Jazmin Evans is among more than 14,000 black kidney transplant candidates who discovered an outdated medical test may have inappropriately calculated their need for a transplant.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 began dialysis and was put on the kidney transplant waiting list in 2019.
“I just remember feeling like this would never happen for me,” she told ABC News.
The United States faces a severe shortage of kidney organs, meaning patients with kidney failure must meet certain criteria to be considered good transplant candidates.
One of these considerations is a test called “eGFR” calculation, which is a measure of a person’s kidney function. This measurement takes into account factors such as a person’s age, gender, weight and, until recently, race. The decision to include race was based on outdated studies that relied on the assumption that black patients had differences in kidney function compared to other groups.
In many cases, using a race-based score may have contributed to black patients being placed lower on the waitlist.
“It was really problematic, but it was very widely accepted,” said Martha Pavlakis, former chair of the kidney committee of the Organ Procurement and Transplantation Network, an organization that administers the transplant system in the United States and maintains transplant policies. “This is what we were taught. This is what we transformed and taught others.”
In 2020, the National Kidney Foundation and the American Society of Nephrology created a national task force to reevaluate how race is considered when diagnosing kidney disease. The task force’s final report presented guidelines stating that racial variables should not be applied to kidney transplant candidates, which the Organ Procurement and Transplantation Network subsequently implemented.
As a result, some people suddenly found themselves higher on the waiting list.
In January 2023, the algorithm assessing kidney disease changed, eliminating race as a factor.
Evans said she was shocked when she received notice of her move to the transplant list in 2023. She then shared the news on TikTok, showing a letter stating she was eligible for a “modification of the waiting time”.
“My initial wait time started in April 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’ve been on the transplant list for eight years,” she continues. “For my blood type, the average waiting time is about four to five years. I could have already (had) a kidney.”
Evans’ story is just one example of health inequities historically rooted 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 to 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 of the American Society of Nephrology, called the inclusion of racial factors in previous evaluations of the kidney transplant waiting list inappropriate.
“Race is a social construct and it should not be included in these (tests),” she said. “This is not appropriate.”
Dr. Samira Farouk, a transplant nephrologist and National Kidney Foundation volunteer, echoed that sentiment, saying race is not a risk factor for kidney disease.
“A risk factor related to race is racism,” Farouk said, “so thinking about decreased access to care and medication, decreased access to optimal diabetes and control of high blood pressure”.
Carole Johnson, administrator of the Health Resources and Services Administration, said the agency has long heard from families and people working in the transplant field that there is room for improvement in the rating systems.
“Families were waiting too long and individuals were having difficulty with the system,” she said. “It is absolutely unacceptable that something in the organ allocation algorithm is weighted based on race, without the science to support it.”
As a result of the assessment changes, 14,280 Black kidney transplant candidates were moved to the top of the waiting list between January 2023 and mid-March 2024, according to data from the Supply and Transplant Network of organs. Of this group, nearly 3,000 received a kidney transplant.
Experts say this is an example of identifying the inappropriate use of race in medical care.
“We’ve not only tried to prevent it from influencing care, but (we can look at it) and say, for people where this might impact their care, can we fix this?” » said Pavlakis.
Inequalities do not stop at kidney transplant waiting lists, nephrologists stressed. Racial bias also exists in calculations of the Kidney Donor Profile Index, which determines the suitability of a donor kidney for transplant.
“It really comes back to that initial assumption that race is a biological variable (which is not accurate),” Farouk said.
A new mandate is in the works that would omit racial bias in kidney donor benefit calculations. A vote by the Organ Procurement and Transplantation Network to change donor bias testing is scheduled for June.
“There are a lot of problems in medicine and many other aspects of our culture that speak to our very difficult history. And I think this is one of them,” Josephson said. “The good news is that we have eliminated race and we have tried to rectify some of the inequalities that have resulted.”
Evans also said she was “hopeful” for the future, adding that she hoped the changes would eventually “bring more fairness to the donation process or the transplant process.”
Ashley Yoo, MD, a member of the ABC Medical News Unit and an internal medicine resident at George Washington University Hospital in Washington, DC, contributed to this report.
ABC News
