As upsetting as that notification was, it also was part of an unprecedented move to mitigate 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 race based 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 U.S. 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 Boston’s
Beth Israel Deaconess Medical Center and former chair of the network’s kidney committee.
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