Organ donation advocates reach out to African Americans

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.

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.
(Photo: Howard Nathan is the Executive Director of the Gift of Life Donor Program) [audio:100406tekidney.mp3]

When Nanci Woodson got her new kidney, it was, well, a relief to finally have her body working the way it’s supposed to.

Woodson: You feel so much better. You know, your blood is circulating, um, I don’t want to get gross, but you can go.

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.

More information:

National Kidney FoundationGift of Life Donor FoundationThe 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.

Health educators say the misconceptions about organ donation are hard to fight: Some people think becoming a donor will prevent them from having an open-casket funeral. Others worry that after their organs are harvested, relatives will be left with bills to pay.

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.

In the Delaware Valley, the Gift of Life Donor Program matches patients with available organs.

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.