“Medical racism” in kidney care, how a calculation hurting black patients continued for decades
Some medical professionals and patients say two new federal policies are “righting a systemic wrong” and improving equity for kidney transplant patients.
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Since the 1990s, a calculation that factored in race and disadvantaged black patients was used to help determine when patients could be eligible for transplants.
Some experts believe thousands have gotten ill or even died as a result. Channel 9 spent months digging into the policies.
In 2022, a board of federal transplant policy makers took a major step: first they banned the use of race in an important calculation that measures kidney function, second, they credited patients negatively impacted by the calculation with wait-time toward their kidney transplants.
The calculation is known as the EGFR (Estimated Glomerular Filtration Rate) and is used to score a patient’s kidney function.
A score of 20 or below automatically qualifies a patient for the kidney transplant waitlist, but studies have shown the black race variable incorrectly increased scores by as much as 16 percent.
The Organ Procurement and Transplantation Network (OPTN) sets federal transplant policy and admits the inclusion of the race variable hurt black patients.
According to a press release by the OPTN, the inclusion of race in the calculation, “led to a systemic underestimation of kidney disease severity for many Black patients.”
Despite the new policies, some believe this isn’t enough to make up for decades of what they see as “medical racism.”
Eric Price was diagnosed with kidney disease as a child. He’s since received two kidney transplants. But his second transplanted kidney failed in late 2023.
In January of this year, Price was formally listed for his third kidney transplant, but with a shocking revelation.
His doctor told him he should have been on the waitlist 6 months earlier.
It’s because race was used to calculate his EGFR.
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“I was dumbfounded, and I was upset,” said Price in an interview with Channel 9.
Price told Channel 9 he is once again on dialysis and is all too familiar with the life-saving equipment.
While waiting for his second kidney, he was forced to dialyze regularly.
“For ten years, I was dilating three times a week, there was a point where I was a freshman in college. I didn’t have a car and I lived in Utah. And I was biking at 6am to get to dialysis and then biking home,” said Price.
Though Price was excited to receive credited wait-time for his third transplant, he wondered how race remained a variable for so long and how it affected the 10 years he waited for his second kidney.
Labs produced the calculation that included race, physicians across the U.S. referred patients based off it, and transplant programs used it to evaluate whether a transplant was appropriate. Price wanted to know why there wasn’t action earlier.
“There’s been decades going on people suffering. And nobody thought the change this?” said Price, “I waited a long time for a kidney. I could have been suffering less.”
The OPTN declined an interview with Channel 9 to explain why action was not taken sooner. They cited “ongoing litigation.”
In the meantime, hospital systems across the U.S. have had to comply with the new federal rules.
That includes Central Florida’s only transplant program at the Advent Health Transplant Institute.
Dr. Bobby Nibhanupudy is the Medical Director of Abdominal Transplant, at Advent Health.
He explained how the two federal policies have impacted the hospital.
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“We had to go through our entire waitlist of patients, which consisted of over 450 people. And we had to look back in their medical records that we had,” said Nibhanupudy.
According to Nibhanupudy, those records show 58 people on the waitlist were negatively impacted by the race-inclusive calculation.
Each of those 58 patients received a wait-time adjustment that moved them higher on the transplant waitlist.
He said the average wait-time adjustment for those patients was approximately three years.
However, the hospital has not audited the historic impact of the race-inclusive calculation.
“There’s no sunset to, you know, adjusting wait-times for any of these people,” said Nibhanupudy, “There’s a lot of things that people could change if they could do it earlier. But at least now we have the right way going forward.”
According to the federal government, between January and July of 2023, more than 6,000 patients had their wait-times adjusted.
As for Eric Price, he lives in Utah and is working with transplant doctors there to get his third kidney transplant.
In the meantime, he is on dialysis 5-days a week, connected to machines that clean his blood for three hours every round.
He lives by himself and is struggling to manage both kidney care and his full-time job.
This GoFundMe was started to help cover the mounting costs of his care and ease the burden of dialysis.
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