Minniefield Works To Increase Awareness Of Organ Donation In Minority Communities

BUFFALO, N.Y. -- William Minniefield's determination to convince the African-American community that organ donation is a good and necessary thing has resulted in a major grant award to the University at Buffalo and the regional transplant agency to accomplish that goal.

The award -- a total of $810,000 over three years -- was based largely on research Minniefield conducted for an individualized degree program in minority health issues he is pursuing through UB's Millard Fillmore College.

But to refer to Minniefield simply as a non-traditional student is understating the case.

Quitting work and enrolling full-time at UB, he earned bachelor of arts degrees in both psychology and interdisciplinary health sciences in May 1998. He then applied for admission into the master's program in epidemiology in the Department of Social and Preventive Medicine. While waiting for acceptance, he began his research in minority health issues, which, in addition to forming the basis for a major grant award, will result in a third bachelor's degree in December.

For Minniefield, the problem of low organ-donation rates by the African-American community is personal and tragic. His younger brother died of kidney disease at the age of 40 while waiting for a transplant. That experience was a wake-up call to his extended family. When his niece, born with cancerous tumors on both kidneys, died at the age of four, her family donated her corneas to help two other children.

With these experiences in his family history, Minniefield's choice of a research project to complete a bachelor's degree in minority health issues was clear: He would try to find out why nationally only 14 percent of African Americans are organ donors, although they need 30-35 percent of the organs donated. The donation rate by whites is close to 76 percent.

To try to find out why this situation exists, Minniefield developed a 12-question survey designed to assess attitudes toward organ and body donation among African Americans, other minorities and whites. Family members living in Buffalo, Atlanta, Jacksonville, Tampa, Detroit and Hobart, Ind., helped distribute 1,000 of the questionnaires.

Preliminary results from the survey revealed a number of cultural attitudes held by African Americans that present barriers to organ donation.

"Religious reasons" ranked first on the list of "Reasons for Not Donating," Minniefield noted. Anticipating this response, he has armed himself with a list of religions and denominations -- from evangelical Christian to Hinduism -- and their public stance on organ donation, all of which support it as an act of charity. "Family reasons" ranked second.

Perhaps the most difficult issues to overcome relate to the African-American community's historic mistrust of the medical system, based in large part on the Tuskeegee incident, Minniefield said. The Tuskeegee experiment involved withholding treatment to a group of black men with syphilis from 1932-72 to study the long-term effects of the disease. President Clinton recently apologized publicly to survivors of that incident.

This strong mistrust of doctors and the medical system surfaced in responses such as:

• "Fear bodies will be used for crazy experiments"

• "Fear organs wouldn't go to the people who need them"

• "Afraid organs will be taken before they are dead"

• "Afraid the patient won't get the necessary medical attention if the family agrees to organ donation"

While gathering data for this research, Minniefield got involved with Upstate New York Transplant Services (UNYTS) and the local chapter of the National Kidney Foundation, which promptly named him to its board of directors. He began working with that group on culturally sensitive approaches for use in minority communities to increase organ donation.

When the request for proposals came from the National Organ and Tissue Donation Initiative to transplant agencies across the country for projects to test new ways of increasing organ donation, UNYTS called Minniefield and suggested he get involved.

He did, and the winning proposals were announced Sept. 24 by Vice President Al Gore, who had sponsored the initiative.

Minniefield isn't listed as a co-investigator on the grant, but it is based on his research and he will be involved as a consultant.

"These are barriers white Americans aren't going to be able to break down," he said of his study findings. "I've learned from experience that when you have minority research, it is essential to have minorities in key positions. The African-American community needs to be reassured that there is protection for their interests."

Meanwhile, Minniefield's research is gaining wider attention locally and regionally. He has received a $5,000 grant from the local chapter of the National Kidney Foundation to develop culturally sensitive educational materials. And he was invited to Syracuse by the End-Stage Renal Disease Network of New York to present his study findings and discuss educational approaches.