Committees continue work addressing disparities in transplant equity
Updated Oct. 5, 2021: Public comment on the Minority Affairs and Kidney Transplantation Committees’ request for feedback closed Sept. 30, 2021. The committees are reviewing the feedback received and will be developing a proposal to go out for public comment in January 2022. Learn more about how we develop policy.
A commitment to equity
Earlier this year, the Organ Procurement and Transplantation Network formed a workgroup to study the use and impact of a race-based adjustment to a common clinical calculation used by many kidney transplant programs – the estimated glomerular filtration rate (eGFR). Ensuring equity in access is a strategic goal of UNOS and the OPTN, and the eGFR project intends to improve equity by analyzing racial bias.
“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
Over the spring and summer of 2021, the Reassess Race in eGFR Calculation Workgroup began evaluating the use of the Black race variable in eGFR as it relates to wait time criteria in kidney allocation. The workgroup includes members of the Minority Affairs Committee and the Kidney Transplantation Committee, as well as additional subject matter experts.
Now, the workgroup is requesting feedback on their approach to changes in the use of eGFR, and wants kidney patients to understand the role eGFR can play in access to transplant.
The goal of increasing access to transplant
“Preventing the Black race coefficient from being used in the GFR 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.,” says Paulo Martins, M.D., Ph.D, chair of the Minority Affairs Committee and a member of the workgroup. “This change would support increased transplant access and better outcomes for Black kidney transplant patients.”
“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
Precious McCowan, a kidney disease patient and advocate who serves on the Kidney Transplantation Committee and who is also a part of the workgroup, explains that the Black race variable has served as a barrier for African Americans to be listed for a kidney transplant.
“I have witnessed many of my peers, challenged with kidney disease, turned down for transplantation listing because of the eGFR calculation,” says McCowan, a transplant recipient herself as well as a donor mother. “These individuals have just given up on receiving a transplant.”
McCowan describes the eGFR workgroup as a “diverse community of healthcare professionals and patients, working diligently to eliminate this barrier for self-identified African-American patients who want an opportunity to be considered for a kidney transplant. However, Race is not a biological concept but a social construct.”
The committees are now asking for kidney patients and those who care for them to provide input on their joint-sponsored Request for Feedback, Reassess Inclusion of Race in Estimated Glomerular Filtration Rate (eGFR) Equation. The request for feedback opened for public comment on Aug. 3, along with 14 other proposals going out for comment in the 2021 summer public comment cycle.
The importance of patient feedback
With more than 90,000 people waiting for a kidney transplant in the U.S., patient feedback is important for any future policy development process on reassessing race in eGFR calculations.
McCowan wants other patients to know that public comment provides a platform for their voice to be heard, and that it’s an opportunity to weigh in on policies and developments that impact how healthcare is provided.
“Receiving a transplant is a delicate gift that requires a collaborative healthcare team built around shared decision-making with the patient in the center of their care,” says McCowan. “The patient’s input in transplant policy is valuable – our lived experience with a transplant helps to improve allocations for better transplant implementation.”
I’m a patient – what do I need to know before I provide feedback?
If you are a kidney patient, you may already know about eGFR, or you may be unaware of how physicians use it in their assessment of patients. Find information about eGFR and the committees’ Request for Feedback below.
What is eGFR?
The eGFR measures how slowly or quickly kidneys remove waste products from the blood and determines the severity of a patient’s kidney disease.
Did the OPTN develop eGFR Calculations?
No, neither the OPTN nor UNOS developed eGFR calculations. However, OPTN policy utilizes eGFR values to determine when a kidney candidate will qualify to accrue waiting time on the transplant waiting list.
What is the Black race variable in eGFR?
One of the most widely used formulas for measuring eGFR includes a Black race variable. This formula is the Chronic Kidney Disease Epidemiology Collaboration (CKD-EPI).
The CKD-EPI can incorporate as many as four patient-specific variables:
- Creatinine concentration
- Race (Black/Not Black)
The Black race variable was established from study results which showed that Black patients had higher creatinine concentrations and therefore better kidney function. In order to adjust for these differences, the Black race variable automatically increases all Black patients’ eGFR values.
What are potential implications of the race variable?
Recent research suggests that use of the Black race variable could actually disadvantage Black patients with chronic kidney disease (CKD). There are also questions about the design of the original studies. Read the committees’ co-sponsored Request for Feedback for more information.
- This research suggests that use of the Black race variable in the CKD- EPI formula has the potential to overestimate Black patients’ kidney function by as much as 16%.
- Overestimated eGFR values could inaccurately reflect a patients’ stage of CKD, representing them as less sick than they actually are.
- Potential impacts of the race variable include delayed referral to transplantation and delayed initiation of qualified waiting time.
- Impacts also include overall worse management of CKD and worse outcomes for Black patients.
What does an example of this look like?
In this broad example, candidate A and candidate B are identical for all patient-specific variables except for race.
For adult candidates, eGFR values must be less than or equal to 20 mL/min to begin accruing waiting time.
|Factors||Candidate A||Candidate B|
|Serum Creatinine (mg/dL)||3.3||3.3|
As a result of the Black race variable, the non-Black patient B would qualify to accrue waiting time, while the Black candidate A would not.
What does current policy say about eGFR?
In current OPTN policy, eGFR values are used as qualifying thresholds for adult kidney candidates to access waiting time. However, OPTN policy does not specify which eGFR calculation must be used.
Patients older than 18 years old have to fulfill one of the following requirements before they can start accruing waiting time:
- Receive regularly administered dialysis for end-stage renal disease (ESRD)
- Have an eGFR of less than or equal to 20 mL/min
A kidney transplant candidate may be registered to the transplant waiting list with any eGFR, but the candidate will not begin accruing waiting time until they meet one of the above qualifications.
Why is this important in terms of equity?
The amount of waiting time accrued by a kidney transplant candidate is critical, as it plays a substantial role in the prioritization of kidney offers.
Because current OPTN policy does not specify which eGFR variables or formulas may or may not be used, the various formulas that transplant programs use to accrue waiting time are permitted to include or exclude the Black race variable.
What are other issues with the race variable in eGFR?
EGFR calculations rely on a binary approach to race. When the race variable is used in formulas, eGFR calculators only offer two response options: “Black” or “Not Black.”
These options do not include a designation for mixed race or multi-racial individuals, and do not account for the existing genetic diversity within the Black population. The concept of race is a social construct and an unreliable proxy for genetic difference, therefore not a biological marker or clinical measure.
Participate in Public Comment
Your input is important, because the work isn’t done yet.
The committees are asking for patient feedback to assist in the development of a future proposal that aims to provide more equity in access to transplantation for Black patients.
- Go to the Request for Feedback’s public comment page
- Watch the video presentation that provides an overview
- Review the Request for Feedback document
- Provide your feedback in the comment section
In particular, your feedback is sought on the following
- As a patient, do you support this prospective proposal? Why or why not?
- What potential unintended consequences should be considered during this proposal’s development?
If you have any questions about this proposal, please email policy liaison Kelley Poff at Kelley.Poff@unos.org.