Alva Smith received a letter with surprising news last fall: She was suddenly moving up on the kidney transplant waiting list.

It wasn’t because of a change in her medical status. It was because the test used to evaluate prospective kidney transplant candidates began taking race out of the equation.

The test that doctors historically used to evaluate kidney function levels for possible transplant patients had rated Black patients — such as herself — differently than other patients.

But after adoption of a new race- neutral test, Smith and others who had been inaccurately evaluated in the past found themselves rising through the ranks of those waiting for a possible lifesaving transplant.

For Smith, 54, of Pittsburgh’s North Side, the news produced mixed emotions. She was lucky enough to get her kidney transplant only a few months later, rushing to AHN’s Allegheny General Hospital on Jan. 10 after she got the call about 10 minutes into her workday.

But the significance of the inequity that nearly held her back still sticks with her. She first learned about her kidney problems in 2018 and started the formalities to get on the kidney transplant waiting list in February 2023. Without the change in patient evaluation, she could have been waiting for two or three more years and might have had to go on dialysis.

“It was just wonderful. I can’t complain. I have a lot to be grateful for,” she said, thanking her doctors, friends and family. But she acknowledged, “It really is not fair that I benefitted from something that I should have had anyway. I should have had a fair chance just like everybody else, but because I’m Black, I was held back until 2023. That’s just ridiculous.”

Smith and other Black patients on the kidney transplant waiting list at Western Pennsylvania hospitals were among more than 14,000 transplant candidates across the country to have their schedules adjusted to compensate for past use of the inaccurate, racially biased kidney function test.

Transplant centers nationwide were required in 2022 to stop using the test, which was known for overestimating the kidney function of Black patients through a formula that calculated results for Black and non-Black patients differently.

After moving to a test that did not take the race of the patient into account, those transplant centers started reviewing the rosters of their waiting lists beginning in January 2023 in an effort to right past wrongs.

Reexamining records moved some Black patients up on the wait list to account for the fact that without the biased test, they would have received a kidney sooner.

According to the Associated Press, Black Americans suffer disproportionately from kidney failure and are more than three times more likely than white people to suffer from it. Of the roughly 89,000 people on the kidney transplant waiting list, about 30% are Black.

Nationwide, as of March 8, about 14,300 Black kidney waiting list candidates had their wait times modified, and about 2,800 of them had received deceased donor kidney transplants, according to Anne Paschke, a spokesperson for the United Network for Organ Sharing. UNOS is the private, nonprofit organization that manages the U.S.’s organ transplant system.

Local impacts

At UPMC, 49 of 191 kidney transplants in 2023 involved Black recipients, and at AHN, 22 of 88 such transplants last year were to Black recipients, according to UNOS.

Dr. Amit Tevar, surgical director of the Kidney and Pancreas Transplant Program at UPMC, said the health system has reexamined the cases of 176 Black kidney patients to date.

Half of them saw a change to their wait time on the transplant list, and 19 of those patients have successfully received a transplant.

“Once the race-based bias was removed from the equation, we have seen the clear benefit to our patients,” Tevar said in a prepared statement. “This is an important step toward improving equity in health care.”

At Allegheny Health Network, almost half of the Black patients on its kidney waiting list saw their schedules adjusted, according to Dr. Kalathil Sureshkumar, medical director of the kidney transplant program.

“In fact, a few of them got enough time to go on the top of the list and get a kidney transplant in the last few months,” he said.

Impact of transplant

Back on the North Side, Smith has been recovering from her surgery for the past several months. She wears a mask and is cautious about covid-19 because she is immunocompromised. She will need to take antirejection medications for the rest of her life to maintain the organ. Regularly scheduled doctor appointments have become part of her routine.

She returned to work in March and currently lives with her daughter, Myka.

Smith considers herself fortunate and is grateful for the help of her support system. She thinks a lot about other patients who may not have received the same benefits.

“I was one of the lucky ones, but there are many, many people who weren’t so lucky. You have to recognize that,” she said. “This isn’t exactly righted for everyone. There are people who have suffered, people who their family members have died. This is far from being right. There should be some type of compensation for them.”

Diversifying donors

Kidney transplants are limited by the number of donated organs available, Sureshkumar said.

“We don’t have enough kidneys,” he said. “Organ shortage is the main problem. People have to wait longer.”

Katelynn Metz, spokeswoman for CORE — the Center for Organ Recovery & Education — emphasized the importance of increasing the diversity of the organ donor pool.

“The greater diversity of our organ donors means a better chance of transplant for everyone on the list,” she said. “Although we don’t match donors and recipients based on race, just because of the way genetics work, people of the same ethnic backgrounds often end up being a match.”

Many minority communities, especially Black communities, often distrust the medical system because of a legacy and continuing reality of mistreatment and racism from health care authorities, Metz said. Health care providers and transplant officials have work to bridge the gap and restore trust, she said.

“You’ve got a group where we need more to become registered donors, but they also are — for a lot of reasons — the least likely to become donors,” Metz said. “It’s like a problem that keeps compounding itself.”

While the recipient side of organ transplants makes changes to formulas and adjusts wait times, the donor side hopes to reach out to minority communities to encourage donation.

“Being able to focus more on building the trust of minority communities so that we could have a greater diversity in the donor population is something that would benefit everyone,” Metz said.

The road ahead

The recent formula change addressed only kidney function, but nephrology, or kidney medicine, is not the only medical sector that is addressing racism and inequity.

Dr. Amaka Eneanya, chief transformation officer at Emory Healthcare, is a nephrologist who sits on the Organ Procurement and Transplantation Network Minority Affairs Committee.

Other medical specialties, including OBGYN care, pediatrics and pulmonary health, also recently have removed race from algorithms and equations used in their fields, she said.

Because race is a social construct, Eneanya said, it is not right to assume that it will accurately factor into medical equations. It can help to consider race and socioeconomic status and allocate resources to communities that may need them, but race cannot predict genetic predisposition for a disease.

“When you’re taking it at the individual level and using it in a medical algorithm, that’s when it becomes inaccurate,” she said. “The assumption is that all racial groups are biologically the same. That is problematic.”

The medical field is increasingly moving toward using genetic testing to guide therapy as opposed to race, she said.

“I think for too long people have used race as a proxy for genetics,” she said.

Reactions to the kidney formula change have been mixed, she said, but Eneanya sees the move as progress to fix past inaccurate assumptions.

“Something was done in the past that was not fair, that was not ethically sound,” she said. “This is a way to right that wrong.”

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