Scarcity of minority organ donors is 'dire'

Scarcity of minority organ donors is 'dire'

Myths, distrust and fear keep many from parting with potentially life-saving matches.

By NICOLE HUTCHESON, Times Staff Writer
Published August 26, 2007

Seated on the edge of the tan couch inside his slit of a trailer, William Franco thumbs the pages of a worn leather Bible.

Genesis 2:21: And the Lord God caused a deep sleep to fall upon Adam, and he slept: and he took one of his ribs, and closed up the flesh. ...

"The first organ transplant," Franco says in Spanish, with his wife, Maria, translating.

Franco smiles, his swollen abdomen inflating slightly. At 54, he needs a new liver.

Every Wednesday night Franco and his wife join about 20 other people, mostly Puerto Rican like them, at the clubhouse in their Tampa neighborhood. They come to pray, play dominoes and sometimes eat barbecue. Those who come are either waiting for an organ, know someone who is or are considering donating. Some potential donors who come say they are afraid to part with an organ for fear it will keep them from entering heaven "whole."

Franco cites passages in his Bible and tries to reassure them it is good to give. He knows his life and those of many others like him depend on dispelling such myths.

It often takes twice as long for minorities who need organ transplants to receive them, particularly African-Americans and Hispanics. The two groups constitute the largest percentage of people in need of organ transplants, but they are the least likely to be organ donors.

It's a deadly disparity, say health professionals. Almost 100,000 people are waiting for organs nationwide -- 600 in the Tampa Bay area, according to the United Network of Organ Sharing, which oversees the national waiting list. More than 50 percent on both lists are minorities.

Patients in need of a transplant are more likely to find a genetically compatible match within their own ethnic group.

This year, blacks made up 15 percent of the donor pool, while Hispanics made up 14 percent. Numbers for Native Americans are even more dismal; many point to spiritual beliefs that forbid them from leaving portions of their bodies on Earth after they die.

"It is dire," said Aisha Huertas, public outreach and marketing coordinator for Donate Life America, a nonprofit transplant organization. "When you factor in the number of minorities that are waiting, and compare that to the number who are giving, there is a huge difference and it points to a huge problem."

Experts point to lack of awareness, religious taboos and an overall distrust in the medical system as reasons for the shortage in minority organ donors.

Potential donors in these communities believe that doctors don't place as much value on their lives, said Patrice Miles, executive director of the National Minority Organ Tissue Transplant Education Program.

"People will tell me, 'I'm an organ donor but I don't have it on my license,' " said Miles, whose Washington, D.C.-based group works to raise awareness in the black community. "They don't want it noted."

An ugly incident

They're fearful doctors will say, " 'Well, she's almost gone anyway, so I might as well let her go and get her organs,' " Miles said.

For African-Americans, it's a mentality born, in part, from a particularly ugly incident in medical history known as the Tuskegee Experiment. From the 1930s to the 1970s nearly 400 black men from Alabama were told they were being treated for "bad blood." They really had syphilis. Public health doctors were conducting experiments on the men, but never treated them for the disease.

In the largely Catholic Hispanic community some say it's against their religion to donate organs, even though the Vatican has endorsed donation, Huertas said.

"This is 2007," said Huertas, who is Puerto Rican. "But as much as we don't want to admit we are superstitious and overly religious, in a way that isn't realistic."

Along with the Vatican, Judaism, Islam and most mainstream Protestant religions, as well as the Amish, have said organ donation is permissible.

Both the living and deceased can donate. Generally, living donors can only donate a kidney, part of the liver or a lobe of the lung. Physical and emotional testing must be done before someone is accepted as a living donor.

State law says deceased donors must be declared brain dead by two doctors before organ donation can be considered. In both cases, a surgeon who specializes in organ transplantation -- not the ER doctor -- performs the surgery.

"The option of donation doesn't come into play until there is no longer an option to save someone's life," said Jennifer Krouse of the LifeLink Foundation, a nonprofit transplant organization with an office in Tampa.

Groups like LifeLink have begun tailoring their message to reach minority communities, publishing materials in Spanish and enlisting the support of community and church leaders.

There is evidence such efforts have made an impact: The 15 percent donor tally for blacks so far this year compares with about 11 percent a decade ago. The 14 percent for Hispanics compares with about 9 percent a decade ago.

'So much need'

Tony Dungy, head coach of the Indianapolis Colts and former Tampa Bay Buccaneers coach, has publicly talked about donating his deceased son James' corneas.

There's more to be done, said Clive Callender, chairman of the department of surgery at Howard University.

"While blacks comprise 13 percent of the population we make up 35 percent of the waiting list, for kidneys," said Callender, who founded the National Minority Organ Tissue Transplant Education Program. "We're in so much need that we have to do better than our best."

On a recent day at Atwater's Cafeteria in St. Petersburg, Johnny Samuels tops off a plate of stewed chicken and okra with a tall glass of buttermilk, to "help keep the joints smooth."

At 70, he's health conscious. Doesn't eat red meat. And relies on natural remedies. But he's against being an organ donor.

"They could do what they want to do once you're on that operating table," said Samuels, a retired county worker, to his buddy Walter Ross, seated across the table.

Ross, 80, a preacher, has a bit more faith in the medical system. He had lung cancer in 1993.

"I got children, no telling what they might need," Ross said. "Sure, I would give."

And to prove it, he whips out his driver's license, shoves it forward so Samuels gets a good look. At the bottom left in orange letters it reads: Organ Donor.

Nicole Hutcheson can be reached at nhutcheson@sptimes.com or 727893-8828.

Fast Facts:

16 people die each day waiting for an organ transplant. Also, a new name is added to the national waiting list every 16 minutes.

More information

Interested in learning more about organ donation? Call the LifeLink Foundation at 1-800-262-5775 or visit its Web site: www.lifelinkfound.org/

http://www.sptimes.com/2007/08/26/news_pf/Worldandnation/Scarcity_of_minority_.shtml
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