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(NEW YORK) — Jazmin Evans is one of more than 14,000 Black kidney transplant candidates who found out that an outdated medical test may have inappropriately calculated their need for a transplant.
Evans, 29, was diagnosed with chronic kidney disease in January 2012. She started dialysis and was put on the kidney transplant waitlist in 2019.
“I just remember feeling, like, this is never gonna happen for me,” she said, speaking with ABC News.
The U.S. faces a dire kidney organ shortage, meaning patients with kidney failure must meet certain criteria to be considered good candidates for a transplant.
One of those considerations is a test called the “eGFR” calculation, which is a measure of a person’s kidney function. This metric takes into account factors like age, sex, body weight and — until recently — a person’s race. The decision to include race was based on outdated studies that relied on an assumption that Black patients had differences in kidney function compared to other groups.
In many cases, the use of a race-based score may have contributed to Black patients being placed lower on the waitlist.
“That really was problematic, but it was very widely accepted,” said Martha Pavlakis, former chair of the kidney committee with the Organ Procurement and Transplantation Network, an organization that administers the transplant system in the U.S. and maintains transplant policies. “It was what we were taught. It was what we turned around and taught other people.”
In 2020, the National Kidney Foundation and American Society of Nephrology established a national task force to reassess how race is taken into account when diagnosing kidney related illnesses. The task force’s final report outlined guidance stating that race variables shouldn’t be applied to kidney transplant candidates, which the Organ Procurement and Transplantation Network later implemented.
As a result, some people suddenly found themselves higher on the waitlist.
In January 2023, the algorithm evaluating kidney disease changed, eliminating race as a factor.
Evans said she was shocked when she received notice of her movement up the transplant list in 2023. She shared the news on TikTok at the time, showing a letter stating that she was eligible for a “waiting time modification.”
“My original wait time started April of 2019,” she says in the TikTok video. “With the new calculation for Black Americans, my ‘start date’ would have started [in] 2015.”
“At this point, I am eight years on the transplant list,” she continues. “For my blood type, the average waiting time is about four to five years. I could’ve [had] a kidney already.”
Evans’ story is just one of many examples of health inequities historically ingrained in the kidney transplant system.
“Everyone says, you know, we live in this post-racial society here in America, but that’s really not the truth,” Evans said, speaking with ABC News.
The 29-year-old, who finally received a new kidney in July 2023, has since dedicated her TikTok account to kidney health advocacy and education.
Michelle Josephson, former president at American Society of Nephrology, called the inclusion of race factors in the previous kidney transplant waitlist evaluations inappropriate.
“Race is a social construct and it should not be included in these [tests],” she said. “It’s not appropriate.”
Dr. Samira Farouk, a transplant nephrologist and volunteer at the National Kidney Foundation, echoed that sentiment, stating that race is not a risk factor for kidney disease.
“One risk factor that is related to race is the racism,” Farouk said, “so, thinking about decreased access to care and decreased access to medications, decreased access to optimal diabetes, and high blood pressure control.”
Carole Johnson, administrator at the Health Resources and Services Administration, said the agency had long heard from families and people in the transplant field that there was room for improvement in the evaluating systems.
“Families were waiting too long and individuals were struggling with the system,” she said. “It is absolutely unacceptable that there would be anything in the algorithm for allocating organs that would in any way be weighted based on race, without the science to support that.”
As a result of the evaluation changes, 14,280 Black kidney transplant candidates were moved up the waitlist between January 2023 and mid-March 2024, according to Organ Procurement and Transplantation Network data. Of that group, nearly 3,000 have received a kidney transplant.
Experts say this is an example of identifying the inappropriate use of race in medical care.
“We not only attempted to eliminate it from influencing care, but [can look at it] and say, for those people for whom it may have impacted their care, can we fix that?” Pavlakis said.
The inequities don’t end with kidney transplant waitlists, nephrologists pointed out. Racial biases also exist in calculations for the kidney donor profile index, which determines the quality of a donor kidney for a transplant.
“It really goes back to this initial assumption that race is a biological variable [which isn’t accurate],” Farouk said.
A new mandate is in the works which would omit the race bias in calculations for kidney donor allocations. An Organ Procurement and Transplantation Network vote to change the biased donor test is set for June.
“There’s a lot of issues in medicine and many other parts of our culture that speak to our very challenging history. And I think this is one of them,” Josephson said. “The good news is that we have pulled race out and we’ve tried to rectify some of the inequities that occurred because of it.”
Evans, too, said she feels “hopeful” for the future, adding that she hopes the changes end up “bringing more equity to the donation process or the transplant process.”
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