“Medical racism” in kidney treatment, how the calculation that harmed black patients lasted for decades – WFTV

ORLANDO, Fla. — Some doctors and patients say two new federal policies “right a systemic wrong” and improve equity for kidney transplant patients.

▶ WATCH EYWITNESS CHANNEL 9 NEWS

Since the 1990s, calculations that take into account race and disadvantaged black patients have been used to determine when patients may be eligible for a transplant.

Some experts believe that thousands of people have become ill and even died as a result. Channel 9 spent months digging into the rules.

In 2022, the council of federal transplant policymakers took a major step: first, it banned the use of race in important calculations measuring kidney function, and second, it assigned waiting time for a kidney transplant to patients who were negatively impacted by these calculations.

This calculation is known as EGFR (estimated glomerular filtration rate) and is used to assess a patient’s kidney function.

A score of 20 or lower automatically qualifies the patient for the kidney transplant waiting list, but studies showed that the black race variable falsely increased scores by as much as 16 percent.

The Organ Procurement and Transplantation Network (OPTN) sets federal transplant policy and acknowledges that the inclusion of a racial variable harms black patients.

According to an OPTN press release, including race in the calculations “has led to a systemic underestimation of the severity of kidney disease in many black patients.”

Despite the new policy, some believe it won’t be enough to make up for decades of what they consider “medical racism.”

Eric Price was diagnosed with kidney disease as a child. He has since undergone two kidney transplants. However, in late 2023, his second kidney transplant failed.

In January this year, Price was officially listed for a third kidney transplant, but after a shocking discovery was made.

The doctor told him he should have been on the waiting list 6 months earlier.

This is because race was used to calculate EGFR.

Read: The first tropical waves are formed – 9 days before the start of the hurricane season

“I was stunned and upset,” Price told Channel 9.

Price told Channel 9 he is on dialysis again and is intimately familiar with the life-saving equipment.

While waiting for a second kidney, he was forced to undergo regular dialysis.

“I dilated three times a week for ten years. There was a moment when I was a first-year university student. I didn’t have a car and lived in Utah. At 6 a.m. I was riding my bike to dialysis and then home,” Price said.

While Price was excited to learn about the wait time for a third transplant, he wondered how race remained variable for so long and how that affected the 10-year wait for a second kidney.

Laboratories produced race-specific calculations, doctors across the United States used them to refer patients, and transplant programs used them to assess whether a transplant was appropriate. Price wanted to know why no action had been taken sooner.

“People have been suffering for decades. And no one thought about this change?” said Price: “I’ve been waiting for a kidney for a long time. I could have suffered less.”

OPTN declined to be interviewed by Channel 9 to explain why action was not taken sooner. They said it was an “ongoing legal proceeding.”

Meanwhile, hospital systems across the United States had to adapt to new federal regulations.

This includes Central Florida’s only transplant program at the Advent Health Transplant Institute.

Dr. Bobby Nibhanupuda is the medical director of abdominal transplantation at Advent Health.

He explained how these two federal policies impacted the hospital.

Read: We keep Daytona Beach safe: Channel 9 travels exclusively with the police

“We had to go through the entire waiting list of patients, which numbered over 450 people. We also had to go through their medical records that we had,” Nibhanupudy said.

According to Nibhanupuda, this data shows that race-sensitive calculations negatively impacted 58 people on the waiting list.

Each of these 58 patients received a wait time adjustment, which moved them higher on the transplant waiting list.

He said the average wait time for these patients was about three years.

However, the hospital did not conduct an audit of the historical impact of race-sensitive calculations.

“You know, there’s no end to how we can adjust the wait time for any of these people,” Nibhanupudy said. “There are a lot of things that people could change if they could do it earlier. But at least we’re on the right track now.”

According to the federal government, more than 6,000 patients had their waiting times adjusted between January and July 2023.

As for Eric Price, he lives in Utah and is working with transplant doctors there to get his third kidney transplant.

Meanwhile, he is on dialysis five days a week and hooked up to machines that purify his blood for three hours each round.

He lives alone and struggles to cope with both kidney care and a full-time job.

This GoFundMe began to help cover the rising costs of his care and reduce the burden of dialysis.

Read: Criticism is mounting over the recommendation to place a $100 million museum in a rural area

Click here to download our free news, weather and Smart TV apps. Click here to stream Channel 9 Eyewitness News live.