Organ donation: Clock is ticking on miracles

More than 21,000 blacks need transplant, but kidneys are few

by Elizabeth Lynch

(Poughkeepsie Journal - February 24, 2005) - It took Ulster County resident Charles Myers two years just to get on the waiting list for a kidney transplant.

Wappingers Falls resident Ron Williams does home dialysis four times a day, while he waits for a new kidney.

City of Poughkeepsie resident Donna Wheatly waited eight years for a second kidney transplant, after her first transplant failed.

Marvin Oliver, a Town of Poughkeepsie resident, also waited eight years -- but it was for his first kidney.

All four Hudson Valley residents are black. Because of that, their wait for a kidney transplant is longer than average. The longer potential organ recipients wait, the sicker they become and the more difficult it is for a transplant to be successful.

"It's such a life-changing experience," said Oliver, who had a kidney transplant in 2002. "You have a whole new appreciation for things."

Sixteen people die each day in New York waiting for a transplant. A third of those are blacks, according to the New York Organ Donor Network, which is based in Manhattan but works with hospitals in Dutchess County.

It's a bottom-line problem of supply and demand.

The greatest demand is for kidneys. Of the 2,195 people waiting in the network's region, more than 1,900 are black.

Black Americans represent 12 percent of organ donors nationwide -- about the same as their representation in the overall population.

But they have a higher rate of kidney failure because they have a higher rate of diabetes and high blood pressure. As a result, they make up 35 percent of those waiting for kidneys, according to the United Network for Organ Sharing, a nonprofit organization that matches organ donor and recipients and facilitates each organ transplant in the United States.

In 2001, the most recent year statistics are available, there were less than 400,000 people living in the United States with kidney failure, called end-stage renal disease, according to the National Institute of Diabetes, and Digestive and Kidney Disorders.

More than 21,000 blacks are waiting for a kidney. Of those, more than 7,000 -- about a third -- have been waiting for three years or more, compared to 25 percent who are white.

"There are more Caucasian kidneys available and, proportionally, more African-Americans needing kidneys," said Dr. Khalid Butt, a surgeon at Westchester Medical Center who does kidney transplants.

In the past, blacks were suspicious of the medical establishment, Butt said. Often, when they were asked to donate a deceased relative's organs, it was by a white doctor -- not someone who looked like them.

"There was a lack of education, a lack of trust and understanding," Butt said. "Much of that is changing with education efforts."

To increase awareness in the black community of the importance of organ donation, New York Organ Donor Network has established a formal partnership with the National Minority Organ and Tissue Transplant Education Program.

There are 58 organ procurement centers nationwide. Each has its own criteria for determining who gets an organ. Organs are checked first against the national list for a perfect match. Then they are offered to those on the local list, then the regional and then back to the national list.

The waiting time differs for each of the centers and by each organ. In some areas where there is lower population density, the wait can be shorter. Population centers such as New York City, Los Angeles and Chicago have major transplant centers that draw people from across the country. As a result, the wait can be long.

Who gets a kidney from the Center for Donation and Transplant in Albany is driven by the amount of time a person is waiting.

For a kidney, all the person has to be is the same blood type, and their cells have to be tested to make sure the organ won't be rejected immediately, said Jeffrey Orlowski, executive director of the Albany center.

"The waiting time is the primary consideration," he said.

Matches are determined

There are six antigens used to match kidneys. Using the antigens to determine the match is referred to as "tissue typing." In a perfect match, it has to be shown there is a better chance the transplant will be successful. In cases where fewer than six antigens match, there is no statistical difference in short- or long-term outcomes, Orlowski said.

The exception is in cases where a kidney is a perfect match. All kidneys are checked against the national database for potential recipients. Those that are a perfect match are shipped to that individual -- regardless of where they live in the country, Orlowski said.

"Matching has decreased in importance in some areas of the country," he said.

The Albany center covers 23 counties in upstate New York, including Ulster. The New York Donor Network, based in Manhattan, covers the southern portion of the state, including Dutchess County. Its policy requires tissue typing for a match.

Doctors, said Rob Kochik, director of Clinical Operations for the Manhattan network, "still feel some degree of match is important."

There is an ongoing debate about whether to change the national guidelines to reduce the importance of the antigen match.

"It's a question of how much good [a partial match] does," Kochik said.

Many people spend years on dialysis before a kidney becomes available.

Oliver waited eight years. He got a transplant Nov. 12, 2002. He had kidney failure in 1994.

Getting the transplant was "such a life-changing experience," said the father of three, who teaches special education in the Peekskill city school district.

"I try to treat myself better, not only for myself, but the individual who gave this give to me," said Oliver, who is also a preacher in the Bethel Church of Christ in Poughkeepsie.

Oliver does not know how close of a match the kidney is to his tissue type.

"Close enough," he said.

Regardless of whether the donor networks use matching or not, the bottom line is more people are waiting for organs than there are donors.

Only about 1 percent of all deaths are from traumatic brain injury. People who are pronounced brain dead are the best candidates to be donors than those who die of old age or disease, said Lauren Quinn, a spokeswoman for the Albany center.

Some hospitals, including St. Francis Hospital in the Town of Poughkeepsie, are attempting to harvest organs from people who have died of natural causes, said Ann Vokes, director of patient-care services at St. Francis Hospital.

But the key to finding more donors, Vokes said, is education. Families need to discuss their preferences for organ donation long before death is a possibility.

"There is a lack of knowledge and understanding in the general population," said Vokes, who has worked with transplant recipients to raise awareness, especially in the black community.

All hospitals are required to notify the New York Organ Network of every death. Even though St. Francis follows that policy, only 60 percent of those who have been asked to donate a loved one's organs agreed to do so.

That amounts to three people in 2004. Statewide, there is a 46 percent consent rate.

A surviving relative can overrule an individual's desire to be an organ donor, even if the individual has a signed donor card and made it clear they want to donate their organs.

Hospital staff do not approach the surviving family member. Representatives from the New York Organ Donor Network fill that task. But they do not approach the family until the person has been pronounced dead.

Families provide help

Many kidney recipients turn to family when they need an organ. There are almost as many living kidney donors as deceased -- 8,828 compared to 9,177, according to the United Network for Organ Sharing.

Organs from living donors are preferred, said Butt, the doctor who performs kidney transplants at Westchester Medical Center.

Each person has two kidneys, but the human body only needs one to survive. At Westchester Medical Center, as in many other transplant centers, slightly more than half of the donated kidneys are from living donors, Butt said.

"That's why God gave us two kidneys," Butt said. 'So you can give away one to someone we love."

The longer someone waits for a donated organ, the greater the degree of complication.

After a transplant, "not only is the quality of life immensely improved but the longevity of life is doubled," Butt said.

Donna Wheatly can attest to that.

She now has the energy to go bowling, go to plays in Manhattan and play basketball with her granddaughter.

"It's just great. It's wonderful," Wheatly said.

But she also knows what a great sacrifice a stranger made so she could get her life back.

In her case, all she knows about that stranger is that his name was Larry, he was 40 and he had a 16-year-old son and a 13-year-old daughter at the time of his death.

"I think about him all the time," Wheatly said. "I think about the fact that someone had to pass [away] so I can have a better life. It takes a special person to so that."

Elizabeth Lynch can be reached at llynch@poughkeepsiejournal.com

On the Web

Find out more about organ transplants, and who's waiting for them, visit this link: www.poughkeepsiejournal.com/etc/transplant.shtml

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