By LAURAN NEERGAARD (AP Medical Writer)
PHILADELPHIA (AP) — Jazmin Evans had been awaiting a new kidney for four years when her hospital informed her of surprising news: She should have been placed on the transplant list in 2015 instead of 2019 — and a biased organ test was at fault.
Although the notification was distressing, it was also part of an unprecedented effort to address the racial inequality. Evans is one of over 14,000 Black kidney transplant candidates who have been acknowledged for the time they lost, which has elevated their priority for the transplant.
“I recall reading that letter repeatedly,” said Evans, 29, of Philadelphia, who shared the notification in a TikTok video to educate other patients. “How could this happen?”
The problem lies with a previously widely used test that overestimated the kidney function of Black individuals, making them appear healthier than they actually were — all due to an automated formula that computed results differently for Black and non-Black patients. This race-based calculation could delay the detection of organ failure and the assessment for a transplant, worsening other disparities that already put Black patients at a higher risk of needing a new kidney but less likely to receive one.
Several years ago, the National Kidney Foundation and American Society of Nephrology pushed laboratories to transition to race-neutral equations in assessing kidney function. Subsequently, the U.S. organ transplant network mandated hospitals to utilize only race-neutral test results when adding new patients to the kidney waiting list.
“The immediate question arose: What about the people currently on the list? You can’t just abandon them,” said Dr. Martha Pavlakis of Boston’s Beth Israel Deaconess Medical Center and former chair of the network’s kidney committee.
Pavlakis describes the subsequent actions as an effort toward restorative justice: The transplant network granted hospitals a year to identify Black kidney candidates who could have qualified for a new kidney earlier if not for the race-based test — and adjust their waiting time to compensate for it. This review process continues for each newly listed Black patient to determine if they, too, should have been referred earlier.
Between January 2023 and mid-March, over 14,300 Black kidney transplant candidates have had their wait times adjusted, averaging two years, as reported by the United Network for Organ Sharing, which oversees the transplant system. To date, over 2,800 of them, including Evans, have received a transplant.
However, this is just one instance of a broader issue impacting healthcare. Many formulas or “algorithms” used in medical decisions — treatment guidelines, diagnostic tests, risk calculators — adjust the outcomes based on race or ethnicity in a way that disadvantages people of color.
Because these equations are deeply ingrained in medical software and electronic records, even physicians may not realize the extent to which they influence care decisions.
“Health equity scholars have been expressing concerns about the misuse of race in clinical algorithms for many years,” said Dr. Michelle Morse, New York City’s chief medical officer.
Change is starting to happen slowly. Obstetricians no longer need to consider race when assessing the risk of a pregnant woman attempting vaginal birth after a prior C-section. The American Heart Association has removed race from a commonly used calculator of people’s heart disease risk. The American Thoracic Society has recommended replacing race-based lung function evaluation.
The kidney situation is special because of the effort to correct a past mistake.
“Often when we see health disparities, we assume there’s nothing we can do about it,” Morse said. “We can make changes to rebuild trust in the health system and to actually deal with 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. About 30% of the roughly 89,000 people currently on the waiting list for a new kidney 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?
The eGFR, or estimated glomerular filtration rate, evaluates kidney health based on how quickly a waste compound called creatinine gets filtered from blood. In 1999, an equation used to calculate eGFR was changed to adjust Black people’s results compared to everyone else’s, based on some studies with small numbers of Black patients and a long-ago false theory about differences in creatinine levels. Until recently, many lab reports would list two results — one calculated for non-Black patients and another for Black patients that could overestimate kidney function by as much as 16%.
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, searching through 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. “The first patient getting transplanted for us was such a great moment for our program that the work didn’t feel like work after that.”
Evans’ kidney disease was first detected during a high school sports physical at age 17. While completing her master’s degree and beginning her Ph.D. at Temple University, she started dialysis — for nine hours every night while she slept- and was placed on the transplant list.
The wait time for a kidney transplant depends on patients’ blood type, medical urgency, and a range of other factors, including how long they’ve been on the waiting list. Evans was initially listed in April 2019. When the Jefferson transplant center found her old lab tests, they discovered she should have qualified in September 2015.
“Just for context, when I was still an undergrad I should have been on the list,” she said, recalling the anger she felt as she read the letter. What she called “a mind-blowing” credit of 3½ more years waiting also provided “a glimmer of hope” that she’d be offered a matching kidney soon.
Evans received a new kidney on July 4 and is now healthy and thankful that the policy change happened in time for her.
“You can’t be sure if people would still be alive today” if it had been put into action earlier, she said. However, taking the extra step to “correct the situation for those that we can — I believe it’s very important and necessary if you truly want to promote more fairness and equality in the medical field.”
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The Health and Science Department of the Associated Press is supported by the Science and Educational Media Group of the Howard Hughes Medical Institute. The AP is solely responsible for all content.
