By Lauran Neergaard | Associated Press
PHILADELPHIA – 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 the cause .
As upsetting as this notification was, it was also part of an unprecedented move to alleviate racial inequality. Evans is among more than 14,000 black kidney transplant candidates who have so far been recognized for their 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 notice in a TikTok video to educate other patients. “How could this happen?”
At issue is a once widely used test that overestimated the functioning of black people’s kidneys, making them appear healthier than they actually were — all because of an automated formula that calculated results differently for black patients and not black. This race-based equation could delay the diagnosis of organ failure and evaluation for a transplant, exacerbating other disparities that already put 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 adopt race-neutral equations for calculating kidney function. Then the American Organ Transplant Network ordered hospitals to use only race-neutral test results to add new patients to the kidney waiting list.
“The immediate question arose: What about the people currently on the list? You can’t 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 find out which black kidney candidates might have qualified for a new kidney sooner without the race-based test – and adjust their wait times to catch up. he. This analysis continues for each newly enrolled Black patient to see if they also should have been referred earlier.
Between January 2023 and mid-March, more than 14,300 black kidney transplant candidates had their wait times changed, by two years on average, according to the United Network for Organ Sharing, which manages the transplant system. So far, more than 2,800 of them, including Evans, have received a transplant.
But this is just one example of a larger problem that permeates health care. Many formulas or “algorithms” used in medical decisions — treatment guidelines, diagnostic tests, risk calculators — adjust answers based on race or ethnicity in ways that disadvantage people of color.
Given the integration of these equations into medical software and electronic records, even doctors may not realize the extent of their impact on care decisions.
“Health equity experts have been sounding the alarm about how race has been misused in clinical algorithms for decades,” said Dr. Michelle Morse, chief medical officer of new York City.
Change begins, slowly. Obstetricians are no longer supposed to include race in determining a pregnant woman’s risk of attempting a vaginal birth after a prior cesarean section. The American Heart Association just removed race from a calculator commonly used to assess heart disease risk. The American Thoracic Society has urged replacing lung function assessment based on race.
The kidney saga is unique because of the effort to right a past wrong.
“A lot of times when we see health inequities, we just assume there’s nothing we can do about it,” Morse said. “We can make changes to restore trust in the health care system and to truly address the unjust and avoidable consequences faced by Black people and other people of color. »
Black Americans are three times more likely than whites to suffer from kidney failure. 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. So how did it get incorporated into the kidney function calculations?
eGFR, or estimated glomerular filtration rate, assesses kidney health based on how quickly a waste product called creatinine is filtered from the blood. In 1999, an equation used to calculate eGFR was changed to adjust the results of blacks relative to those of everyone else, based on some studies involving small numbers of black patients and a long-standing false theory. date on differences in creatinine levels. Until recently, this meant that many lab reports listed two results – one calculated for non-black patients and another for black patients that could overestimate kidney function by as much as 16%.
Not all black kidney candidates were affected. Some may have had kidney failure diagnosed without this test. So that others had a chance to benefit from the retrospective analysis mandated by UNOS, transplant center staff turned detectives often worked after hours and on weekends, searching for age-old records. several years for a test which, recalculated without racial adjustment, could make a difference.
“You contact the nephrologist, their primary care doctors, the dialysis units to get those records,” said Dr. Pooja Singh of the Jefferson Health Transplant Institute in Philadelphia, where Evans received his new kidney. “That first transplant patient for us was such a great moment for our program that work didn’t feel like work after that.
A high school sports specialist first spotted Evans’ kidney disease when he was 17 years old. As she completed her master’s degree and began earning her Ph.D. at Temple University, she began dialysis — nine hours a night while she slept — and was put on the transplant list.
The time it takes to get a kidney transplant depends on the patient’s blood type, medical emergency and a mix of other factors, including time spent on the waiting list. Evans was first enrolled in April 2019. When the Jefferson transplant center discovered her old lab tests, they discovered she should have qualified in September 2015.
“Just for context, when I was still a student, I should have been on the list,” she said, remembering the anger she felt upon reading the letter. What she called a “stunning” credit of another 3 1/2 years of waiting also provided “a glimmer of hope” that she would soon be offered a matching kidney.
Evans received a new kidney on July 4 and is healthy again, and she’s grateful the policy change came in time for her.
“You don’t know if people would be alive today” if this law had been passed sooner, she said. Yet this extra step of “making amends to fix the situation for those we can – I feel is very important and very necessary if you really want to bring more fairness and equality to the medical field “.
AP video journalists Tassanee Vejpongsa and Shelby Lum contributed to this report.
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