PHILADELPHIA (AP) \u2014 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 \u2014 and a racially biased organ test was to blame.<\/p>\n\n\n\n
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.<\/p>\n\n\n\n
\u201cI remember just reading that letter over and over again,\u201d said Evans, 29, of Philadelphia, who shared the notice in a TikTok video to educate other patients. \u201cHow could this happen?\u201d<\/p>\n\n\n\n
At issue is a once widely used test that overestimated how well Black people\u2019s kidneys were functioning, making them look healthier than they really were \u2014 all because of an automated formula that calculated results for Black and non-Black patients differently. That race-based equation could delay diagnosis of organ failure and evaluation for a transplant, exacerbating other disparities<\/u><\/a> that already make Black patients more at risk of needing a new kidney but less likely to get one.<\/u><\/a><\/p>\n\n\n\n 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 U.S. organ transplant network ordered hospitals to use only race-neutral test results in adding new patients to the kidney waiting list.\u201cThe immediate question came up: What about the people on the list right now? You can\u2019t just leave them behind,\u201d said Dr. Martha Pavlakis of Boston\u2019s Beth Israel Deaconess Medical Center and former chair of the network\u2019s kidney committee.<\/p>\n\n\n\n <\/a>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 \u2014 and adjust their waiting time to make up for it. That lookback continues for each newly listed Black patient to see if they, too, should have been referred sooner.<\/p>\n\n\n\n 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.<\/p>\n\n\n\n But it\u2019s just one example<\/u><\/a> of a larger problem permeating health care. Numerous formulas or \u201calgorithms\u201d<\/u><\/a> used in medical decisions \u2014 treatment guidelines, diagnostic tests, risk calculators \u2014 adjust the answers according to race or ethnicity in a way that puts people of color at disadvantage.<\/p>\n\n\n\n Given how embedded these equations are in medical software and electronic records, even doctors may not realize how widely they impact care decisions.<\/p>\n\n\n\n \u201cHealth equity scholars have been raising alarm bells about the way race has been misused in clinical algorithms for decades,\u201d said Dr. Michelle Morse, New York City\u2019s chief medical officer.<\/p>\n\n\n\n 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 prior C-section. The American Heart Association just removed race from a commonly used calculator of people\u2019s heart disease risk. The American Thoracic Society has urged replacing race-based lung function evaluation.<\/p>\n\n\n\n The kidney saga is unique because of the effort to remedy a past wrong.<\/p>\n\n\n\n \u201cLots of time when we see health inequities, we just assume there\u2019s nothing we can do about it,\u201d Morse said. \u201cWe can make changes to restore faith in the health system and to actually address the unfair and avoidable outcomes that Black people and other people of color face.\u201d<\/p>\n\n\n\n Black Americans are over three times more likely than white people to experience kidney failure. Of the roughly 89,000 people currently on the waiting list for a new kidney, about 30% are Black.<\/p>\n\n\n\n Race isn\u2019t a biological factor like age, sex or weight \u2014 it\u2019s a social construct. So how did it make its way into calculations of kidney function?<\/p>\n\n\n\n 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 modified to adjust Black people\u2019s results compared to everyone else\u2019s, based on some studies with small numbers of Black patients and a long-ago false theory about differences in creatinine levels. Until recently that meant many lab reports would list two results \u2014 one calculated for non-Black patients and another for Black patients that could overestimate kidney function by as much as 16%.<\/p>\n\n\n\n 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\u2019 mandated lookback, transplant center staff-turned-detectives often worked after hours and weekends, hunting years-old records for a test that, recalculated without the race adjustment, might make the difference.<\/p>\n\n\n\n \u201cYou\u2019re reaching out to the nephrologist, their primary care doctors, the dialysis units to get those records,\u201d said Dr. Pooja Singh of Jefferson Health\u2019s transplant institute in Philadelphia, where Evans received her new kidney. \u201cThat first patient getting transplanted for us was such a great moment for our program that the work didn\u2019t feel like work after that.\u201d<\/p>\n\n\n\n A high school sports physical first spotted Evans\u2019 kidney disease at age 17. While finishing her master\u2019s degree and beginning to earn her Ph.D. at Temple University, she started dialysis \u2014 for nine hours a night while she slept \u2014 and was placed on the transplant list.<\/p>\n\n\n\n How long it takes to get a kidney transplant depends on patients\u2019 blood type, medical urgency and a mix of other factors \u2014 including how long they\u2019ve spent on the waiting list. Evans was first listed in April 2019. When the Jefferson transplant center unearthed her old lab tests, they found she should have qualified in September 2015.<\/p>\n\n\n\n \u201cJust for context, when I was still an undergrad I should have been on the list,\u201d she said, recalling the anger she felt as she read the letter. What she called \u201ca mind-blowing\u201d credit of 3\u00bd more years waiting also provided \u201ca glimmer of hope\u201d that she\u2019d be offered a matching kidney soon.<\/p>\n\n\n\n Evans got a new kidney on July 4 and is healthy again, and grateful the policy change came in time for her.<\/p>\n\n\n\n \u201cYou don\u2019t know if people would be alive today\u201d if it had been enacted earlier, she said. Still, that extra step of \u201cmaking amends to fix the situation for those that we can \u2014 I feel like it\u2019s very important and it\u2019s very necessary if you\u2019re truly wanting to bring more equity and equality into the medical field.\u201d<\/p>\n\n\n\n