Jazmin Evans had been waiting for a new kidney for four years when her hospital revealed shocking news: She should have been put on the transplant list in 2015 instead of 2019 — and a racially biased organ test was to blame.
As upsetting as that notification was, it also was part of an unprecedented move to mitigate the racial inequity. Evans is among more than 14,000 Black kidney transplant candidates so far given credit for lost waiting time, moving them up the priority list for their transplant.
"I remember just reading that letter over and over again," said Evans, 29, of Philadelphia, who shared the notice in a TikTok video to educate other patients. "How could this happen?"
At issue is a once widely used test that overestimated how well Black people's kidneys were functioning, making them look healthier than they really were — all because of an automated formula that calculated results for Black and non-Black patients differently. That race-based equation could delay diagnosis of organ failure and evaluation for a transplant, exacerbating other disparities that already make Black patients more at risk of needing a new kidney but less likely to get one.
A few years ago, the National Kidney Foundation and American Society of Nephrology prodded laboratories to switch to race-free equations in calculating kidney function. Then the U.S. organ transplant network ordered hospitals to use only race-neutral test results in adding new patients to the kidney waiting list.
"The immediate question came up: What about the people on the list right now? You can't just leave them behind," said Dr. Martha Pavlakis of Boston's Beth Israel Deaconess Medical Center and former chair of the network's kidney committee.
Pavlakis calls what happened next an attempt at restorative justice: The transplant network gave hospitals a year to uncover which Black kidney candidates could have qualified for a new kidney sooner if not for the race-based test — and adjust their waiting time to make up for it. That lookback continues for each newly listed Black patient to see if they, too, should have been referred sooner.
Between January 2023 and mid-March, more than 14,300 Black kidney transplant candidates have had their wait times modified, by an average of two years, according to the United Network for Organ Sharing, which runs the transplant system. So far more than 2,800 of them, including Evans, have received a transplant.
But it's just one example of a larger problem permeating health care. Numerous formulas or "algorithms" used in medical decisions — treatment guidelines, diagnostic tests, risk calculators — adjust the answers according to race or ethnicity in a way that puts people of color at disadvantage.
Given how embedded these equations are in medical software and electronic records, even doctors may not realize how widely they impact care decisions.
"Health equity scholars have been raising alarm bells about the way race has been misused in clinical algorithms for decades," said Dr. Michelle Morse, New York City's chief medical officer.
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Change is beginning, slowly. No longer are obstetricians supposed to include race in determining the risk of a pregnant woman attempting vaginal birth after a prior C-section. The American Heart Association just removed race from a commonly used calculator of people's heart disease risk. The American Thoracic Society has urged replacing race-based lung function evaluation.
The kidney saga is unique because of the effort to remedy a past wrong.
"Lots of time when we see health inequities, we just assume there's nothing we can do about it," Morse said. "We can make changes to restore faith in the health system and to actually address the unfair and avoidable outcomes that Black people and other people of color face."
Black Americans are over three times more likely than white people to experience kidney failure. Of the roughly 89,000 people currently on the waiting list for a new kidney, about 30% are Black.
Race isn't a biological factor like age, sex or weight — it's a social construct. So how did it make its way into calculations of kidney function?
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Not every Black kidney candidate was affected. Some may have had kidney failure diagnosed without that test. For others to have a chance at benefitting from UNOS' mandated lookback, transplant center staff-turned-detectives often worked after hours and weekends, hunting years-old records for a test that, recalculated without the race adjustment, might make the difference.
"You're reaching out to the nephrologist, their primary care doctors, the dialysis units to get those records," said Dr. Pooja Singh of Jefferson Health's transplant institute in Philadelphia, where Evans received her new kidney. "That first patient getting transplanted for us was such a great moment for our program that the work didn't feel like work after that."
At the age of 17, Evans' kidney disease was first discovered during a high school sports physical. As she pursued her master's degree and started her Ph.D. at Temple University, she began undergoing nine hours of dialysis each night while she slept and was added to the transplant list.
The timeline for receiving a kidney transplant varies based on factors such as blood type, medical urgency, and time spent on the waiting list. Evans was initially placed on the list in April 2019, but a review of her old lab results by the Jefferson transplant center revealed that she should have qualified back in September 2015.
Reflecting on this discovery, Evans expressed frustration at the delay, noting that she should have been listed while still an undergraduate student. However, the realization that she had been waiting an additional 3½ years also gave her hope that a suitable kidney would soon be available.
On July 4, Evans successfully received a new kidney and is now in good health. She is grateful that the policy change occurred in time for her to benefit from it.
She emphasized the importance of rectifying past mistakes to ensure equity and equality in the medical field, stating that such actions are necessary to save lives and promote fairness.
