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.”