Race and ethnicity no longer affect a kidney candidate’s chance of getting a deceased donor transplant once they are listed, but that was not always the case. To learn more about how the organ donation and transplant community worked towards achieving racial equity for kidney candidates and how access can continue to improve, United Network for Organ Sharing talked with a longtime transplant nephrologist and UNOS volunteer who has witnessed many changes in kidney allocation over the last few decades.
Jerry McCauley, M.D., served on the Organ Procurement and Transplantation Network Minority Affairs Committee four times since 2004, including a term as chair. He was also a member of the OPTN Membership and Professional Standards Committee and most recently completed a term as an at large member of the OPTN Board of Directors.
What is the biggest change that you’ve seen as far as access to deceased donor transplants for minority patients over the last few decades?
I think the most obvious is the improved access to kidney transplants for the African American community. Once they’re on the transplant list, African American kidney transplant candidates have equal access for transplantation.
That wasn’t always the case.
In the early nineties, African Americans waited longer than others to get transplanted once they were on the list. Some of the reasons that people were waiting longer were well-intended policies that had unintended consequences. The transplant professional community believed that the closer the tissue typing, the more likely the organs were to survive. It turned out, though, that at a statistical level it made a difference, but at a practical level, it really was not important. So over time we got rid of the A locus, then got rid of the B locus, and then we’re down to the D locus. And all of this was happening over the 20 plus years. A lot of this came out of the minority affairs committee. And then in December 2014, when the new kidney allocation system (KAS) started, we began using dialysis start as the beginning of waiting time. That was clearly the time when we could demonstrate repeatedly that access for our African American patients—once they were listed—was equivalent to everyone else.
Perhaps the second biggest change is really in philosophy. In the example of the unintended consequences that I talked about earlier, no one developed a policy that would knowingly disadvantage African Americans. That certainly was not the intent, but it turned out that way. So when we create any policy now, UNOS models that policy for how it will affect African Americans and other ethnic groups. The policy method and process now is very much informed by concerns about limiting access for populations of patients, and certainly for other unintended consequences.
What barriers remain and, in your opinion, what else can be done to increase access to transplantation for minority groups?
Once a patient is on the waitlist, the system policy that we have assures equity. The problem is everything before that. A good nephrologist should be thinking about transplantation for any patient who has progressive end-stage renal disease. That doesn’t happen as much with African Americans and Hispanics and probably poor people. But clearly African Americans and Hispanics are not referred or preemptive transplants as much as others. So I would say it starts in the nephrology clinics. Once they get on dialysis, they are not referred as quickly. And a lot of that may be socioeconomic. It’s the people who are in the low middle class and lower economic classes that are probably most disadvantaged. That’s really what needs to be worked on. If a patient is noncompliant, we need to find out why and help them. Most social workers will usually know what the social situation is with those patients. I think we need to really be engaged with our patients, find out why, and then try to solve whatever that problem is to help them move ahead.
What do you want people to know about transplant and equity?
The biggest thing would be that we are highly committed to equity. I would say we’re probably an industry leader, certainly, in that way. The beauty of UNOS is that the policy is informed by data and modeling.
Jerry McCauley M.D., M.P.H., is director of nephrology and vice chairman of health equity, diversity and inclusion at Thomas Jefferson University Hospitals.