Waiting for an organ transplant? How quickly you get one may depend on your race

ATLANTA — Georgia resident Cleveland Holt says the treatment he received based on his race was anything but fair.

“We put our trust into the medical system, and we expect to be treated fairly. I don’t agree with race being involved,” Holt said.

Holt said that he’s one of thousands of African Americans who received delayed kidney transplants because of the color of their skin.

“My kidney function had bottomed out and I could not live without dialysis or a transplant,” Holt said.

Diagnosed with kidney disease in 1999, he began dialysis in 2020.

While waiting for a transplant, Holt began researching and discovered race played a part in how hospitals determined how long patients waited to receive kidney transplants.

“That had us, African Americans, going on at about a 16% longer wait time,” he said.

The formula medical professionals use is called Estimated Glomerular Filtration Rate, or EGFR.

It was established in the late 1990s.

The EGFR not only took into account a patient’s kidney function but also included race as a factor.

Holt said including race prolonged African Americans’ chances of getting on the list.

According to the Organ Procurement and Transplantation Network, that formula led to a systemic underestimation of kidney disease severity.

This delayed transplants years longer for thousands of black patients.

In Holt’s case, he says he should have been listed for a transplant five years earlier.

During that time, he developed heart issues and other complications from dialysis and was forced to retire.

“I do believe I could have avoided some of the heart procedures,” Holt said.

According to the National Kidney Foundation, in 2020, decision-makers started looking at eliminating race from the EGFR kidney formula and other clinical formulas.

“There was a movement in medicine, a broad movement, to get away from race-based calculations,” said Joseph Vassalotti, chief medical officer with the National Kidney Foundation.

When a kidney was available for Holt, multiple hospitals told him the surgery was too risky because of his health.

That’s when his daughter stepped in to offer one of her kidneys and in March of this year, the Pittsburgh VA performed a successful transplant.

“Hat’s off to my daughter because she saw it fit for her dad to receive the kidney,” Holt said.

Dr. Roslyn Pitts-Clark said that policies like these lead to distrust among people in the Black community when it comes to medical care.

However, she said it should not deter them from seeking it.

“We have to remember doctors are not gods. They’re individual people. They make mistakes and we have to be our own best advocate. That is the only way we’re going to get the medical care that we deserve,” Pitts-Clark said.

Holt is now one of at least three Americans who’ve filed a federal lawsuit against multiple hospitals including Emory Healthcare Incorporated and the United Network of Organ sharing, claiming the race-based formula violated his civil rights and caused him serious damage.

In May, the OPTN reported more than 14,000 time modifications were completed for Black kidney transplant patients.

Emory Healthcare Incorporated said in a statement:

“Emory Healthcare is compliant with the current UNOS (United Network for Organ Sharing) policy, which is determined on a national level, for organ allocation. We do not comment on pending litigation.”

The OPTN has declined request for interviews to explain why action was not taken sooner. They cited “ongoing litigation.”