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Linkagesto Life: organ donation

Medical initiative targeted at blacks

Albany-- Organ donation for African-Americans to be discussed during panel at hospital

First published: Monday, July 28, 2003 - TimesUnion.com

African-Americans in New York donated their organs in greater numbers than ever last year, but experts say there still is room for improvement, especially as the number of blacks who need transplants, particularly kidneys, continues to grow.

Blacks are less likely to reject a transplant if the organ is from another African-American, according to Clive Callendar, director of the transplant center for Howard University in Washington, D.C.

In 2002, 61 blacks in New York state donated kidneys upon death, up from only 34 a decade earlier. Yet the number of African-Americans on the waiting list for transplants is outpacing that growth.

As of July 18, the number of African-Americans needing a kidney transplant in New York state alone stood at 2,014, according to the most recent data from the Organ Procurement Transplantation Network, which tracks transplant statistics across the country.

Figuring out ways to encourage more minorities to consider organ donation is the goal of a national and local initiative.

This Thursday, at Albany Medical Center, a panel discussion will be held to increase awareness in the Capital Region's minority community about the importance of organ donation.

The event, sponsored by the Center for Donation & Transplant in Albany, is meant to coincide with National Minority Awareness Day.

Marcia Caryofilles of Rensselaer, one of the featured panelists, said she knew her father wanted to donate his organs when he died seven years ago. "Talk to your family about your decision because they make the final decision," she said.

Caryofilles' father was 54 when he died of a stroke after a blow to the head during a fight. He donated two kidneys and his corneas, Caryofilles said.

"His kidneys went to a black woman, not that that matters to me. The person needed a kidney. What matters to me is that the myths are dispelled," she said.

Experts say there are several reasons why African-Americans don't agree to give their organs to others, including religious beliefs or the fear that organs will go to a white recipient.

"The first and foremost issue is the general lack of trust in the medical community and the feelings organs will go to somebody who is not African-American," said Jeff Orlowski, executive director of the Center for Donation & Transplant. Another reason, he said, is the misguided belief that donating organs is against one's religion.

"Yet in the United States there's not a single religion to come out against organ donations. It's not really against religion, but the myth is that it is," Orlowski said.

Gwendolyn Maddox, executive director of the Minority Organ and Tissue Transplant Education Program in Washington, D.C., said superstitions get in the way too.

"I hear people say: 'The good Lord gave me all these organs, I'm taking them with me,' " she said.

But organ donors are in great demand for all ethnic groups, not just the African-American community, said Dr. David Conti, director of the Abdominal Organ Transplantation Program at Albany Medical Center and medical director of the Center for Donation & Transplant.

"They have been flat for five to 10 years. The list grows and grows and more people die waiting," he said.

Overall, African-Americans make up 12 percent of the U.S. population and represent 12 percent of those who donate. "The number of organ donations from African-American patients in America is what one would expect given the number of African-Americans who make up the population," he said.

But the need is exacerbated by health challenges facing blacks. African-Americans, for example, are four times more likely to suffer from high blood pressure and diabetes, two conditions that can lead to kidney failure and necessitate transplants.

Nationally, blacks represent 32 percent of patients waiting for a kidney transplant, about three times the percentage of African-Americans living in the United States, according to the United Network for Organ Sharing, the organization that monitors donations and transplants across the country.

In December, UNOS created the Coalition on Donation in December to get the word out to blacks about organ donation with a national ad campaign, including public service announcements and billboards in African-American communities. The organization also is working with the National Association for the Advancement of Colored People and the Urban League.

The key is getting families, no matter what their ethnicity, to talk to each other about their feelings on organ donation early.

"Because we don't have those conversations ... they're asked to make decisions in a tense time and that's difficult to do," Conti said. "In a time of uncertainty, they tend to lean toward a no."

Debbie Gibbs, vice chairwoman of the Coalition on Donation's African-American campaign committee, said the organization has found that African-Americans don't think they have a reason to talk about organ donation and they don't see themselves as donors.

"They thought the typical donor was wealthy, white and young," she said.

She added that most people don't tend to think about their own death and go so far as to even avoid her organ donation information booth at health fairs. "Once they figure out what you're doing, people avoid your booth like you're going to take their organs right then," she said.

But 57-year-old Dorothy Carter, an African-American who lives in Albany received a new heart last year. She said she'd has no fears about donating her organs. "If I had organs that were still good, I would donate because someone helped me."