Last May, when Elizabeth-Ann Mohammed learned that her kidneys were failing, she was given two choices by her doctor: endure years of dialysis or find someone to donate a kidney.
But because she is black, finding a kidney wouldn’t be easy. On average, black patients wait nearly five years for a kidney transplant – about 18 months longer than their white counterparts.
The reasons for this disparity, experts say, involve genetics, economics and donor rates. Regardless, the numbers reveal a harsh reality. More than 3,500 patients died last year waiting for a kidney transplant, and one-third of them were black. Yet black Americans make up only 12 percent of the nation’s population.
The most common explanation for the difference in wait times is that the needs of the black community far exceed its current donation level, making transplants more difficult because organs tend to transplant better between members of the same ethnic groups. Indeed, only about 700 kidneys were taken from deceased black donors in 2003, compared with 4,000 white donors.
But that is only part of the explanation, says Dr. Clarence Foster, a transplant surgeon at the University of Maryland Medical Center in Baltimore.
“Diseases that can cause kidney failure are more common in African-Americans and people in lower socioeconomic conditions,” Foster says.
Such diseases include diabetes, obesity and high blood pressure and may be influenced by a “lack of primary health care,” Foster says. And these conditions are often treated at later stages, when kidney failure can’t be avoided.
Patients without kidney function must either go on a dialysis machine, which filters the body’s waste, or seek a kidney donor. Organs can come from live donors (humans have two kidneys but need only one), such as family members, or patients can join a national waiting list for kidneys and other organs usually donated by the deceased.
Although kidneys are the most commonly transplanted organ, with thousands of operations performed each year, about 61,000 Americans needed a kidney as of March 11. About 21,000, or 35 percent, were black, according to the United Network for Organ Sharing, a nonprofit organization under contract with the U.S. Department of Health and Human Services.
UNOS, based in Richmond, Va., keeps a list of patients waiting to receive organs from those who have volunteered their organs after they have died. UNOS helps determine who gets an organ through a formula that examines such factors as blood type, time spent on the waiting list, and the distance between the potential recipient and the donor.
The organization looks at the compatibility of the donor and recipient using antigens as genetic markers. Historically, blacks didn’t often receive organs from white donors because of the differences in genetic markers. And because there were fewer black donors, blacks waited longer for transplants.
In the past few years, better surgical techniques and drugs aimed at lowering the chance of organ rejection have decreased the reliance on genetic markers in matching donors with recipients. In 1995, UNOS eliminated the importance of four of the six antigens used to measure compatibility, making interracial donations easier.
We’ve “increased the number of ethnic minorities receiving transplants annually with only a very slight decrease to allocation” to whites, says Dr. Winfred Williams, who heads UNOS’ minority-affairs committee. Trying to make the system fair, he adds, is “a constant effort.”
Cliff McClenney, past president of the American Society of Multicultural Health and Transplant Professionals, says progress has been made, but there is still much to be done.
“If it’s a four-lap race,” he says, “we’ve got around the first lap.”
The UNOS waiting list is not the only obstacle for blacks who need an organ transplant. Williams, a kidney-transplant specialist at Massachusetts General Hospital in Boston, says a person’s income may determine whether he or she receives a kidney in a matter of months – or never.
He calls it the “green screen.” Patients who are poor and uninsured rarely consider transplant surgery because the procedure costs too much, Williams says. And because black Americans are disproportionately poor and are less likely to have insurance than white Americans, according to U.S. Census statistics, this barrier hits the black community especially hard.
Even with insurance, a patient could face other impediments, Williams adds. Deductibles may be too expensive. Or in some cases, the insurance policy will pay for the surgery but not for the essential post-transplant medication.
“These are systematic barriers to transplantation,” he says.
In addition, there is often resistance within the black community to donate organs, especially when it comes to donations after death.
The Rev. Lawrence Womack, with St. James Episcopal Church in Baltimore, says he sees this phenomenon in his largely black congregation. “In general, there is a squeamishness about donating an organ,” he says.
“The community that’s the most in need is often the most reluctant to donate,” notes Charlie Alexander, president of the Transplant Resource Center of Maryland, a Baltimore-based advocacy group. “The system has not yet succeeded in educating the (black) community to a point where they want to donate.”
Alexander says there is a fear among some blacks that if they agree to become donors after death, emergency-room doctors won’t try to save them, in order to harvest their organs.
He adds that many blacks feel that even if they do donate an organ, it will be given to the more privileged members of society, namely affluent white patients.
Foster, the University of Maryland transplant surgeon, says he believes many blacks have a “general distrust of the medical community.”
After learning that lupus, a chronic inflammatory disease, had destroyed her kidneys, 42-year-old Mohammed didn’t hesitate on a course of action. “I need a kidney,” she told her family.
Less than a year later, Mohammed is wrestling on the couch in her home in Laurel, Md., with her 19-year-old son, Nigel Bartholomew.
Both share scars from the December surgery during which Bartholomew gave one of his kidneys to his mother.
“I did some research and found that a donation from a living donor is better than a cadaver. There’s a better chance of me not rejecting it,” she says. “Plus, the wait is not as long.”
To increase such family participation, groups such as the University of Maryland Medical Center, the Transplant Resource Center of Maryland and Linkages to Life, a Washington-based group that educates the black community about organ donation, are distributing pamphlets at dialysis centers and meeting with black church congregations in an attempt to dispel myths about organ donation.
The efforts seem to be paying off. In 2003, 713 blacks donated their kidneys after death. Last year, 800 kidneys were donated.
It is with living donors that kidney-transplant specialists rest their hopes. For while the number of deceased donors has remained relatively stagnant nationally, the number of living donors has spiked in the past decade.
In 1994, only 424 living black people donated a kidney. That number has more than doubled, following a national trend for all ethnic groups.
Kimberly Dutton Terrell, who gave a kidney to her father in an operation in Baltimore last week, said she was always willing to donate an organ after death. But Terrell, 25, says she never expected to donate one while she was alive.
“Never in a million years did I think I was going to donate my organs as a living donor,” the Charlotte, N.C., resident says. But when her father’s kidneys failed, she didn’t hesitate. “My father and I never had a conversation about it. It was automatic. I knew this was God’s plan.”
Almost a week after the surgery, Terrell and her father are doing well and have gone home from the hospital.
Foster, who removed Terrell’s kidney and is encouraged by the increase in live organ donations in the black community, notes, “the gap is closing.”
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