With a proposal now out for public comment, the Minority Affairs and Kidney Transplantation Committees continue to address disparities in transplant equity.
“The patient’s input in transplant policy is valuable - our lived experience with a transplant helps to improve allocations for better transplant implementation.”
Precious McCowan, OPTN Kidney Transplantation Committee member, kidney transplant recipient, donor mother
Our donation and transplant system is the best in the world, in large part because it relies on the input of many voices and perspectives. By coming together to share feedback, the community is able to develop policies that make transplant fair and equitable for all patients. Right now, there is an opportunity to provide feedback on a policy change that will impact kidney patients, and you are invited to add your voice.
You may already know about the estimated glomerular filtration rate (eGFR), or you could be unaware of how some doctors use it in their assessment of their patients. It is a formula used to assess a person’s level of kidney function. Some versions of the calculation include a variable for people identified as Black.
The Organ Procurement and Transplantation Network Kidney Transplantation Committee and Minority Affairs Committee are suggesting changes to the use of race in eGFR. The sponsoring committees have a proposal out for public comment Jan. 27 – March 23, 2022, that aims to establish OPTN requirements for race-neutral eGFR calculations.
These committees are made up of patients and professionals. They would like input from the broader transplant community, including patients and those who care for them, so that any possible changes would incorporate feedback from all stakeholders.
Follow these steps to add your voice
- Read the FAQ and learn how some doctors use a race-based adjustment in a common clinical calculation: Understanding the proposal to require race-neutral eGFR calculations
- Visit the proposal’s public comment page: Establish OPTN Requirement for Race-Neutral eGFR Calculations
- Watch the presentation for patients: Precious McCowan, patient representative on the Kidney Transplantation Committee, has recorded a brief video to share information about the proposal
- Read the policy document
- Add your comments
- Encourage your friends and family to share: Spread the word in your networks and on social media that patient voices matter in transplant policy!
Want more information on the project?
The OPTN’s Reassess Race in eGFR Calculation workgroup began work on this project in 2021. The workgroup includes members of the Minority Affairs Committee and the Kidney Transplantation Committee, as well as additional subject matter experts. Over the spring and summer of 2021, they began evaluating the use of the Black race variable in eGFR as it relates to wait time criteria in kidney allocation. Read more.
“Preventing the Black race coefficient from being used in the eGFR calculation to quantify kidney function is a simple first step towards a more equitable transplant system where Black kidney transplant candidates have access to timely assessment, referral, and earlier accrual of waiting time on the transplant list.”
Paulo Martins, M.D., Ph.D., OPTN Minority Affairs Committee chair
Get involved: Become a UNOS Ambassador
Be an advocate and make a difference. UNOS Ambassadors are passionate about organ donation, allocation and policy development. If you have a direct connection to organ donation or transplantation, you will be part of a community of other waitlist candidates, transplant recipients, donor family members, living donors, caregivers and registered organ donors. Sign up now.
Questions?
If you have any questions about this proposal, please email policy liaison Kelley Poff at [email protected].
