Transplant programs to begin contacting patients in 2023
A new policy action now in effect means some Black kidney candidates will be eligible to receive waiting time modifications and increase their waiting times (and potentially their prioritization for transplant).
The action, which took effect Jan. 5, 2023, was unanimously approved by the Board of Directors of the Organ Procurement and Transplantation Network (OPTN) at its Dec. 5 meeting, and is intended to backdate the waiting times of those Black kidney transplant candidates who were disadvantaged by previous use of a race-inclusive calculation to estimate their level of kidney function. The calculation is the estimated glomerular filtration rate (eGFR).
“This action underscores our commitment to equity in access to transplantation for all candidates,” said Jerry McCauley, M.D., M.P.H., president of the board. “We and many other organizations have now prohibited the use of a race-based calculation that has unfairly delayed care for many Black patients with kidney failure. Waiting time for a transplant is a major factor in the priority that kidney candidates receive. Thus, we are acting along with kidney transplant programs nationwide to ensure that any candidates known to have been disadvantaged by a race-inclusive GFR calculation will receive all the waiting time credit for which they qualify.”
“So many African Americans have been affected by the use of race-inclusive calculations, and have become very ill or have died waiting for the opportunity to list for a kidney transplant,” says Precious McCowan, a kidney recipient and donor mother who serves on the OPTN Kidney Transplantation Committee, which developed and co-sponsored the policy with the OPTN Minority Affairs Committee. “With the new policy change, I envision more African Americans having an equal opportunity to list for kidney transplantation.”
Transplant programs must comply with the policy by Jan. 3, 2024. Read more about the requirements in the board briefing paper and the policy notice.
Race-inclusive formulas previously overestimated kidney function of Black candidates
The glomerular filtration rate (GFR) measures how quickly a person’s kidneys remove a waste product called creatinine from the blood. The estimated GFR (eGFR) value is one of the criteria used for transplant candidates to begin accruing waiting time credit for transplant priority, and it can be either measured directly or estimated using various formulas.
Some eGFR formulas include a race variable for people identified as Black, but many researchers and medical societies have found this can inaccurately estimate a higher level of kidney function for Black individuals than for non-Black individuals having otherwise the same patient-specific variables. This has caused some Black patients to be identified with and treated for kidney failure at a much later stage of their disease, and delayed their access to transplantation. The use of race-inclusive eGFR calculations for purposes of transplant has been prohibited since July 27, 2022. Read more about race and eGFR.
What will the board action mean for patients?
As a result of the new policy action, and with the required supporting documentation, some Black patients will receive modifications to their waiting time if can be shown their kidney health was inaccurately estimated due to a race-inclusive calculation.
All kidney transplant programs are required to identify those Black kidney candidates whose current qualifying date was based on the use of a race-inclusive eGFR calculation, and to determine whether a race-neutral eGFR calculation shows they should have qualified sooner to start gaining waiting time for a transplant. Programs must then apply to the OPTN for a waiting time modification for such candidates.
“Correcting a patient’s waiting time means an opportunity for a better quality of life and more time with loved ones,” says McCowan, who worked to amplify her voice as a patient advocate during the policy development process. “I wanted to help ensure this policy would be fair and just for every African American affected by the old policy.”
The removal of race variables from eGFR calculations has been broadly supported by institutions including the National Academies of Sciences, Engineering and Medicine, as well as a joint task force of the American Society of Nephrology (ASN) and the National Kidney Foundation (NKF). Improving equity in access to transplant opportunities for patients is a strategic goal.
Patient notifications to occur in 2023
In early 2023, kidney transplant programs will start to contact all of their currently registered kidney transplant candidates about the initiative. After the programs request modifications for potentially affected candidates, they will again contact each candidate to let them know whether they qualify for a waiting time adjustment. Once the programs complete those steps, they will document their completion with the OPTN. Programs are required to complete the process by Jan. 3, 2024, although modifications are permitted at any time in the future.
Read more about the requirements in the Jan. 5 implementation notice.
Resources are in development for patients and professionals. FAQs will be available soon on the OPTN website. Professional education will be available soon on UNOS Connect.
- Patients should contact their transplant hospitals for more information about their status
- For additional questions, call the Patient Services line toll-free at 1-888-894-6361. Patient Services is available Monday – Friday, 8:30 a.m.– 5 p.m (ET)
- For policy questions, please contact [email protected]