It's been 22 years since Diane Royster underwent a liver transplant.
In the years since, Royster worked 14 years as a food manager at Western Psychiatric Hospital before retiring in 2003. Vibrant and extroverted at 72, Royster likes to talk -- pretty much any time she is asked -- about the need for better awareness in minority communities of transplants and organ donations.
Minorities make up about half of all people on transplant waiting lists, according to National Minority Organ and Tissue Transplant Education Program, a Washington-based education and advocacy group. Yet the program estimates that minorities account for only 25 percent of all organ donors, which reduces the likelihood of a match.
"In minority communities, there is a high risk of diabetes, hypertension and certain genetic disorders that often cause people to need transplants. But there is strong resistance to being an organ donor -- for a number of reasons," said Lisa Upsher, program director of the Center for Organ Recovery and Education, or CORE, which will sponsor a conference on Sept. 15 about minority transplants.
The 2nd Annual Kountz/Callender Rappaport Transplant Symposium, "Transplantation Disparities: Current Trends and Future Prospects," will be held at the University of Pittsburgh.
CORE is one of 58 regional not-for-profit organ procurement organizations in the United States and serves Western Pennsylvania and parts of New York and West Virginia.
The conference's speakers include health care professionals along with Royster and other transplant recipients. They will look at the high number of minorities in need of transplants and the relatively low number of minority organ donors.
For decades, Royster has tasked herself with persuading people to consider being organ donors. It's an uphill battle, she says.
"Unless this hits at home, people just don't want to be bothered with even thinking about it. I was recently at a health fair at the Hill House, and people did not want to even come near my table," Royster said.
Younger people, she said, are more open to the idea of organ donation. "People who are older, who grew up before transplants, think that transplants are creepy and don't want to talk about them -- they don't want to talk about transplants until they need one."
According to the National Minority Organ and Tissue Transplant Education Program, obstacles to recruiting minority organ donors include a lack of community awareness about renal disease and transplantation, religious beliefs or superstitions.
There is also fear that by signing an organ donor card, medical personnel would not work as hard to save them and a feeling that their organs would only go to whites.
"That is the biggest myth -- many people really think that health care providers do not work hard to save you if you are an organ donor. It's not true in any way," said Upsher of CORE.
Reluctance to donate organs reflects the black community's fraught history with the medical profession, said Angela Ford, executive director of the University of Pittsburgh's Center For Minority Health.
"This has a lot to do with mistrust of the heath care system in the African American community," Ford said.
That mistrust has deep roots, and probably nothing dismantled confidence in health care more than the infamous Tuskegee syphilis experiment, she said.
Between 1932 and 1972 in Tuskegee, Ala., the U.S. Public Health Service studied the natural progression of untreated syphilis in poor, rural black men who thought they were receiving free health care from the federal government.
"That study, even four decades later, has done a lot to undermine medicine. It also still really hurts the ability to recruit African Americans into any medical research project," Ford said.
The mistrust has likely been reinforced by details emerging in the past year about 1940s Guatemala syphilis trials, where U.S. researchers infected soldiers, prisoners, prostitutes and the mentally ill with potentially lethal sexually transmitted diseases.
The late Dr. John C. Cutler, a University of Pittsburgh professor, directed the Guatemalan project and was involved in the Tuskegee project.
Last week, a presidential commission found the 1940s U.S. Public Health Service study led by a University of Pittsburgh researcher to be "an unethical historical injustice."
More than 83,000 people are on the national transplant waiting list, and 16 people die each day waiting for a life-saving organ transplant, according to the National Minority Organ and Tissue Transplant Education Program.
Photo: Diane Royster, 72, received a liver transplant in 1989. She says many people are apathetic about the need to sign up as potential organ donors until the issue hits close to home.
Andrew Russell | Pittsburgh Tribune-Review
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