Organ donation advocates reach out to African Americans
Monday, April 5th, 2010
In the U.S., more than 4,000 people die each year while they wait for a kidney. Many of them are African Americans who become too sick before a suitable match can be found. WHYY has this story to mark Donate Life month.
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When Nanci Woodson got her new kidney, it was, well, a relief to finally have her body working the way it's supposed to.
Wilmington resident Nanci Woodson got a new kidney two and half years ago. She says most people know little about organ transplantation. "It's not a class you take in school. It's also scary, no one likes to talk about death."
Woodson used to be one of the 400,000 people in the United States who rely on dialysis. Three times a week, for four hours each visit, the Wilmington resident was hooked to a machine that removed toxins and excess fluid from her blood.
Woodson: Dialysis takes time and energy; it was a terrible experience for me. That day you have dialysis, most patients are pretty worn out.
The need for donor kidneys overwhelms the supply, and depending on a patient's blood type, some people wait three or four years. The average wait time for African Americans is even longer.
That’s one reason Woodson encourages other African Americans to check the box on their driver’s license application and join the organ donor registry. Often the response is “no.”
Woodson says most people have little idea how a new kidney can transform a life.
Woodson: I've had someone tell to me I've never met one of you before, as if I was an alien. I'm not sure what they think of, I'm not sure what I thought of before I really found out about organ transplantation.
Dr. Velma Scantlebury is a transplant surgeon at Christiana Care in Wilmington. "When we have donors we don't specifically look to see whether that donor is African American or Caucasian, whether the recipient is African American or Caucasian, that really doesn't factor into the equation at all. "
Velma Scantlebury is a transplant surgeon at Christiana Care in Wilmington. She’s found that African Americans are particularly reluctant to donate.
Scantlebury: You hear constantly, I'm not going to the hospital, I'm not signing my organ donor card, because whether it's my grandmother, or my uncle or my aunt — signed a donor card — or went to the hospital with a broken toe — and ended being a donor.
Scantlebury says a mistrust of doctors and hospitals resides in the collective consciousness of African Americans. That distrust, she says, is an understandable legacy of decades of unequal access to health care especially the injustice of the Tuskegee, Alabama experiment that denied widely available treatment to hundreds of black men.
So Scantlebury is working with black pastors in Delaware to reassure African Americans that safeguards now protect patients and potential donors.
Organ donor rates among African Americans hover around 10 or 15 percent – well below the national average. Meanwhile about 35 percent of patients waiting for a kidney are black.
Scantlebury: So, it's not fair to say, yes, we are desperately in need of kidneys but we're not donating, then we are not contributing to the pool.
Howard Nathan is the Executive Director of the Gift of Life Donor Program. "There's no cost to an individual who donates an organ or tissue. It's really neighbor helping neighbor and a gift from one person to another."
Network president Howard Nathan says matching and transplantation are colorblind: A donor of any race could be a match for a recipient of any race. But he adds …
Nathan: There are some matching factors that do matter that are linked to race.
So, if most of the potential donors are white, blacks on the transplant list are at a disadvantage. It’s less likely that when a kidney becomes available – it will be a good match for an African American patient.
Nathan: So certainly, the more African Americans that donate, the more likely that an African American gets that organ.
About 5,000 people across the tri-state region are on the kidney transplant list. At the Gift of Life, that’s a number Nathan repeats often.
Nathan: This doesn't go to some person in California, who's a movie star. These are people that go to your church; they're sitting beside you at work.
Across the region, close to half of licensed drivers in the region are on the organ donor registry. For Philadelphia County the sign-up rate is about 31 percent, while the high for Pennsylvania is nearly 56 percent in State College and Chester County.
Donate Life is holding a candlelight celebration tonight at 6:30 p.m. (Monday, April 5th) on the steps of the Franklin Institute, 222 North 20th Street, to draw attention to the Pennsylvanians who are waiting for an organ or tissue transplant.
Over half of the 106,000 Americans on the national transplant waiting list will die before they get a transplant. Most of these deaths are needless. Americans bury or cremate about 20,000 transplantable organs every year. Over 9,000 of our neighbors suffer and die needlessly every year as a result.
There is a simple way to put a big dent in the organ shortage — give organs first to people who have agreed to donate their own organs when they die.
Giving organs first to organ donors will convince more people to register as organ donors. It will also make the organ allocation system fairer. People who aren't willing to share the gift of life should go to the back of the waiting list as long as there is a shortage of organs.
Anyone who wants to donate their organs to others who have agreed to donate theirs can join LifeSharers. LifeSharers is a non-profit network of organ donors who agree to offer their organs first to other organ donors when they die. Membership is free at http://www.lifesharers.org or by calling 1-888-ORGAN88. There is no age limit, parents can enroll their minor children, and no one is excluded due to any pre-existing medical condition.
There is a simple way to put a big dent in the organ shortage — allocate donated organs first to people who have agreed to donate their own organs. UNOS, which manages the national organ allocation system, has the power to make this simple policy change. No legislative action is required.
Americans who want to donate their organs to other registered organ donors don't have to wait for UNOS to act. They can join LifeSharers, a non-profit network of organ donors who agree to offer their organs first to other organ donors when they die. Membership is free at http://www.lifesharers.org or by calling 1-888-ORGAN88. There is no age limit, parents can enroll their minor children, and no one is excluded due to any pre-existing medical condition.
Giving organs first to organ donors will save more lives by convincing more people to register as organ donors. It will also make the organ allocation system fairer. People who aren't willing to share the gift of life should go to the back of the waiting list as long as there is a shortage of organs.