Incorporating a race-neutral formula for kidney transplant leads to more Black patients receiving the kidneys they need

“I thought I was going to skip through life, but then it happened to me.”

Arthur Smalls, 70, was diagnosed with kidney failure after experiencing swelling in his face and ankles and being unable to climb the stairs to bed at night. It ran in his family, but he ignored the warning signs and put off going to the doctor. 

“I waited in the parking lot for 30 minutes arguing with my wife because I just didn’t want to go in,” Smalls said. “But I still remember later when the doctor said I was not going back home.” Smalls was put on the waitlist for a new kidney and needed dialysis three days a week while he waited. 

He waited six years before receiving a kidney transplant on Oct. 20, 2023.

Smalls grew up in the Eastside neighborhood of Charleston, South Carolina, worked in law enforcement in North Charleston for 32 years and his time on the transplant waitlist likely could have been shorter. 

The board of directors of the Organ Procurement and Transplantation Network (OPTN) voted back in June of 2022 to approve a new national measure requiring transplant hospitals to use a race-neutral formula when placing patients on the waitlist. Hospitals across the country had until January of 2024 to implement this new formula, and the change has already helped Black patients in South Carolina, like Smalls, to receive their lifesaving kidneys.

The average patient spends three to five years on the waitlist for a kidney, according to the National Kidney Foundation, but with a formula that factored in race, many Black patients were not placed on the waitlist soon enough or spent more time on the waitlist than they could physically afford. 

 

The formula, called the Estimated Glomerular Filtration Rate or eGFR, helps physicians to measure their patients’ kidney function, and those results determine when their wait time begins. By removing the Black race coefficient, the OPTN hopes to cut down on delayed treatment and improve health equity.

Michael Casey, M.D., transplant nephrologist and medical director of kidney transplantation at MUSC, said the Black race coefficient stems from long-standing biases and results in greater health disparities. “There has been a lot of education in recent years about disparities, and there’s a lot out there we’re trying to correct. But as soon as we made this policy change, Black patients were getting calls for their transplants within a few weeks.”

With Black individuals comprising over a quarter of South Carolina’s population and facing a threefold higher risk of developing kidney failure in their lifetimes, the recent formula update affects a significant portion of people in the state. This initiative has long been a priority for MUSC. With key changes in the evaluation process, like removing obstacles and incorporating telehealth, researchers have already reported great strides. This formula change will add to that.

 

Casey points to the misconception in medicine that Black people as a population are homogenous and without variability. “More nuanced and standardized studies have debunked the idea that the risk of kidney rejection in all African Americans is higher, for example,” he said.

He also doesn't hesitate to acknowledge that the old formula differentiated Black patients from everyone else. It did not take into account any other race when determining kidney function. 

“In the Southeast, many patients wait upward of five years for a kidney,” Casey said. “Not all patients make it five years, and many miss their opportunity. Anything we can do to get these patients transplanted sooner and even the playing field is super important.”

For Smalls, the race-neutral formula was vital for his quality of life and health. After initially ignoring symptoms from his kidney failure, he is now committed to lifestyle changes after his experience. And at his five-month checkup this month, all was well. 

Smalls said he was nervous before undergoing his kidney transplant. “My experience here at MUSC, going through the transplant, was great,” Smalls said. “I’ve never met nicer people. They made life easy because they kept me informed and comfortable all the time. And while I was afraid because I didn’t know what to expect, they made me feel as if I was going to be OK. And so, when I left here, I felt like I just made friends at this whole place.”

There are currently 1,573 people waiting for a kidney in South Carolina, according to the OPTN. Casey said it’s gratifying that the list is one step closer to being equitable for everyone.