion leaders and patients to determine issues and challenges to African-American organ and tissue donation. Commissioners will listen to testimony presented at the hearings, evaluate the information and make recommendations for strategies to increase the number of African-American donors.

"The commission is being formed to find a solution to a major public health problem affecting African Americans in Georgia," says Stephen B. Thomas, Ph.D., project co-investigator and associate professor at the Rollins School of Public Health of Emory University. "Far too many African Americans refuse to sign donor cards because of concern about how organs are allocated, religious beliefs and lack of trust in the medical research establishment," says Dr. Thomas, who also is director of the Institute for Minority Health Research at the school. "The behavior of physicians must also be examined to determine the extent to which African Americans are -- or are not -- being offered transplants that can prolong and improve quality of life."

Increasing the organ donation rate for both live and cadaveric black donors is the most direct and cost-effective approach to reducing waiting times for the majority of transplant candidates in Georgia, Ms. Perryman says. "This approach will increase the number of donors with ABO blood groups and tissue-typing antigens -- biological factors predominant in the African-American population."

Human biology also dictates why increasing African-American blood donors will contribute to increased organ transplants, Ms. Perryman says. Blood used for the blood transfusions required during organ transplant surgeries often comes from national blood banks -- whose blood donors are mostly white. Since African Americans are sensitized to tissue-typing antigens more frequently than whites, their bodies are often less receptive to banked blood -- and they tend to wait on transplant lists longer just waiting for compatible blood.

"Increasing the number of blood donations from African-Americans could potentially decrease the number of black persons on organ transplant waiting lists," Ms. Perryman says.

Breakthroughs at medical centers -- including Emory's -- in treating sickle cell anemia with bone marrow transplantation have further increased the need for increasing organ, tissue, blood and marrow donations among African Americans.

Sickle cell anemia is a hereditary blood disease predominant among African Americans that causes enormous pain and even premature death to black children and young adults.

"Unfortunately, advancements in transplantation to treat sickle cell anemia and kidney disease -- which disproportionately affect African-Americans -- and many other life-threatening conditions are being thwarted by the donor shortage problem," Dr. Thomas says. "This problem was brought into the homes of Georgians through national news coverage of Michelle, the 18-year-old daughter of baseball Hall-of-Famer Rod Carew, who died of leukemia due to lack of a compatible donor for a bone marrow transplant. For the first time in recent memory, millions of people saw a black man in the media spotlight call, unsuccessfully, to African Americans to donate bone marrow. Every year, far too many African Americans suffer the same situation with far less publicity -- but the call is no less urgent.

"The donor shortage problem in Georgia is a problem with a solution.

With the community talent harnessed by the Georgia Leadership Commission on Organ, Tissue, Blood and Marrow Donation Among African Americans, the means is now available to address this problem."

The Carlos and Marguerite Mason Trust is a philanthropic organization based in Atlanta that offers invaluable support to patients awaiting organ, tissue, blood and marrow transplantation, to their families -- and to the medical professionals treating them and researchers attempting to improve transplant effectiveness. So that families of patients undergoing treatment at any of the city's transplant centers (Emory, Egleston Children's Hopsital, Piedmont Hospital or

St. Joseph's Hospital) may be close to their loved ones, the Mason Trust supported creation of Mason Guest House. The bed and breakfast-style house provides comfortable and affordable lodging to family members. This is but one example of the type of support given by the Mason Trust.

The Commission joins The Georgia Coalition on Donation, the Minority Organ/Tissue Transplant Education Program (MOTTEP) and LifeLink of Georgia's Minority Donation Education program (MDEP) in working to increase awareness of the need for organ donation among African Americans.

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