On a Sunday afternoon last year Larry Studesville received the most important phone call of his life. A young man had died in a tragic accident; did Studesville want his kidney? Studesville, then 62, was at UW Hospital within two hours. "It was another chance at life," he recalls.
A grieving family's gift helped Studesville, whose own kidneys were failing due to hypertension and diabetes, beat grim odds. But other African-Americans have not been so fortunate.
Ever since the first kidney transplant was performed in 1954, there has been a growing chasm between supply and demand when it comes to transplant organs, about 80 percent of which are kidneys. The number of people waiting in the United States for a renal transplant has more than quintupled over the past two decades, from 16,294 in 1989 to 85,473 today. Every day 92 people are added to the national waiting list, and 12 people die waiting. Last year in Wisconsin, 93 people died waiting for a transplant.
The calculus is bleaker for African-Americans. Studesville, a grant administrator with Madison's community development block grant office, was matched with his new kidney only four months after registering for a transplant, but many other African-Americans in Wisconsin and across the country find themselves waiting years longer than white patients for transplants. And many of them face a significantly lower likelihood of ever getting one. A 2007 study by researchers at the University of Wisconsin Medical School found that African-American patients in Wisconsin were 75 percent less likely than white patients to get a kidney. Other studies and government data document similar disparities across the country. "There is an increasing gap between African-Americans and white patients," says UW nephrologist Byran Becker, one of the study's authors and president of the National Kidney Foundation, an advocacy group for patients. "Our health care system is heading the wrong way, and we should think of how to change that."
This weekend Studesville and thousands of others who have received or donated transplanted organs will participate in the 2010 National Kidney Foundation U.S. Transplant Games in Madison. The event is a celebration of one of modern medicine's true miracles - and a chance to highlight the need to spread the progress more equitably, says Dr. Francis Delmonico, a professor of surgery at Harvard Medical School and director of renal transplantation at Massachusetts General Hospital. Delmonico heads the NKF's End the Wait campaign to increase organ donations and reduce inequities. "Transplantation benefits people greatly, but we need to do a better job of addressing the inadequacies of the system," he says. "We've been aware of these disparities for years. The data is indisputable. But there hasn't been any action. It's time to put everybody together in a room and redress these issues."
A Capital Times analysis of data compiled by state and federal health agencies, private researchers, and the United Network for Organ Sharing, the organization that oversees this country's organ donations, found disparities at every step of the transplant process, from the prevalence of diseases leading to renal failure to the numbers of donors and recipients to death rates.
To begin with, African-Americans are several times more likely to develop diseases like hypertension and diabetes that lead to kidney failure, according to countless studies. New research suggests this group is hit hard in part because of a genetic predisposition to the disorders; many African-Americans also lack the regular access to decent health care that can keep such conditions under control.
African-Americans also make up a disproportionate share of the 354,000 people in this country - including 5,000 in Wisconsin - who need to go on dialysis. While only 13 percent of the country's population, blacks make up 40 percent of those on dialysis and a third of patients waiting for a renal transplant. Some of them will need to wait a long time. According to UNOS data, 39 percent of African-American patients who registered for a transplant seven years ago are still waiting or have died, nearly twice the proportion of white patients who suffered those fates.
Wisconsin's African-Americans, a mere 6 percent of the state's population, account for one out of four patients on the state waiting list but only one out of every eight of those patients to receive a kidney. Put another way, African-Americans are 26.2 percent of those on Wisconsin's waiting list but have received 13.2 percent or 1,052 of the 7,952 kidneys transplanted in the state since 1988, while whites, 58 percent of those on the list, have received a lopsided 77.2 percent of the transplants.
At the UW Hospital, which houses the country's third-largest kidney transplant center, clear disparities emerge in transplant rates according to data kept by the Scientific Registry of Transplant Recipients on 846 patients on the hospital's waiting list between 2004 and 2006. By the end of the first year, 38.2 percent of waiting Caucasian patients had received a transplant compared to 21.7 percent of African-Americans. By year two, the numbers and the gap jumped to 52.5 percent for whites and 39.2 percent for African-Americans. And by the third year, 58.5 percent of Caucasians had received a transplant compared to 43.3 percent of the waiting African-Americans.
Both black and white patients at UW Hospital were transplanted at significantly higher rates than national averages. But Becker is frustrated that his colleagues have failed to look carefully at what his 2007 study shows about racial disparities in the state. "Nobody paid attention internally. Nobody picked up this information to examine why in a state with one of the highest transplant rates in the country the trend was that there is an increasing gap between African-Americans and white patients," he says. "We had hoped the study would prompt an examination of this program at the least, but there was no conversation."
More attention has been paid to another racial disparity, the reluctance of minorities to be organ donors.
In Wisconsin, 54 percent of drivers have checked the "yes" box for organ donation on their driver's licenses, according to data compiled by the Wisconsin Organ and Tissue Donor program. But consent rates drop to half that for African-Americans. Only 73 of the 16,293 people signed up by June 30 for the state's new online organ donor registry were African-American. This reluctance translates to a severe shortage of organs from minority donors: Since 1988, 336 kidneys have been recovered from deceased and living African-American donors in the state, compared to 5,600 from whites. "You wonder if we're a little bit behind the times," Studesville says. "When someone passes away, that's a wasted organ."
Wasted, because organs from minority donors are desperately needed and could help close the gap between white and black transplant rates. Transplantation is colorblind. Race is not a direct factor in matching. Studesville, for example, received a kidney from a white donor and is thriving. But odds are that people of the same ethnic or racial background are more likely to have compatible blood and tissue types, factors that are still taken into account - though less than they used to be, thanks to new drugs and procedures - during matching.
So officials have been working hard to recruit more minority donors. A key obstacle, officials say, is overcoming a profound distrust of the medical system. Between 1932 and 1972, hundreds of black men were in effect used as guinea pigs and denied treatment for syphilis so researchers could study the effects of the disease. These infamous Tuskegee, Ala., experiments still affect the way many minorities view medical providers. "There is a lack of trust here," reports Rev. Lee Shaw, a minister who works as an organ outreach coordinator for the Wisconsin Donor Network in Milwaukee. "It is a residual of racism. A lot of people are afraid they will be allowed to die so their organs can be harvested for a wealthy white person. I have to address this head-on. I have to say that the small possibility of a black person being treated unfairly is outweighed by the benefits of donating to our people. We cannot allow ourselves to become paranoid to our own detriment. Our people are suffering. Look at the statistics. A disproportionate number of black people are needing kidneys and dying on transplant lists. We need to help ourselves."
Rev. Clarence Shaw, a Milwaukee minister who also recruits donors for the network, says another barrier is the belief that to enter heaven, one's body must remain whole. Shaw regularly tells people: "If God is calling me home, and he's made a body someone else can use, why put it in the ground for food for animals? God made that part, and it can be used again."
Such outreach led to an increase in organ donations among Milwaukee's African-Americans a few years ago, but now the economy has lead to a worrisome dip in donor rates across all ethnicities and across the country. Experts say that potential living donors are unwilling and unable to take the time off from work to undergo the complex procedures required. Money worries also explain why many people with limited income view dialysis, covered by Medicare, as a safer alternative than transplantation: While the transplant itself is covered by Medicare, three years after the operation patients under age 65 must pay for the anti-rejection drugs themselves, which can total $20,000 a year.
One change officials seem close to enacting after years of debate would speed up the wait process for many African-Americans by including time on dialysis as time waiting, one of the factors taken into account when selecting a transplant recipient.
Such a reform might have left Studesville without a match last year, since changing the allocation algorithm to include those who have been on dialysis for years would leave other patients who were proactive in trying to seek a transplant referral early, before going on dialysis, without their past advantage. This irony is an example of just how difficult it is to reform a system with not enough kidneys to go around. "Disparities exist because you have a very small piece of pie," explains Dr. Carlton Young, a transplant surgeon at the University of Alabama in Birmingham who has researched racial disparities. "You almost have to be like Solomon to divide a very scarce resource up. You can't help somebody without hurting somebody else."
That equation, of course, has always been one of the tragic realities of organ transplants. So often, one family's loss is another family's hope. Studesville is grateful every day, he says, to the stranger who is now a part of his body and his new life. "Words cannot express how it feels," he says. This weekend, he will be competing in the 5K road race. Two years ago, he didn't have the energy to golf even a few holes, he recalls. "Today I can finish 18 holes, and I'm ready to golf another 18."
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