Updates to the Waiting Times for Black Kidney Candidates: What You Need To Know
By Janice F. Whaley, President and CEO of Donor Network West
On December 5, 2022, the Board of Directors of the Organ Procurement and Transplantation Network (OPTN) unanimously approved a new policy that will backdate the waiting time of Black kidney transplant candidates, who were disadvantaged by the previous use of a race-inclusive calculation to estimate their level of kidney function.
While this is a significant step forward in insuring equity in access to transplant opportunities for Blacks, this is another example of how Blacks have been and continue to be unjustly pushed to the back of the line and offered substandard opportunities for a healthy life simply because of the color of our skin. It is also another example that Blacks can use to justify why we do not trust the healthcare system.
Yet in still, while I disagree with the previous and now corrected policy,(and not even to mention decades of HLA matching points that unfairly favored white candidates over black candidates in receiving a kidney offer), that cost many Blacks their lives due to accrual of longer waiting times and ultimately their inability to receive a kidney transplant in time, correcting this wrong is a move in the right direction. As an executive with three decades of experience in the organ donation and transplantation industry, I offer Blacks hope. Hope that with this new policy we are turning a corner for equity in transplantation. I strongly recommend that Blacks continue to advocate for themselves to fight for the quality healthcare we deserve, including the right to be listed on the organ transplant waiting list, receiving waiting time points equitably, but as well and ultimately, and timely, receive an organ transplant that offers a second chance at life.
This new policy is long overdue. If you are a black kidney candidate, it could result in you receiving a positive waiting time modification. Here’s what you need to know.
What is the Organ Procurement and Transplantation Network (OPTN)?
The Organ Procurement and Transplantation Network or OPTN is a network of organ and transplantation organizations (transplant centers and Organ Procurement Organizations) and professionals, along with advocates who are working to improve the U.S. organ transplantation system. Acting through its Board of Directors and committees, OPTN addresses issues of concern in the transplant community and establishes and maintains transplant policies and bylaws that govern the OPTN.
What is the new policy that was approved?
OPTN approved a policy titled, “Modify Waiting Times for Candidates Affected by Race-Inclusive Estimated Glomerular Filtration Rate (eGFR) Calculations”. The new policy mandates that transplant programs submit complete eGFR waiting time modifications for all effected candidates. It requires transplant programs to notify registered kidney candidates before program assessment to make them aware of the organ transplant waiting list and after program assessment to inform them of their eligibility to be placed on the organ transplant waiting list. In addition, all transplant programs must attest to the completion of their kidney waiting list review, submit modifications for all eligible kidney candidates and notify all kidney candidates of any modifications.
What is an Estimated Glomerular Filtration Rate (eGFR) Calculation?
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.
How did the eGFR calculation negatively affect Black kidney candidates?
Some eGFR formulas include a race variable for people identified as Black. The inclusion of the race variable in eGFR calculations has shown to increase eGFR values by as much as 16% for Black or African-American individuals. So Black kidney candidates were receiving estimates stating they had a higher level of kidney function than their non-Black counterparts with the same patient specific variables. This has led to some Black patients being identified with and treated for kidney failure at a much later stage of their disease and also resulted in delayed access to transplantation.
What does the new policy mean for Black kidney candidates?
With the required supporting documentation, some Black kidney candidates will receive a modification to their waiting time if they can show that their kidney health was inaccurately estimated due to a race-inclusive calculation.
How do I know if my kidney health was inaccurately estimated due to a race-inclusive calculation?
All kidney transplant programs are required to identify and notify Black kidney candidates whose current qualifying date was based on use of a race-inclusive eGFR calculation and if a race-neutral eGFR calculation shows that they should have started gaining waiting time for a transplant.
As a Black kidney candidate what should I do?
I encourage all Black kidney candidates to reach out to their transplant center contact to inquire if they in fact have been impacted by the use of race-inclusive calculations and if they may be eligible to receive a waiting time modification.
Janice F. Whaley, President & CEO of Donor Network West, has been a committed advocate for donation for more than a decade. She has held leadership and clinical roles at three other organ procurement organizations across the United States. She has also served in multiple capacities on several national boards and committees related to organ and tissue donation and recovery. Most recently, she was appointed to serve a four-year term as a member of the Secretary of Health and Human Services’ Advisory Council on Transplantation (ACOT). Whaley is a member of the Association for Multicultural Affairs in Transplantation (AMAT) and served as president in 2003. She currently serves as an elected officer on the Board of Directors for AMAT. Whaley is also a member of the North American Association of Transplant Coordinators (NATCO), the American Society of Transplantation (AST), the American Society of Transplant Surgeons (ASTS) and the American Association of Tissue Banking (AATB). She was appointed by the Health Resources and Services Administration (HRSA) to serve as a faculty member for the National Learning Congress (NLC) in 2012. Whaley served as the Representative for OPTN/UNOS Region 4 OPO Committee (2015 -2017).
Donor Network West saves and heals lives by facilitating organ and tissue recovery for transplantation and research. Established in 1987, Donor Network West is designated and certified by the Centers for Medicare and Medicaid Services, accredited by the American Association of Tissue Banks (AATB), is a member of the Organ Donation Alliance and is an official Donate Life organization. Donor Network West is federally designated to serve 45 counties in northern California and northern Nevada, Donor Network West partners with the Department of Motor Vehicles and the state-authorized donor registries to help increase donor registration. For information, visit www.DonorNetworkWest.org and follow us on social media: @mydnwest.