The general public may assume that waitlists for organ transplantation follow a simple tenet: The sicker a patient, the higher their position on the waitlist. But for decades, a formula for kidney transplantation was disadvantaging Black patients. The calculation adjusted these patients’ kidney function scores up, which delayed their placement on the list to receive a transplanted kidney.
The Nicoletti Kidney Transplant Center (NKTC) at Jefferson adopted a race-neutral calculation in 2021. In the summer of 2022, the United Network for Organ Sharing (UNOS), the nonprofit that serves as the nation’s transplant system under contract with the federal government, mandated that all programs use the race-neutral formula. Though positive, that change only affected newly diagnosed patients – not those already in the system.
In January 2023, UNOS announced a policy requiring transplant programs across the country to adjust the wait time for Black patients affected by the legacy formula. And the organization gave programs 12 months to make the adjustments for their patients.
“A one-year timeline isn’t unreasonable given the amount of complexity involved in identifying and qualifying these patients and producing all the supporting documentation,” says transplant surgeon Jaime M. Glorioso, MD. “But at Jefferson, we thought about the situation from the patients’ point of view.”
For some Black patients, the policy would move them up the list by a few months; for others, it would result in several years of additional time being credited. As Dr. Glorioso recalls, “We asked ourselves, ‘If we were these patients and we would be moving from the bottom to the top of the wait list, would we want to wait until November 2023 for the adjustment to be made?’”
Dr. Glorioso says they quickly mobilized a team of 15 people, including administrators and coordinators from the NKTC. They became detectives within the Epic® electronic health records (EHR) system, as well as Care Everywhere®, the application for outside lab results and medical records from other institutions.
“Much, but not all, of the information was digital, so we also had to dig through images of paper charts and reach out to referring nephrologists for additional documentation,” Dr. Glorioso notes.
All told, they identified more than 350 Black patients they needed to communicate with and whose charts needed to be reviewed. As they identified patients eligible for additional time, they worked to complete the related documentation and communication on a weekly basis.
As of this writing, the team has completed the electronic chart review and is still seeking information for a small segment of patients. Most importantly, the NKTC has performed transplants on ten patients who – prior to the new policy – would still be waiting.
“Our kidney transplant program achieved a remarkable milestone,” says Pooja Singh, MD, MBA, Beatrice F. Nicoletti Professor of Medicine and Enterprise Director, Kidney Transplant Services. “Numerous team members went above and beyond their traditional roles to achieve the race-neutral time adjustment. The results serve as a resounding testament to our team’s extraordinary efforts and reflect our commitment to equitable kidney transplant access.”
To learn more about our Kidney Transplant Program, please visit jeffersonhealth.org/kidneytransplant
Jazmin Evans, 29, was diagnosed with kidney disease in 2012 and went on dialysis in 2019. Evans, who is pursuing a doctorate in African-American studies at Temple University, recalls the rush of emotions she felt in the Spring of 2023. That’s when she received the letter from the Nicoletti Kidney Transplant Center informing her that she was being credited with 3.5 years of time on the waiting list.
“At first, I thought, ‘How does something like this happen?!’” she says. “But I’ve studied medical racism, so I do understand how. I just never thought I would be personally affected.”
Thanks to the wait-time adjustment, Evans received a transplanted kidney much more quickly than she expected.
“I just received my new kidney on July 4, 2023,” she says. “From now on, I’ll see Fourth of July fireworks as a celebration of my new organ.”
"Nicoletti Kidney Transplant Center Takes Swift Action to Address Equity in Transplantation,"
Jefferson Surgical Solutions: Vol. 19:
1, Article 1.
Available at: https://jdc.jefferson.edu/jss/vol19/iss1/1