Comments

Calvin Henry | 03/19/2025

About 15% of the entire UNOS waiting list (all Black persons) has received waiting time modifications as a result of recent policy, including the Modifications to Waiting Time for eGFR impacted candidates, with an average of 1.7 years returned to them. Those are MASSIVE numbers and do not at all align with the past characterizations of unimportance by a concerningly significant number of the OPTN membership. During the 2022 comment period, I strongly advocated for the adjustments that are being proposed in this policy update and believed they should have been included at that time because of readily apparent inconsistencies in projected approach, questions of willingness to equitably implement the policy across programs, and concerns of transparency for the patient left wondering if the program would do the right thing.

Those concerns haven’t gone away for most patients, including those needing a transplant today so I, again, fully support swift implementation of this updated policy, support the next step that will provide an immediate and direct effect on a large proportion of the kidney waiting list, and hope that affected individuals who may have been excluded within the group of 6000+ that were reported as not qualifying, and are still alive, may have their status resolved.

If not explicitly stated in this proposal, I would recommended that: 1) As part of the requirement, if granted additional wait time, the amount of time granted should also be communicated to the patient. 2) The notification that the modification request was completed and UNOS decision made can be sent at the same time for efficiency, but I would recommended that the request be sent on their behalf within the first 30 days of listing at the program. Time is a factor that we all know as patients, candidates, families, and care partners.

I know there are many areas ripe for reducing burden and I trust that the fair comparison is always made between reducing burden and patient safety/quality impact. Based on the measurement above, I believe added burden outweighs the ability to directly save lives and engender trust in the OPTN when this policy is implemented. As an added thought, I believe the committee, and OPTN at large, should begin to consider how transformational technology solutions can automate areas where burden is in impact today. Using this proposed policy update as an example, with basic technology, a Black kidney patient who is registered could automatically have sources for eGFR searched on his behalf and other functions, such as automated review and issue of notification, completed, reducing burden. Perhaps delving into how the OPTN/Final Rule can help lead to this type of innovation is a conversation we can all collaborate on.

Colleen O'Donnell Flores | 03/19/2025

I am a Director of Quality of an adult program that performs over 200 kidney transplants a year. I am very active in our program’s response to the original policy change passed in 2022, which also involves the pre-transplant team led, by our medical director.
I would expect that any adult program that has been following the existing OPTN policy, already has much of suggested documentation that is in the proposed 3.7.D.i (Notification Requirement) and 3.7.D.ii (Determination of Eligible Candidates). A program simply cannot meet the existing policy, without this rigor. CMS Conditions of Participation for Transplant Programs also requires notification of status changes to waitlisted kidney patients.
The primary challenge lies in the retrospective documentation requirement for all candidates registered on or after January 4, 2024. While we will adhere to the final policy whatever it may be, we suggest an attestation process for this retrospective documentation, coupled with prospective notification for patients going forward. This would significantly reduce administrative burden, without compromising compliance.
Our program's response to this policy, including the need for greater data transparency regarding its impact and improved patient education materials, is the subject of an accepted abstract for an upcoming national conference. We continue to see the impact of this policy with newly referred patients. We respectfully ask for a larger forum to collaborate with our peers, and other key stakeholders in sharing lessons learned, education materials and data. Thank you for working on this.

Infinite Legacy | 03/19/2025

Infinite Legacy fully supports the proposal and is pleased to provide the following comments and recommendations. We fully support any efforts to create more equitable processes throughout the donation and transplant system. We note that any obligation to report race should require that the patient supply or confirm this information, where possible.
Infinite Legacy is committed to ensuring that historically marginalized communities, particularly Black and Brown populations, have equitable access to organ transplantation. Through our grassroots initiative, The Decision Project, we engage directly with communities to educate, empower, and build trust in the transplant system. While we support the policy’s goal of increasing transparency and ensuring all kidney candidates are assessed fairly, we believe that meaningful community outreach must complement these changes. It is essential to provide culturally competent education about eGFR adjustments, ensuring that patients not only receive notifications but fully understand their eligibility for waiting time modifications. Without direct engagement, trust gaps in the healthcare system will persist, limiting the effectiveness of these policy changes.

OPTN Patient Affairs Committee | 03/19/2025

The OPTN Patient Affairs Committee appreciates the efforts of the OPTN Minority Affairs Committee on this proposal, which received broad support from committee members. Many agreed on the importance of addressing historical inequities in eGFR calculations. While the majority supported the new requirements, some members raised questions about the modification request process and the possibility of automatic adjustments. Concerns were expressed about the fairness of not retroactively applying the changes to candidates registered after January 4, 2024. Clear communication to patients regarding their eligibility and necessary documentation was strongly emphasized.

Members suggested prioritizing outreach efforts to African American patients and providing clear instructions on how they can assist their transplant programs in determining eligibility. Consistent and transparent information delivery was called for to ensure all patients are informed and to avoid delays. Additionally, members recommended including this information during patient evaluations and consent discussions.

There were concerns that the policy language would only require transplant hospitals to develop a protocol, rather than implementing a standardized process for documentation review. This could lead to variability across transplant programs, so members recommended a standardized approach to ensure consistency. Diverse notification methods were emphasized to reach patients effectively and promote transparency for individuals on the waiting list. Publicizing this information on the OPTN website and ensuring patients understand the changes was highlighted.

Overall, the proposal was seen as an important step toward correcting institutional biases in eGFR calculations, but additional clarity and support mechanisms for patients and programs were recommended.

View attachment from OPTN Patient Affairs Committee

Region 10 | 03/19/2025

Sentiment: 3 strongly support, 8 support, 1 neutral/abstain, 0 oppose, 0 strongly oppose

Comments: This was not discussed during the meeting, but attendees were able to submit comments with their sentiment. The proposed policy update is seen as a valuable step toward enhancing equity. However, concerns have been raised about the lack of discussion on the topic and the administrative burden it places on transplant centers. A broader review of the policy’s impact on different groups and potential modifications should be considered. While the update appropriately refines previous policy language, it may increase the workload for centers responsible for notifying patients. The flexibility in notification methods is viewed as a positive aspect. Additionally, there is a need for stricter guidelines on acceptable practices for eGFR modifications to ensure consistency and prevent incorrect applications.

University of California San Diego Medical Center | 03/19/2025

This policy discriminates against all other races/ethnicities. The implementation will right one problem at the expense of everyone else who does not identify with that particular race/ethnicity. There is no legal or definitive way to accurately prove/verify pt's race/ethnicity. Anyone can falsely identify a race/ethnicity to improperly advance their spot on the waitlist because of this. Additionally:

1) If African American patients have historical race-inclusive qualifying and non-qualifying GFRs (e.g., during a hospitalization, AA GFR > 20 and AA GFR
2) Is there any means of protection against abuse of this policy (e.g., a patient falsely claims they identify as African American so as to gain additional wait time)? Should ethnicity be verified using other sources? Should programs be provided guidance regarding verbiage to be used that might help reduce risk of abuse?

3) This policy has already resulted in a significantly increased work and burden on this program (e.g., several hours spent on each African American patient). I am concerned about this continued burden and an increased burden, especially with the retroactive date of 1/4/24. Due to the nature of transplant and high volume, every task comes at the expense of other tasks, which can lead to delays in patients evaluation, listing, transplants, etc.). Are there any ways for this burden to be decreased so that the program can most effectively care for patients? Reconsider the retro date and instead choose a future date for best use of limited resources? Limit transplant center review of labs to those available in the chart only?

American Society of Transplant Surgeons | 03/19/2025

Attachment.

View attachment from American Society of Transplant Surgeons

Region 6 | 03/19/2025

Sentiment: 1 strongly support, 14 support, 2 neutral/abstain, 0 oppose, 0 strongly oppose

Comments: This was not discussed during the meeting, but attendees were able to submit comments with their sentiment. Attendees commented that they were supportive of this policy but were opposed to implementing a retroactive requirement obligating transplant programs to meet new documentation standards for candidates registered on the waiting list on or after January 4, 2024, due to the administrative burden. 

OPTN Kidney Transplantation Committee | 03/19/2025

The Kidney Transplantation Committee thanks the Minority Affairs Committee (MAC) for their hard work and dedication to this important project. The Committee strongly supports the underlying eGFR modification policy and the MAC’s continued efforts to ensure proper patient notification. The Committee also acknowledges that many transplant programs have completed notification and wait time modifications for patients under the previous eGFR policy guidance and is concerned the proposal may impose unnecessary documentation and notification burden, particularly with regard to retroactive notifications. The Committee is interested in understanding the number of patients who have not received proper notification under previous policy to better assess the benefit to patients that will be achieved by the new requirements.

National Kidney Foundation | 03/19/2025

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View attachment from National Kidney Foundation

The Association for Multicultural Affairs in Transplantation | 03/18/2025

The Association for Multicultural Affairs in Transplantation (AMAT) is dedicated to promoting equity, diversity, and inclusion in organ donation and transplantation. Our mission is to eliminate disparities and improve access to transplant opportunities for historically underserved communities.

We appreciate the opportunity to provide feedback on the OPTN Monitor Ongoing eGFR Modification Policy Requirements Proposal, as we believe that ensuring transparency and accountability in transplant policies is essential to fostering equitable access to lifesaving treatments.

Support for the Proposed Policy Updates:

AMAT strongly supports the ongoing efforts to eliminate race-inclusive eGFR calculations and improve waiting time modifications for kidney candidates. The proposed updates to OPTN Policy 3.7.D are a necessary step toward ensuring that all transplant candidates, particularly those from marginalized communities, receive equitable and transparent consideration for placement on the waitlist.

We commend the OPTN Minority Affairs Committee (MAC) for identifying key areas where transplant programs must implement more structured policies, including:

• Clear documentation protocols for confirming candidate race, fulfilling notification requirements, and seeking supporting documentation for eGFR waiting time modifications.

• Stronger notification standards ensuring that all kidney candidates are informed of their eligibility for a waiting time modification and the outcome of any submitted modification request.

• Retrospective application of notification requirements to all candidates registered on or after January 4, 2024, to ensure consistency and fairness in policy implementation.

• Improved compliance monitoring to ensure transplant programs uphold these requirements effectively.

AMAT’s Recommendations to Strengthen the Proposal:

While we support the proposed changes, we offer the following recommendations to further enhance the policy and ensure that its implementation effectively serves diverse communities:

1. Enhancing Transparency and Patient Communication:

We strongly recommend that transplant programs adopt culturally appropriate, multilingual communication strategies to notify candidates about their eligibility and waiting time modifications. Beyond standard written letters, programs should incorporate digital, verbal, and community-based outreach methods to ensure that patients fully understand their status and rights.

2. Standardizing Outreach and Notification Efforts:

While the policy requires transplant programs to notify kidney candidates, there are no standardized requirements on how notifications should be conducted.

We urge OPTN to:

Develop clear guidelines on best practices for patient outreach.

Provide standardized notification templates and educational materials to ensure consistency across transplant centers.

3. Addressing the Administrative Burden on Transplant Programs

We recognize concerns about the retroactive application of new notification requirements. However, ensuring that all candidates registered on or after January 4, 2024, receive these updates is a matter of fairness and equity that outweighs the potential administrative strain.

To support programs in this effort, we recommend that OPTN:

Provide technical assistance and training for transplant centers.

Consider a phased implementation approach to ease the burden on transplant programs while maintaining the integrity of the policy.

4. Strengthening Data Collection and Public Reporting:

OPTN should implement a formal mechanism to track and publicly report data on the number of candidates notified and the outcomes of waiting time modification requests. Data should be disaggregated by race, ethnicity, and socioeconomic status to assess the impact of this policy in reducing disparities in access to kidney transplantation.

Any requirements to report race should, whenever possible, be validated or confirmed by the patient to ensure accuracy.

Conclusion:

AMAT believes that these policy updates are a critical step in addressing racial disparities in kidney transplantation, and we appreciate OPTN’s leadership in making these changes. By implementing clearer notification standards, improving patient communication, and ensuring robust compliance monitoring, this policy will help create a more equitable and just transplant system.

We look forward to continued collaboration with OPTN and other stakeholders to ensure that these policies are effectively implemented and truly benefit the communities they are meant to protect.

Region 9 | 03/18/2025

Sentiment:  1 strongly support, 4 support, 4 neutral/abstain, 1 oppose, 0 strongly oppose 

This was not presented at the regional meeting, but members were able to submit comments. A member expressed strong support for this work, acknowledging that it may require additional administrative burden for transplant centers, but it was a step in ensuring a system that treats all patients equally. An attendee shared concern about retroactively notifying waitlisted patients who do not qualify for an eGFR modification, but did not elaborate on their concerns.  

OPTN Membership and Professional Standards Committee | 03/18/2025

The Membership and Professional Standards Committee (MPSC) appreciates the work of the MAC in responding to this referral and developing this proposal. The MPSC was overall in support of this proposal and provided some comments and suggestions for consideration.

The MPSC discussed the proposed written protocol and documentation requirements and remarked on the flexibility given to transplant programs regarding how to perform and document these processes, from EMR notes to written letters and documented conversations. Several members expressed support for the less proscriptive nature of the proposal because it allows programs to have autonomy and ownership in the process to make it work best for them and their patients, while also enabling the monitoring and oversight that was requested by the MPSC. It was suggested that the sharing of best practices could be beneficial for members and for patients, and that the Patient Affairs Committee should be engaged on this front if they have not already.

There were questions regarding the purpose of the confirmation of candidate race requirement in the proposal, given that it is already self-reported data. One member shared their experience during previous eGFR candidate notification efforts at their hospital, where every candidate received communications that included their documented race, giving them an opportunity to identify discrepancies in their records and highlighting the importance of such a requirement.

The Chair suggested adding a 30-day time frame for reporting the third notification requirement (the outcome notification) to the patient, which would begin after the program was notified by the OPTN of the outcome of the waiting time modification request. This would promote system transparency for patients and would enable more specific compliance monitoring to take place. Several other MPSC members were supportive of that recommendation and felt that the 30-day time frame was reasonable from a process perspective.

The MPSC also discussed the application of updated, more explicit notification requirements for all candidates registered on or after January 4, 2024. The consensus from several members was not in favor of this requirement, and it was noted that from an MPSC perspective, it would be incredibly difficult to enforce that operationally. Additionally, the timeframe of the retrospective notification requirements is only going to grow as the policy process for this proposal continues, increasing the overall burden. A member shared that the new requirements for a written protocol and documentation seem to be the most important part of the proposal for patient access, given that the programs the MPSC worked with in 2024 mostly needed intervention due to a lack of understanding. OPTN site surveys will be able to ensure that institutions understand the process and their responsibilities, which safeguards patient access moving forward more effectively than a retrospective notification. Another member noted that this retrospective notification process would be burdensome on transplant programs and that it does not set a good precedent. Finally, a member noted that if this requirement is implemented, bundling these notifications with other patient interactions such as informed consent discussions could be an efficient method to handle these requirements.

The MPSC is appreciative of the MAC’s effort on this proposal and their consideration in addressing the MPSC’s concerns as outlined in the initial referral. 

Region 11 | 03/18/2025

Sentiment: 7 strongly support, 12 support, 2 neutral/abstain, 1 oppose, 1 strongly oppose

Comments: Region 11 supports this proposal. One member inquired about methods to verify candidate race beyond self-reporting. Another member questioned whether pre-emptive status should be considered when qualifying eGFR is provided with referrals to transplant centers despite current eGFR being greater than 20. Multiple members commented that pediatric candidates should be excluded from this policy since pediatric eGFR calculations do not use race-based coefficients. Another member addressed the significant administrative burden placed on transplant programs, suggesting implementation should have coincided with the policy change, and noting that retrospective notification may cause confusion for recipients and their families.

Region 8 | 03/18/2025

Sentiment: 4 strongly support, 9 support, 1 neutral/abstain, 0 oppose, 0 strongly oppose 

Comments: The region supported this proposal and thought it was important to continue and refine the committee’s work on this. An attendee asked the committee to re-evaluate the date of January 4, 2024 for notification of all patients added to the waitlist. They requested clarity on whether the transplant centers just need to retroactively notify any patient added to the waitlist since January 4, 2024 that is still on the waitlist; or whether it would be more efficient to set an effective future date. A center explained that while they support this proposal’s intent, they have concerns about the growing burden on the transplant programs.

American Society of Nephrology | 03/18/2025

Please see attachment.

View attachment from American Society of Nephrology

University of Arkansas | 03/18/2025

After review of this proposal, we believe that imposing retroactive requirements on transplant programs will further stretch limited resources and pull focus away from other quality improvement initiatives. This proposal applies to all candidates registered on or after January 4th, 2024 and would require transplant centers dedicate significant time to reviewing candidates that have already been reviewed under previous policy. Initially, transplant centers were required to review their waitlist and submit modifications for all eligible candidates. After review of their current waitlist, centers were required to notify all newly registered candidates of the requirements of the transplant program and submit modification on the candidate’s behalf. Then, a second notification regarding qualification for eGFR modification and the results of the case review is sent to all patients. This continues to be how centers review all patients who are placed on their waiting list. Requiring a written policy for each transplant center would be repetitive and unnecessary as the OPTN has a policy regarding eGFR modification that outlines the requirements of transplant centers. In addition, transplant centers are notifying patients and their providers about their eGFR modification eligibility and the outcome of their application via two notification letters. These letters are saved in the patient’s chart and can be reviewed for compliance, requiring additional documentation would be time consuming and a poor utilization of resources. We believe that the thorough review and notification/documentation that is currently being done adequately identifies patients who qualify for eGFR modification and allows transplant centers to quickly and efficiently modify their wait time. We are concerned that the additional workload this proposal would add to transplant centers could negatively impact the speed at which these modifications can be made.

NATCO | 03/17/2025

NATCO appreciates the opportunity to comment on this proposal. NATCO supports the essence of the policy proposal: removing racial barriers to kidney transplantation. We believe that much of what is proposed such as mandating that transplant centers have a policy or protocol is reasonable and likely already in place at many transplant centers. We also suspect that transplant coordinators, as patient advocates have been discussing the eGFR modification with their patients since the modification policy was enacted and certainly they would let patients know the outcome of any attempt at wait time modification. Notifying patients of wait list status change is already mandated by CMS Transplant Conditions of Participation. NATCO appreciates the committee’s comments that these notifications do not need to be “stand alone” but suggest that explicit language to this effect be included. These elements of the proposal will not place a significant burden on transplant centers. As with the initial policy, the requirement of notifying all candidates, regardless of eligibility, seems unjustifiable. Once race is confirmed as not Black or African American or in pediatric patients for whom eGFR is not used, why would these candidates need to be notified of a non-pertinent policy? Some members have reported that inclusion resulted additional call and message burden by patients contacting them because they were confused or some even angry. NATCO also agrees with several other commenters that retroactive policy enforcement is unreasonable.
As far as resources that would assist in implementation, we would suggest a patient education brochure be developed. Sample policies might be helpful as well.

OPTN Transplant Coordinators Committee | 03/17/2025

The OPTN Transplant Coordinators Committee thanks the OPTN Minority Affairs Committee for all of their hard work and dedication on this complex and incredibly important project. The Committee submits the following feedback for consideration:

The Committee found the majority of the expectations in the proposal fair, and the language is clearer than previous iterations the Committee has reviewed. They stress the importance of providing materials to help programs understand compliance before implementation, as the lack of such materials previously led to unintentional non-compliance. The Committee strongly opposes the requirement for members to meet expectations retroactively from January 2024, arguing that there is no precedent or legal standing for this. The administrative burden and potential non-compliance issues could lead to an increase in corrective action plans and subsequent increased costs. Members highlighted this could set a concerning precedent for future policies as well. It was recommended that this provision be removed from the proposal. Additionally, there was disappointment that the policy was not discussed at regional meetings and was instead presented as a consent agenda item, members deemed this unacceptable given its significant operational implications.

Another member emphasized the need for clear education on documentation requirements, including webinars and FAQs. They suggested that people need to understand that some documentation can be done simultaneously, rather than requiring multiple notifications to patients, thereby hopefully decreasing the administrative burden.

Region 1 | 03/17/2025

Sentiment:  3 strongly support, 2 support, 0 neutral/abstain, 2 oppose, 0 strongly oppose 

Comments: No comments. 

Association of Organ Procurement Organizations | 03/17/2025

AOPO commends the OPTN Minority Affairs Committee’s (“Committee’s”) actions in implementing race-neutral estimated glomerular filtration rate (eGFR) calculations based on science. The Committee’s policy modifications require transplant programs to review their waitlists to identify candidates possibly eligible for waiting time modifications. Additionally, the policy requires programs to inform candidates of their mandated waitlist review and apply for modifications for all candidates deemed eligible, which encourages equitable, unbiased healthcare and improved patient outcomes. Now, the Committee proposes to enhance the notification requirement, requiring programs to advise candidates of their eligibility and of the outcome of any wait time modification applications submitted on behalf of the candidate.

AOPO applauds the Committee for recognizing the precarious financial, emotional and physical burdens many transplant candidates face by properly laying the burden of correcting past harms on transplant programs, not sick patients. Further, AOPO supports the Committee’s proposal to increase communication between transplant program and patient by requiring programs to notify candidates of their eligibility for wait time modifications and inform candidates of the outcome of any wait time modification applications. These commonsense communication requirements will ensure that patients are informed of programs’ clearly defined responsibilities, making it easier for patients to hold programs accountable for their role in OPTN policy implementation. AOPO also supports this increased communication because it should ensure that all patients have the information necessary to make informed decisions related to their ability to obtain equitable access to life-saving transplants.

Additionally, enhanced notice requirements will require that patients know the outcome of any wait time modification applications submitted on their behalf, provide patients with a deeper understanding of the reality feasibility of possible treatment options, increase patient involvement in their own healthcare and allow patients to seek recourse or appeal of the OPTN’s decision. AOPO also supports the Committee’s proposal to require programs to maintain written protocols for:

•confirming candidate race,

•notifying candidates of requirements within the policy,

•seeking supporting documentation of eligibility, including at a minimum what sources will be reviewed, and

•documenting that the above processes were completed, including the results of the review of sources, in the candidate’s medical record.

Specifically, written protocols and thorough documentation are essential to effectively implement and comply with this policy proposal. First, written protocols will increase clarity and consistency by communicating a standard for all transplant program staff to follow. Second, documented processes that clearly define responsibilities for transplant program staff increase accountability, making it easier to hold specific individuals or teams accountable for their roles in OPTN policy implementation. Third, written procedures will assist transplant centers in streamlining workflows, which will hopefully expedite wait time modifications and reduce additional waitlist time.

Further, the proposed written protocols will provide a reference for audits and permit assessments of the policy’s effectiveness. The requirement that programs maintain thorough records of policy implementation also permits the OPTN to more easily identify areas for improvement and implement data-driven policy adjustments. AOPO notes that the Committee will continue monitoring eGFR values entered in the OPTN Computer System and is encouraged by the Committee’s continued commitment to right this historical inequity that continues to harm African American patients awaiting lifesaving transplants.

Region 2 | 03/14/2025

Sentiment: 2 strongly support, 13 support, 1 neutral/abstain, 0 oppose, 0 strongly oppose 

Comments: This was not discussed during the meeting, but attendees were able to submit comments with their sentiment.  One attendee noted that discussions with other pediatric programs revealed that only seven patients under 18 were affected by the policy, as race-based eGFR calculations are not standard practice in pediatrics. Given the minimal impact, transplant programs find the requirement burdensome and confusing for families. There is a call to find an alternative approach to meet the policy’s intent without requiring all pediatric programs to comply with unnecessary notifications. 

American Society of Transplantation | 03/13/2025

The American Society of Transplantation (AST) generally supports the proposal, “Monitor Ongoing eGFR Modification Policy Requirements.”

The notification requirements detailed in the proposal are clear. The AST does not recommend requiring in policy that the search for candidates’ supporting documentation must be completed prior to delivery of the eligibility notifications, instead preferring kidney program discretion to determine the best approach to fulfill these requirements for each candidate.

The AST is supportive of applying the updated, more explicit notification requirements for all candidates registered on or after January 4, 2024. This will create a consistent, transparent, and equitable approach for all kidney candidates. The AST recommends at least one year for kidney programs to notify all candidates registered on or after January 4, 2024, considering the significant effort this change will require of some kidney programs and the upcoming implementation of the Increasing Organ Transplant Access (IOTA) Model that will also demand transplant staff resources.

To realize the goals of this proposal and to support the implementation of these proposed policy requirements, the AST suggests developing supporting educational materials for transplant hospital staff and for patients. Materials for transplant professionals could review the requirements, what the OPTN will assess to determine compliance with these requirements, and examples of patient notifications that kidney programs could use as a template. Materials for transplant patients and others in the public could focus on the rationale and need for these policies, what patients can expect as a result of these policies, and eligibility requirements for a waiting time modification. Ideally, patient education would be conveyed through multiple mediums and in multiple languages.

American Society for Histocompatibility and Immunogenetics (ASHI) | 03/13/2025

This proposal is not pertinent to ASHI or its members.

Anonymous | 03/12/2025

I agree with this change

Amir H | 03/11/2025

I have family I agree with this change

OPTN Transplant Administrators Committee | 03/11/2025

The OPTN Transplant Administrators Committee appreciates the opportunity to comment on the Minority Affairs Committee's proposal on Monitor Ongoing eGFR Modification Policy Requirements. The Committee offers the following feedback for consideration: 

· The Transplant Administrators Committee is supportive of moving forward in eGFR policy rather than a look-back with further notification requirements.

· The Committee questioned why race confirmation is necessary. Further, they questioned if the definition of "Black or African-American" is inclusive enough to capture groups such as Afro-Latinos.

Overall, the Committee is supportive of the developments on this policy. 

Region 4 | 03/11/2025

Sentiment: 3 strongly support, 12 support, 1 neutral/abstain, 0 oppose, 0 strongly oppose

Comments: None

American Nephrology Nurses Association (ANNA) | 03/10/2025

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View attachment from American Nephrology Nurses Association (ANNA)

Ashley Cardenas | 03/07/2025

As an individual, as an administrator and as a contributor to the committee that developed this proposal, I was - and remain - strongly opposed to implementing a retroactive requirement that obligates transplant programs to meet what would be entirely new documentation standards for all candidates registered on the waiting list on or after January 4th, 2024. This poses an undue administrative burden on transplant programs, many of which lack the necessary resources to retroactively update documentation for previously listed candidates (AGAIN).

Further, holding transplant programs accountable to a standard that was not clearly defined at the time of the initial implementation is fundamentally unreasonable. Established regulatory and policy frameworks avoid retroactive enforcement due to the undue burden placed on those operating in good faith under previous guidance. Policy changes of this nature should prioritize prospective application to ensure fairness, feasibility, and sustainability.

The Board should also be aware that committee members made an explicit request that this proposal be discussed at the regional meetings which was not honored. Lack of contextual feedback on such an important element of this proposal should not be interpreted as support or acquiescence - community members were not given the opportunity to discuss in an open format.

Renown Transplant Institute | 03/07/2025

Position: Support with Amendments

On behalf of the Renown Transplant Institute, we would like to express our sincere appreciation for the ongoing efforts of the Minority Affairs Committee (MAC) to improve equity in access to transplantation and for the opportunity to provide comment on this critical issue. Addressing systemic inequities, including the historic utilization of race-based eGFR calculations, is critical to ensuring a just and fair transplantation system. We support the intent of this policy proposal, and the recommendations put forward for its operationalization.
However, the need for this policy modification highlights significant shortcomings in the initial implementation of the changes to Policy 3.7D. These changes were enacted under intense external pressures, without sufficient operational planning, clarity, education or support for transplant programs.

While it’s impossible to argue that ethically, this was the right thing to do for patients, the resulting policy – in particular the post-public comment modifications made by the Committee and Board – imposed a significant administrative and financial burden for programs under a strict timeline. Had a more deliberate approach been taken—by engaging stakeholders to fully consider the practical implications, issuing clearer initial guidance, and providing adequate education and resources prior to implementation—we would not be in the position of revisiting this policy today.

While we support the notification and documentation requirements put forth, we strongly oppose that transplant programs be required to retroactively meet these obligations for all candidates registered on the waiting list on or after January 4, 2024. Imposing such a requirement to mitigate the prior lack of proactive planning places undue burden on transplant programs, diverting resources from daily patient care and other equally important quality improvement efforts.

Further, holding transplant programs accountable to a standard that was not clearly defined at the time of the initial implementation is fundamentally unreasonable. Established regulatory and policy frameworks avoid retroactive enforcement due to the undue burden placed on those operating in good faith under previous guidance. Policy changes of this nature should prioritize prospective application to ensure fairness, feasibility, and sustainability.
We respectfully request that the committee reconsider. Rather than imposing retroactive requirements that will undoubtedly create an unworkable compliance expectation, we urge the committee to adopt a forward-looking approach focused on prospective measures that enhance clarity, equity, and operational feasibility with clear, well-communicated guidance and the necessary resources to support successful implementation from a defined future point onward.

Region 7 | 03/04/2025

Sentiment:  2 strongly support, 4 support, 4 neutral/abstain, 0 oppose, 0 strongly oppose 

This was not discussed during the meeting, but attendees were able to submit comments with their sentiment. The region was supportive of this proposal. One attendee commented: “This proposal should hopefully ensure that all candidates left who don't understand the modification are notified.” 

Lorrinda Gray-Davis | 03/04/2025

I support these changes because:

Clear and consistent notification requirements ensure that all kidney candidates registered on or after January 4, 2024, are informed of their eligibility and wait time modifications. Patients should not have to navigate these complexities alone; they deserve full transparency.

Stronger documentation standards will help reduce disparities in eGFR calculation-based wait time modifications, preventing inconsistencies in how different transplant centers apply the policy.

Removing outdated reporting requirements improves efficiency while maintaining the core principle of fairness in organ allocation.

However, there are areas where additional guidance and education could enhance implementation:

Clarification on notification expectations:

How will transplant centers ensure that notification is provided in an accessible and culturally competent manner?

Will there be specific templates or standardized language provided for patient notifications to ensure clarity?

Education for transplant programs and patients:

Will transplant centers receive training or educational materials on how to implement these updates uniformly?

How will patients be informed about their rights under this policy, including what documentation is necessary to support wait time modifications?

Broader impact on equity in transplant policy:

Could the lessons from this policy update be applied to other areas of racial disparities in transplantation?

What further steps can be taken to ensure all racial and ethnic groups receive equitable consideration in kidney allocation beyond eGFR modifications?

This proposal is a positive step toward improving fairness and standardizing transplant center practices, but ongoing education, outreach, and monitoring will be essential for its success. I encourage the OPTN Board of Directors to approve this proposal while also considering additional patient education efforts to ensure that all transplant candidates fully understand these changes and their impact.

Anonymous | 03/03/2025

I think transparency is important in the area of organ donation. I have many patients that are unaware of this process, but are interested in understanding how the system works. I am not sure dating back to Jan 2024 is the best use of our resources, but maybe picking a future date would make more sense logistically. I think we need to keep in mind limited time and resources and balance this with the transparency going forward.

Region 3 | 03/03/2025

Sentiment: 4 strongly support, 6 support, 4 neutral/abstain, 0 oppose, 0 strongly oppose

Comments: None

Region 5 | 02/28/2025

Sentiment:  8 strongly support, 13 support, 5 neutral/abstain, 2 oppose, 1 strongly oppose 

Comments: There was mixed feedback on this proposal. While some in the region strongly action to further equality among patients, others commented that this proposal will create an extra burden for transplant programs. One member suggested the committee focus on moving forward in anticipation of overarching changes for transplant.

Carle Porter | 02/21/2025

As a black man myself, I was terrified to know that my kidneys were failing and I choose to be on the transplant list. Because as a black man I knew what I was going to face. I was more scared of transplant than dialysis knowing that I was going to be subjected to systematic issues that were put in place centuries before my existence. The disparity is real for African Americans and kidney transplant! For me the apologies need to be as loud as the disrespects. Quietly brushing the hate, unfairness and lack of empathy under the rug needs to be openly acknowledged.

Those who may perpetuate and believe in those ideals need to be removed. I know a few people at UCDAVIS that could use some reeducation about how to interact with patients that don't look like them.

I knew I was going to face discrimination because I always do, in everything, everywhere so why would transplant be any different? That being said I feel overwhelming fear that as a black man with O blood that transplant will never happen or at the very least I wait SO long it won't matter OR I die first. The race-inclusion should be announced publicly where everyone can see and transplant coordinators, nurses, technicians even dialysis centers should be notified and educated! There is no reason that I a patient should know more about the inner working of transplant than my coordinators and dialysis center!

I shouldn't feel a sense of hopelessness waiting for transplant knowing there are are other racial groups not waiting nearly as long as 7, 8, 10, 15 years!? Then to wait all that time, just to be told NO? People are dying by the thousands and we aren't just casualties of war, meaningless lives to be discarded because society said they don't want us around! We are human beings and we have value too!

Lastly, I asked my transplant coordinator at UCDAVIS specifically about race-based inclusion and without them even knowing what it was told me I didn't qualify. But come to find out, I did getting a year and half. On smaller levels a lot of these centers have freedom to make decisions for people's lives.

Marquise Ruffin | 02/16/2025

I agree that transparency and clear language should be used when it comes to eGFR wait times. The documentation of all races should accounted for.

Margaret Sullivan | 02/03/2025

Proposal 3.7.D.i. applies the notification rule to all candidates registered on or after January 4, 2024, thus, once again going backwards. This is an unnecessary time-consuming burden on the members of the team of the transplant program. We need to focus on moving forward with all the regulatory changes coming to transplant form all entities.

Robert Goodman | 01/21/2025

While I am not a member of a minority, I fully support getting the most out of the changes that have already taken and for those being proposed. Racial disparities should not be systemic, institutionalized or made part of the protocol for evaluating patients for transplant.