Biased test kept many from new kidneys

Transplant lists are being revised

PHILADELPHIA — 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 racebased 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 US organ transplant network ordered hospitals to use only race-neutral test results in adding 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 chairperson 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.

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.

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 can put 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 affect 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.

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 previous 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.