During the three and a half years she waited for a kidney transplant, retired paralegal Mia Ray left her home in Orange, N.J., every other day and drove to a dialysis center in nearby Livingston. Sitting in a cubicle for hours at a time, Ray watched videos while her blood was cleansed of toxins. Over time she got to know most of the other patients, and as they came and went, she began to notice something. "You hate to say it, or even think it," says Ray, who is African-American. "But it was very rare that I knew someone of color who got a kidney."
Ray received her new kidney in August. But her suspicion turns out to be well founded. According to figures from the United Network for Organ Sharing (UNOS), which administers the organ-allocation system, ethnic minorities make up 50 percent of the 96,581 people on the waiting list, but white patients receive 63 percent of organs. Even for kidney transplants, for which Medicare funding should provide a level playing field, minorities made up 60 percent of the waiting list, but less than 45 percent of transplants. "This is just the tip of the iceberg," says Dr. Ashwini Sehgal, assistant professor of biostatistics at Case Western Reserve University. A growing body of research shows that black and Hispanic patients face longer delays in getting referred, spend longer on the waiting list and have worse survival rates even after receiving an organ.
The disparities have prompted soul-searching in the medical community. "This is well recognized, but highly controversial," says Dr. Devon John, a black transplant surgeon at NYU Medical Center. In theory, allocation of organs is race-neutral. Patients receive points for medical need, tissue type and time on the waiting list; doctors use a computer algorithm to decide who gets organs. But they admit the system doesn't always work as intended. Computer programs alone can't eliminate the potential for subconscious bias--or overt racism--among the physicians who use them. "The computer may be colorblind, but the people who put information into the computer are not," says Dr. Clive Callender, director of the Howard University Hospital transplant center. "This is directly the consequence of institutionalized racism." UNOS admits the disparity is a problem, but denies racism. "I don't believe the transplant system is racist," says Dr. Carlton Young, chair of the group's minority-affairs committee. "It's an issue of American medicine and the biases that have always existed there."
But some researchers point to more tangible factors, including an imbalance in supply and demand of suitable organs for minorities. Although race isn't an explicit factor, minority patients--especially African-Americans--are more genetically diverse, making it harder for them to find suitable tissue matches. Black and Hispanic people donate organs at the same rate as whites, but they are predisposed to organ-damaging diseases like diabetes, so that in spite of campaigns to promote organ donation in minority communities, there's no way for minority donation alone to keep up with the minority demand for organs. Doctors must struggle to find suitable matches for black and Hispanic patients among predominantly white donors.
Minority patients struggle at every step of the process. "From first getting referred to moving up the waiting list, African-Americans are disadvantaged," says Dr. Francis Weng, a transplant specialist at St. Barnabas Medical Center in New Jersey. Eliminating even the appearance of bias is vital, doctors say. "There's an ethical imperative to do the best we can to ensure patients have equal access to life-saving treatments," says Dr. John Ayanian, associate professor of health policy at the Harvard School of Public Health. In 2003, UNOS set less-stringent matching criteria for kidney transplants to channel more organs to minority candidates, while in the organ-procurement district covering northern California, doctors eliminated tissue typing altogether and now match organs by blood type alone. Modern immunosuppressants help compensate for less-than-perfect matches, although inevitably, more organs are rejected. "It's a trade-off between utility and justice," said Dr. John Roberts, chief of kidney, pancreas and liver transplantation at UCSF Medical Center. But, he warns, tinkering with tissue matching will eliminate only a tiny percent of the access gap. Policymakers hope a Medicare-funded tracking system and new rules that streamline passage onto the waiting list--both due to start regional trials next year--will help. But to find a real solution, the transplant community itself may have to undergo a change of heart.