Despite decades of campaigns to increase organ donation by ethnic and racial minorities, nonwhite patients still make up a disproportionately high percentage of people waiting for organ transplants and a disproportionately low percentage of those who receive them.

National Minority Donor Awareness Day, recognized Sunday, comes once a year. But for Diane Royster, 71, of Garfield, the push to educate minority communities about organ donation is constant.

"If somebody hadn't said yes to organ donation I wouldn't be here today," said Ms. Royster, who received a liver transplant in 1989. "It's just been a learning experience for me."

Today, Ms. Royster is a member of a multicultural task force at the Center for Organ Recovery and Education, which hosted a gospel fest Saturday at the August Wilson Center for African American Culture, drawing about 400 people. Many signed up as donors, leaving their tissue and organs to others after their death.

Ms. Royster, who is black, passes out information at community days, speaks to crowds about her experience and tells everyone in her East Liberty church about organ donation.

"I'm going to try my best to do everything I can to promote it, so people will understand that we need to help each other," she said.

Sunday, more than 107,800 people were listed on the national waiting list to receive an organ, maintained by the Organ Procurement and Transplantation Network.

Of the more than 7,900 people waiting in Pennsylvania, 42.6 percent were racial or ethnic minorities, more than twice the percentage of minorities in the state population. Of those waiting for kidneys, nearly 40 percent were black.

"There's a much higher number of minority patients who develop kidney disease," explained Dr. Jerry McCauley, medical director for kidney, pancreas and islet cell transplantation at the University of Pittsburgh Medical Center.

"We are disproportionately afflicted and affected by hypertension, diabetes and obesity," said Dr. Clive Callender, a professor of surgery at Howard University who began working three decades ago to close racial gaps in organ donation.

"It is critically important for minorities to participate in donation," he said.

Race and ethnicity play a role in matching organs to recipients, though scientists are not sure to what extent, Dr. Callender said.

For a kidney transplant, for example, the donor and recipient must have compatible blood types. But doctors also look at three pairs of cell surface proteins called HLA antigens, Dr. McCauley said.

"We all have roughly the same types of matching antigens, except they all tend to occur at different frequencies," Dr. McCauley said. "Those frequencies can be grouped by racial groups."

Black patients tend to have a larger number of those antigens, making it more difficult to find a matching donor. Black patients are also more likely to have a rejection episode, when antibodies attack a donor's tissue, he said.

Dr. Callender founded the National Minority Organ Tissue Transplant Education Program (MOTTEP) after he and a team of psychologists researched the reluctance to donate organs in black communities.

"We were first made aware of this problem in 1978," he said. At the time, about 70 percent of those waiting for organs in the southern United States were black, but far less than 10 percent of donors were, he said.

His team identified several reasons why African Americans were less likely to donate organs. The first was a lack of information: "Nobody was taking the time to ask the community and educate them," he said.

Some people were also wary because of religious misconceptions.

"People will say, 'You don't have your kidneys, you won't get your wings,' " he explained.

In addition, Dr. Callender found that many people did not want to donate organs because they distrusted health care providers.

Dr. McCauley said some African Americans still harbor distrust, remembering injustices like the Tuskegee experiment, a 40-year study during which researchers withheld treatment for syphilis from a group of poor black men.

During the 1980s and 1990s, Dr. Callender discovered that education and empowerment campaigns greatly increased the percentage of donors in black communities. He expanded MOTTEP's mission to include other minority populations, and today, MOTTEP also focuses on educating people to prevent diseases that lead to organ failure.

"We need to change our lifestyles," Dr. Callender said.

Last year, 10.8 percent of living and deceased donors in Pennsylvania were black, equal to the percentage of state residents who are black.

"It's a big success story," said Dr. McCauley.

Still, though 32.6 percent of those waiting for organs in Pennsylvania are black, black patients made up just 19.4 percent of those who received transplants in 2009.

The allocation of kidneys was once heavily determined by antigen matching, a system that adversely impacted black patients, Dr. McCauley said. Now, wait time is more important, but black patients continue to wait longer for transplants, he said, at least partly because of systemic processes that can hinder poor patients.

"A poor patient may not be listed as quickly," Dr. McCauley said. "People who are in lower socio-economic groups will get their evaluations slower or may not complete them at all."

Outreach workers still confront misconceptions about organ donation, too.

Some people believe that designated donors will be left to die if they land in a hospital, said Holly Bulvony, a spokeswoman for CORE.

"The medical teams that take care of the individual ... and the team that takes care of a recovery of organs are completely separate," Ms. Bulvony said.

Others believe that their religion bars organ donation. All major faiths support donation, she said.

Ms. Royster encounters myths. She has seen great strides made since her transplant, though.

"It has to be talked about. It has to be explained to people," she said. "It's going to affect someone in their families somewhere down the line."

"That message has to continue to resonate with people," Dr. McCauley said. "Or we could start to go back in the other direction."

Pennsylvanians can designate their tissues and organs for donation online, at www.donatelife-pa.org.

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