PHILADELPHIA — Jazmin Evans waited for a new kidney for four years when her hospital revealed surprising news: She should have been put on the transplant list in 2015 instead of 2019 — and a racially biased organ test was at fault.
Despite the distressing news, it's part of an unprecedented effort to address racial inequality. Evans is among over 14,000 Black kidney transplant candidates credited for lost waiting time, elevating their priority for the transplant.
“I remember just reading that letter repeatedly,” said Evans, 29, of Philadelphia, who shared the notice in a TikTok video to inform other patients. “How could this happen?”
The problem revolves around a previously widely used test that overvalued the kidney function of Black individuals, making them appear healthier than they actually were — due to a formula that calculated results differently for Black and non-Black patients. This race-based equation could delay the diagnosis of organ failure and assessment for a transplant, worsening existing disparities that already make Black patients more susceptible to needing a new kidney but less likely to receive one.
A few years ago, the National Kidney Foundation and American Society of Nephrology urged laboratories to switch to race-neutral equations in calculating kidney function. Subsequently, the U.S. organ transplant network mandated hospitals to use only race-neutral test results when 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 describes the subsequent actions as an attempt at restorative justice: The transplant network granted hospitals a year to determine which Black kidney candidates could have qualified for a new kidney sooner if not for the race-based test — and amend their waiting time accordingly. This assessment continues for each newly listed Black patient to ascertain if they, too, should have been referred sooner.
Between January 2023 and mid-March, over 14,300 Black kidney transplant candidates have had their wait times adjusted, with an average of two years, according to the United Network for Organ Sharing, which oversees the transplant system. To date, over 2,800 of them, including Evans, have undergone 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 deeply ingrained these equations are in medical software and electronic records, even doctors may not realize how extensively they impact care decisions.
“Health equity scholars have been sounding the alarm about the way race has been misused in clinical algorithms for years,” said Dr. Michelle Morse, New York City’s chief medical officer.
Changes are starting slowly. Obstetricians are no longer supposed to consider race when assessing the risk of a pregnant woman attempting vaginal birth after a previous 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 story is special because of the effort to address a past mistake.
Morse said, "When we see health inequities, we often assume there’s nothing we can do about it. We can make changes to restore faith in the health system and to truly 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. About 30% of the roughly 89,000 people on the waiting list for a new kidney are Black.
Race is not a biological factor like age, sex, or weight — it's a social construct. So how did it become part of kidney function calculations?
The eGFR evaluates kidney health based on how quickly creatinine, a waste compound, is filtered from the blood. Due to an outdated theory about differences in creatinine levels, many lab reports until recently would list two results — one for non-Black patients and another for Black patients, which could overestimate kidney function by as much as 16%.
Not every Black kidney candidate was impacted. Some may have been diagnosed with kidney failure without that test. For others to potentially benefit from UNOS’ mandated reassessment, transplant center staff often worked tirelessly to find old records and recalculate tests without the race adjustment.
Dr. Pooja Singh of Jefferson Health’s transplant institute in Philadelphia, where Evans received her new kidney, said, "You're reaching out to the nephrologist, their primary care doctors, the dialysis units to get those records. 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."
Evans' kidney disease was first discovered during a high school sports physical at age 17. While working on her master's degree and starting her Ph.D. at Temple University, she began dialysis and was put on the transplant list.
The wait for a kidney transplant depends on a patient's blood type, medical urgency, and various other factors, including time on the waiting list. Evans was first listed in April 2019. When the Jefferson transplant center found her old lab tests, they discovered she should have qualified in September 2015.
She said, "When I was still an undergrad, I should have been on the list." She felt angry when she read the letter that revealed she had to wait an extra 3½ years. However, it also gave her hope that she'd be offered a matching kidney soon.
Evans received a new kidney on July 4 and is healthy again. She is thankful that the policy change happened in time for her.
“If the change had happened earlier, we don't know if people would still be alive today,” she mentioned. However, taking the additional step to fix the situation for those who can benefit is crucial for bringing more fairness and equality into the medical field.
