Black Candidates Move Up Kidney Transplant Waiting List

More than half of Black kidney transplant candidates have already benefited from a new race-neutral policy for estimating kidney function, according to recent national data.
Between January 5, 2023, and August 9, 2024, 16,258 Black kidney transplant candidates had an average of 2.3 years added to their wait time, according to the latest figures from the Organ Procurement and Transplantation Network (OPTN). Over a quarter of these candidates received a deceased donor kidney transplant.
“This had a significant impact on the timeliness of transplant for our African American patients,” said Kiran Dhanireddy, MD, vice president and chief of the Tampa General Hospital’s Transplant Institute in Tampa, Florida, which has one of the largest kidney transplant programs in the country.
What the New Policy Entails
In July 2022, the OPTN banned transplant programs from using race-adjusted estimated glomerular filtration rate (eGFR), a measure of kidney function, to determine when and if someone is placed on the kidney transplant waiting list. From then on, programs could use only race-neutral formulas.
Adjusting eGFR for race was based on the flawed assumption that Black people have more muscle mass. This not only made Black patients’ kidney function appear higher than it actually was but also potentially delayed their placement on the waiting list.
Addressing these past mistakes required figuring out what to do for Black patients already on the list. Several months later, the OPTN ruled that, beginning in January 2023, transplant programs had 1 year to review patients’ medical records to find those whose waiting time had been affected by the race-based formula and apply to the OPTN to modify it. Centers must continue the review process as they register new kidney transplant candidates.
Hard Work Produces an Immediate Impact
“We put a lot of resources into helping patients get time modification,” said Dhanireddy.
The Transplant Institute has 800-850 patients on the kidney transplant waiting list at any one time. In the first year, staff identified 236 Black patients on the list and determined that 138 were eligible for modification. These patients were given, on average, an additional 619 days on the waiting list, and as of the end of last year, 39 had received transplants.
A similar story played out at the Brody School of Medicine at East Carolina University in Greenville, North Carolina.
“I have to give a lot of credit to one of our nurse managers who was highly motivated and went through our entire wait list,” said Margaret Romine, MD, a transplant surgeon at this site.
Of the more than 500 patients at Brody on the kidney transplant list, the nurse manager identified 371 Black candidates, of whom 142 were eligible to receive an average additional waiting time of 30 months.
“It was amazing,” said Romine. “Thirty-one of those 142 patients were transplanted very quickly, within the first few months of us giving them their time.”
Identifying candidates eligible for wait-list modification, however, can be a difficult process. First, transplant centers must find eGFR labs from before the date the patients were registered for the transplant waiting list. A value < 20 allows access to the list.
“When a patient has a lab report that says kidney function, because they are Black, is above 20, but it is below 20 using the race-neutral formula, we print that out,” said Martha Pavlakis, MD, a member of the OPTN board and the program director for solid organ transplant at Beth Israel Deaconess Medical Center in Boston. The patient’s wait time is then backdated to when blood was drawn for that lab, subject to OPTN approval.
Finding those lab reports is not always easy because either they are located in electronic health records not accessible to the transplant program or the patient or they never existed in the first place. This may be an important reason why the national OPTN data show that many Black kidney patients did not receive modification.
At East Carolina University, finding labs from patients’ earlier care at other institutions was not a problem, said Romine. “Fortunately for our program, one of the great things about North Carolina is that there is sharing of the electronic medical record between different hospitals.”
Nevertheless, 62% of the program’s Black kidney transplant candidates were not able to receive additional time on the waiting list.
“We think there is a patient population not getting access to good kidney care before getting on dialysis and getting referred for transplant,” said Romine. “If they’re not seeing a physician, then they’re not going to have those pre-dialysis [eGFR] numbers in the record.” This illustrates the bigger problem of access to healthcare in general, she said.
Addressing Patient Confusion
Last year, after the policy change went into effect, the OPTN required transplant hospitals to notify all their patients on the kidney transplant waiting list, no matter their race, of the modification process. It was not always easy to explain.
The conversations are “disorienting” for Black patients, who are learning that they had been treated inequitably for a long time, said Dhanireddy. A good portion of these conversations was spent explaining the original research behind race-based labs, discussing recent literature recommending a more equitable approach, and urging patients not to lose trust in the system.
“There was definitely some confusion,” said Pavlakis. Although her program sent letters to those on the kidney transplant waiting list using straightforward language, Pavlakis said, “I still spoke to many patients of all races who only had a vague sense” of the new policy.
Occasionally, a patient who was not Black would ask her how the process affected them, she said.
“That is a legitimate question, but most people seem to understand the bottom line, which is a system that is unfair to a group of patients is in some ways unfair to everyone.”
As Disparities Continue, So Do Efforts to Address Them
At a June meeting of the OPTN, it was also decided to remove race from the Kidney Donor Profile Index (KDPI), a mathematical formula used to estimate the quality of a donated kidney.
Previously, the KDPI included a question about race. Kidneys from Black donors were graded as having poorer organ function than those from White donors. The change has the potential to increase the number of organs available for the nearly 90,000 people waiting for a kidney transplant.
“The revised formula will better reflect the likelihood of graft failure for kidneys from deceased donors, and appropriately reflects the fact that race is a social, and not a biological, construct,” Deidra C. Crews, MD, president of the American Society of Nephrology, said shortly after the decision.
As far as the time modifications for Black transplant candidates, Dhanireddy said it is just a first step toward “leveling the playing field a bit for patients who had already made it on the wait list.”
“But we know, from our internal data and from national data, that African American patients face different and greater challenges at every step in the transplant evaluation process,” Dhanireddy said. That process starts with a doctor or dialysis center referring the patient for transplant and ends with the transplant center evaluating whether the patient would make a good candidate.
Dhanireddy’s institute is participating in a National Institutes of Health grant, in collaboration with Northwestern University, Evanston, Illinois, to remove barriers that derail Black patients’ candidacies.
A specialized team “is providing care to African American patients and removing some of those barriers, whether they be social, cultural, or educational,” said Dhanireddy. “A critical factor is that the patients are cared for by a team that shares their life experiences and perspective because those team members are African American as well,” including its leader, Anthony Watkins, MD, the institute’s surgical director of the kidney transplant program.
Jesse Schold, PhD, a professor of medicine and a transplant researcher at the University of Colorado Anschutz Medical Campus in Aurora, Colorado, said the OPTN modification process should evolve “to include other populations that have had challenges in getting access to care prior to transplantation.” These could be patients of lower socioeconomic status, with poor health insurance, and perhaps living in rural areas.
Pavlakis, the OPTN board member, said she hoped the modification program for Black kidney transplant candidates can serve as a model of sorts for addressing these other disparities.
“It is the work of the OPTN and the country in general to continue to reduce disparities in access to care of all sorts, but particularly lifesaving care like organ transplantation.”
Barbara Mantel is an award-winning reporter and a core topic leader at the Association of Health Care Journalists.
 
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