April 12, 2024

A biased test stopped thousands of black people from getting a kidney transplant. It’s finally changing

PHILADELPHIA (AP) — Jazmin Evans had been waiting four years for a new kidney 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 troubling as that report was, it was also part of an unprecedented move to alleviate racial inequality. Evans is one of more than 14,000 Black kidney transplant candidates who have been recognized so far for the lost wait time, moving them up the priority list for their transplant.

“I remember reading that letter over and over again,” said Evans, 29, of Philadelphia, who shared the message 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 functioned, making them look healthier than they actually were — all because of a computerized formula that calculated results differently for black and non-black patients. That race-based comparison could delay the diagnosis of organ failure and evaluation for a transplant. which further widens other differences which already puts black patients at greater risk of needing a new kidney, but less likely to get one.

A few years ago, the National Kidney Foundation and the American Society of Nephrology urged laboratories to switch to race-free equations when calculating kidney function. Subsequently, the American Organ Transplant Network ordered 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 Beth Israel Deaconess Medical Center in Boston and former chair of the network’s renal committee.

Pavlakis calls what happened next an attempt at restorative justice: The transplant network gave hospitals a year to discover which Black kidney candidates could have qualified for a new kidney sooner had they not gone for the race-based test — and to wait time to make up for this. It. That review continues for each newly referred black patient to see if they, too, should have been referred earlier.

According to the United Network for Organ Sharing, which runs the transplant system, more than 14,300 Black kidney transplant candidates had their wait times adjusted by an average of two years between January 2023 and mid-March. So far, more than 2,800 of them, including Evans, have undergone a transplant.

But it is just one example of a larger problem permeating healthcare. Numerous formulas or “algorithms” used in medical decisions – treatment guidelines, diagnostic tests, risk calculators – tailor answers based on race or ethnicity in ways that put people of color at a disadvantage.

Given how embedded these equations are in medical software and electronic records, even physicians may not realize how broadly they influence healthcare decisions.

“Health equity scientists have been raising alarm bells for decades about how race is misused in clinical algorithms,” says Dr. Michelle Morse, Chief Medical Officer of New York City.

Change starts slowly. Obstetricians are no longer expected to consider race when determining the risk of a pregnant woman attempting a vaginal birth after a previous cesarean section. The American Heart Association just removed race from a commonly used calculator for people’s cardiovascular disease risk. The American Thoracic Society has pushed to replace race-based lung function evaluation.

The kidney story is unique because of the efforts to right a past mistake.

“When we see health disparities, we often assume there is nothing we can do about it,” Morse says. “We can make changes to restore trust in the health care system and truly address the unfair and avoidable consequences that Black people and other people of color face.”

Black Americans are more than three times as likely to develop kidney failure as white people. Of the approximately 89,000 people currently on the waiting list for a new kidney, about 30% are black.

Race is not a biological factor like age, gender or weight – it is a social construct. How did it end up in kidney function calculations?

The eGFR, or estimated glomerular filtration rate, evaluates kidney health based on how quickly a waste product called creatinine is filtered from the blood. Due to a long-held false theory about differences in creatinine levels, until recently many laboratory reports often reported two results: one calculated 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 affected. Some may have been diagnosed with kidney failure without that test. To give others the opportunity to benefit from the UNOS-commissioned retrospective, transplant center employees turned detectives often worked after hours and on weekends, searching for years-old records for a test that, recalculated without the breed adjustment, could make a difference .

“You contact the nephrologist, their primary care physicians and the dialysis units to get that data,” said Dr. Pooja Singh of the Jefferson Health Transplant Institute in Philadelphia, where Evans received her new kidney. “That first patient transplanted for us was such a great moment for our program that work didn’t feel like work afterward.”

A high school sports physical therapist first discovered Evans’ kidney disease at age 17. While completing her master’s degree and her Ph.D. at Temple University, she started dialysis — nine hours a night while she slept — and was placed on the transplant list.

How long it takes to get a kidney transplant depends on the patient’s blood type, medical urgency, and a combination of other factors, including how long they have been on the waiting list. Evans was first listed in April 2019. When the Jefferson Transplant Center dug up her old lab tests, they discovered she should have qualified in September 2015.

“Just for context, I should have been on the list when I was a student,” she said, recalling the anger she felt when she read the letter. What she called “a mind-boggling” wait of another 3½ years also gave “a glimmer of hope” that she would soon be offered a suitable kidney.

Evans received a new kidney on July 4 and is healthy again, and grateful that the policy change came in time for her.

“You don’t know if people would still be alive today” if it had been implemented earlier, she said. Still, I think that extra step of “making amends to resolve the situation for those we can is very important and very necessary if you really want to bring more equity and equality to the medical field.”

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AP Videojournalists Tassanee Vejpongsa and Shelby Lum contributed to this report.

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The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute’s Science and Educational Media Group. The AP is solely responsible for all content.

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