Comments

Transplant Families | 10/03/2025

Transplant Families strongly supports the proposed requirement that patients be notified when their waitlist status changes. For pediatric patients in particular, clear communication with caregivers is not only a matter of courtesy but of ethics. Families facing the uncertainty of transplantation need full transparency to make timely and informed decisions about their child’s care.

We recognize concerns raised about the administrative burden to transplant centers. However, the ethical responsibility to keep patients and families informed must outweigh operational inconvenience. This is especially important given past, highly publicized instances where patients were not made aware of status changes, undermining public trust in the transplant system.

We believe there are practical ways to reduce this burden. For example, many centers already use electronic health records with built-in messaging functions. Automated notifications through EHR systems could deliver timely updates to families without requiring manual phone calls or letters. This approach would meet the intent of the policy while minimizing staff workload.

Looking ahead, we strongly encourage the OPTN to pursue a centralized, patient-facing portal. A secure national platform where candidates and caregivers can log in to view real-time waitlist status would set a new standard for transparency and reduce duplicative communication at the center level. Such a tool would also align with the OPTN’s broader goals of patient empowerment and equitable access.

This proposal is long overdue and reflects a reasonable, long-standing request from the Patient Affairs Committee. Families have consistently voiced the need for clarity about their waitlist status, and this change is a crucial step toward rebuilding and maintaining trust.

We urge adoption of this policy with consideration for the practical solutions above to ensure that no patient or family is ever left unaware of their transplant waitlist status.

Colleen O'Donnell Flores | 10/01/2025

Thank you for working on a proposal to support patient rights and communication. I support the intent of this proposal and am further convinced that written communication is important. However, I encourage the committee to analyze the length of time that candidates are in Status 7/ inactive BY ORGAN.

I believe the length of time in Status 7 and the proportion of inactive time will differ by organ. I do not think that this Committee wants a transplant center to send a written notification about status changes to a patient or the patient's family who subsequently receives a transplant or dies waiting for an organ. These exceptions should be considered as they are already in Policy 3.5.

This analysis may also lead the committee to consider a timeframe with which to impose the written notification. For example, if a patient is inactive, one could provide verbal communication immediately (which is typically done anyway), and when inactive for 30 days, then a written notification must occur.

Please also consider an annual letter for EACH year a candidate is inactive on a waiting list. If this written notice is adopted, please require the transplant center to provide the reason.

I believe the policy should clarify that the status change notifications apply to Status 7 only and do not apply to a change in heart or lung status or MELD score.

Finally, I think it is important for centers to clarify, in any Status 7 notifications, that patients in Status 7 are unable to receive organ offers; the reason for the Status 7 designation; and the date they were inactivated.

DaVita | 10/01/2025

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Region 2 | 10/01/2025

Sentiment: 5 strongly support, 6 support, 1 neutral/abstain, 1 oppose, 0 strongly oppose

Comments: Several attendees noted that written notification may not be the most effective approach, especially when patients are reactivated before an inactivation letter could reasonably be delivered. They emphasized that best practices include timely communication through MyChart, phone calls, or in-person discussions with patients and families. Questions were raised about whether a letter would be required each time a patient changes from active to inactive status and back again, and whether notifications must also extend to nephrologists or other care providers in addition to the patient. Others argued that letters serve an important role, since phone calls can be missed, not all patients have access to MyChart, and some facilities do not offer electronic portals. These attendees saw little downside to letters as a supplemental form of communication. Concerns were raised that the proposal could unintentionally increase the number of “internal hold” candidates, especially at extra-renal programs, where patients may move between statuses for very short periods. This could reduce allocation efficiency. Suggestions included adding a field in the OPTN Computer System to document when patients were verbally notified, including the date and time, or allowing centers flexibility to determine their own method of communication, provided they have a clear policy in place. Attendees generally agreed that ensuring patients are aware of their status is critical, and that programs should use communication methods suited to the patient’s literacy level and access to electronic resources. While some supported written notification as long overdue, others described it as outdated technology that, without patient acknowledgement, may not provide meaningful confirmation. Concerns were also raised that repeated letters for patients who frequently transition between active and inactive status could cause confusion. There was support for the principle that patients have a right to know their status, but attendees emphasized that the process requires further refinement with transplant programs. Some suggested that notifications could be automated through OPTN systems to reduce the burden on centers. A number of attendees supported the proposal with amendments, specifically that programs should not be required to send letters. For thoracic programs with many hospitalized patients whose statuses change frequently, letters were described as impractical and burdensome. Attendees concluded that documentation of discussions through phone, in-person visits, or electronic health records should be considered sufficient.

National Kidney Foundation | 10/01/2025

The National Kidney Foundation (NKF) is commenting in strong support of the OPTN proposal, Require Patient Notification for Waitlist Status Changes. NKF is a longstanding champion of greater transparency for patients navigating the arduous process of trying to receive a kidney transplant. Patients commonly describe the transplant process as a “black box” in which they receive limited information and insights about numerous aspects of the journey, particularly when decisions are made that implicate their ability to access the kidney transplant waitlist, engage in shared decision-making regarding organ offers, and maintain active status.

The National Kidney Foundation is engaged in a multipronged strategy to improve transparency in the kidney transplant process. The foundation of this strategy is capturing patient preferences regarding where in the process greater transparency is needed and, importantly, how to implement greater transplant in a patient-centered manner that captures the wide range of values and preferences patients report. Policy is a second foundational component of our work to center the patient’s needs and preferences in the transplant process. We support material public policy requirements, promulgated across government agencies, that put empowering information into the hands of patients and families to inform the journey to transplant.

OPTN policy currently requires transplant centers to notify patients when they are added to the list, when their evaluation is finished but they are not added to the list, and when they are removed from the list. Per the OPTN, these notifications must be made in writing. Current OPTN policy requirements are consistent with the Centers for Medicare and Medicaid Services (CMS) Conditions of Participation (CoP) for solid organ transplant programs. The transplant program COPs include a patient records standard at 42 CFR 482.94(c) that requires transplant centers to inform the patient and the patient’s dialysis facility of his or her status on the waitlist following the evaluation and notification within ten days if a patient is removed from the list for any reason other than death or transplantation.

The CMS Conditions of Participation (COPs) set the minimum federal standard for transplant programs, which CMS clarifies in the preamble to the final rule of March 2007, Medicare Program; Hospital Conditions of Participation: Requirements for Approval and Re-Approval of Transplant Centers To Perform Organ Transplants as follows, “[w]e are responsible for establishing minimum standards to protect patient health and safety, and for implementing oversight mechanisms to ensure that transplant centers provide quality transplant and living donor care to Medicare beneficiaries through the development of health and safety requirements.” In other words, we believe it is appropriate for CMS to set the floor for safety and quality and for the OPTN, as a membership organization committed to patient-centricity, to develop and implement policies that build on that floor. We commend the Transplant Coordinators Committee for their vision and commitment to empowering patients with information about their status on the waitlist.

With regards to implementation, we share the concerns of other organizations that sending notifications in writing may not be the optimal approach to sharing important information with patients, and further that for the information to be actionable, it may need to include the reason for the status change and what patients must do to modify it. However, policy requirements provide both a starting point and a framework for iterating. As the policy requirement takes effect, we will learn more about how to provide waitlist notifications and all notifications in a manner that meets the needs of patients and their families. Further changes to the policy can be adopted that reflect these learnings.

In addition, we are hopeful that the continued modernization of the OPTN and bipartisan, bicameral efforts to fund the essential work of the modernization, will allow HRSA to deploy enhanced technology that will facilitate the creation of patient-facing tools like apps, in which patients could see a simple image that identifies their waitlist status as either “active” or “inactive.” Such an approach would not only be patient-centered but would address concerns that new notification requirements would create undue burden on centers.

In summary, we encourage the OPTN to expeditiously adopt and implement the policy proposal, Require Patient Notification for Waitlist Status Changes. We look forward to working with the OPTN and HRSA to build an implementation strategy that brings more of the transplant process into the light for the thousands of people waiting for a lifesaving kidney transplant.

Region 1 | 10/01/2025

Sentiment: 3 strongly support, 6 support, 1 neutral/abstain, 0 oppose, 1 strongly oppose

Comments: A member noted that this has been discussed for a long time and expressed concern about the burden, particularly the frequent movement between inactive and active status, fearing that programs may internally hold patients rather than make them inactive, and emphasized the need to consider differences across organs. An attendee emphasized the importance of continued patient engagement and asked whether a portal had been discussed, highlighting the value of real-time communication. A member stated that documentation of the conversation should be sufficient and that a letter should not be required. An attendee shared that their center already performs this communication, but patients often remain unaware of their inactive status, noting that mail is often ignored, and expressed support for the idea of a portal. A member agreed that a portal is a great idea and recommended keeping notification documentation general to accommodate different patient situations. An attendee stated that letters help reinforce communication with referring physicians and dialysis centers and shared that their program sends biannual letters with patient status. A member suggested that a longer duration of status change might be more appropriate for notification than a short time frame. An attendee asked whether OPTN data tools would be updated before implementation to help programs monitor. A member stated that most centers already practice this and patients appreciate it, recommending a patient portal as the logical next step. An attendee supported standardizing communication but emphasized that information should also be shared with referring physicians and that status changes are often misinterpreted as removal from the list, stressing the importance of maximizing patient understanding while minimizing administrative burden. A member noted that most centers have some process in place but highlighted the need for tools and time frame guidance as part of implementation. An attendee supported the policy with conditions, requesting multimodal communication options including phone calls if documented. A member stated that documentation in the EMR alone should be sufficient.

University of California San Diego Medical Center | 10/01/2025

I am in agreement with this policy. This has been practice within the transplant programs. This should not be any increase in administrative burden.

Luis Mayen | 10/01/2025

I strongly support requiring timely patient notification for any changes to waitlist status. Patients and their families face immense uncertainty while waiting for a transplant, and transparent communication is critical for informed decision-making and trust in the system.

Having experienced the system firsthand, I know how important it is for patients to have clear and timely information, as it empowers them to plan their care, coordinate logistics, and feel confident that the process is fair and predictable. Requiring notification should be paired with integration into patient portals, clear educational materials explaining status changes, and a mechanism for patients to acknowledge receipt and provide feedback. These steps will ensure notifications are effective, understood, and actionable.

Implementing this requirement with these enhancements will improve patient engagement, reduce confusion, and reinforce trust between patients, transplant centers, and OPTN. Clear communication is not just a policy - it is a critical component of patient-centered care.

Not Dead Yet | 10/01/2025

See the attachment from Not Dead Yet, a disability rights group that is against assisted suicide and euthanasia laws.

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American Society of Nephrology | 10/01/2025

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Region 4 | 10/01/2025

Sentiment: 8 strongly support, 11 support, 2 neutral/abstain, 2 oppose, 0 strongly oppose

Comments: During the discussion, attendees expressed support for the proposal’s intent to keep patients informed of waitlist status changes, while raising concerns about requiring written notification. One attendee noted that patients who are critically ill may move frequently between active and inactive status, and that sending letters in these situations could result in outdated or confusing communication for both patients and families. Another attendee highlighted that for patients temporarily living away from home, such as in a Ronald McDonald House, mailed letters may be ineffective, and that phone or electronic communication would be more practical. Several attendees suggested that centers should have flexibility to notify patients via phone calls, email with read receipts, or a patient portal, rather than being limited to written letters. Several attendees emphasized the importance of including the reason for a status change, along with guidance on what, if anything, a patient can do to return to active status. Some recommended a timeline-based approach to defining inactive status (e.g., less than 10 days, 11–29 days, 30–89 days, 90–180 days) to standardize reporting and communication. Multiple attendees noted that some centers do not use Epic or other EMR portals, making flexibility in the method of communication critical, and highlighted the need to account for patients with limited internet access or low health literacy. Many attendees supported documenting communication in the patient’s chart as sufficient to meet the requirement, with written letters reserved only when patients cannot be reached by phone or electronically. Some noted that centers already use combined approaches, such as calling patients first and following up with letters for transparency. Several attendees commented that a UNOS patient portal could provide a centralized, transparent way for patients to track status changes, though considerations for accessibility and comprehension remain important. One attendee recommended quarterly notification, adding that explaining short-term inactivation can be confusing and cause patients and family’s undue concern.

Association of Organ Procurement Organizations (AOPO) | 10/01/2025

AOPO supports the proposal to require transplant programs to notify patients when their waitlist status changes. Organ Procurement Organizations (OPOs) understand the success of donation and transplantation relies on maintaining public trust, and it is essential to uphold that trust at every step of the process and among all entities involved in the system.

Requiring patient notification of waitlist status changes promotes transparency, which directly strengthens confidence in the system. Furthermore, the Health Insurance Portability and Accountability Act (HIPPA), requires patients to be provided with easy access to their medical records as this empowers them to be more informed and knowledgeable. Notifying patients of changes in their waitlist status as they navigate the donation and transplantation system is also an important tool to support them and follows the spirit of HIPAA. Individuals waiting for a transplant are managing complex medical and emotional challenges and ensuring they are aware of their status empowers them to collaborate with their caregivers and transplant teams to make informed decisions about their care.

AOPO supports the requirement for a notification period of 10 business days. While we do not believe written notification is necessary, we recommend documentation be required to verify patients and their caregivers were notified of any changes. Additionally, we recommend patients are provided with education about what listing status changes mean and the potential implications for their treatment and outcomes.

OPTN Membership & Professional Standards Committee | 10/01/2025

The Membership and Professional Standards Committee (MPSC) appreciates the work of the Transplant Coordinators Committee (TCC) in developing and presenting this proposal. Overall, the MPSC supports the proposed changes and offers the following comments and recommendations for consideration.

An MPSC member began the discussion by emphasizing the importance of patient empowerment and engagement in the transplant process. The member noted that the most appropriate method of communication between patients and clinicians should be determined by the transplant care team, as letters may not always be the optimal approach. In some cases, a direct conversation may be more suitable, and compliance could be monitored through a requirement to document the interaction in the candidate’s medical record. Another member suggested that communication via electronic medical record (EMR) systems could be a convenient and efficient option for both patients and care teams. This method may reduce administrative burden while allowing patients to engage in documented conversations or follow-up phone calls to clarify any concerns. Several members agreed that direct conversations are the most effective and reliable method of communication. This approach is already standard practice at many centers, and documentation in the medical record is considered a legal and sufficient means of compliance.

Concerns were raised regarding potential unintended consequences of the policy, particularly the possibility of increased burden on the MPSC due to significant non-compliance. This could stem from delays in delivering formal letters or patients missing notifications sent through EMR platforms. A member recommended establishing a data-informed minimum time threshold during which centers wouldn’t need to notify patients of inactivity. The Chair agreed, noting that requiring notifications for short-term changes could be burdensome for programs and confusing for patients. 

Another member highlighted the risk of centers increasing use of informal “internal hold” mechanisms to avoid sending notification letters, especially for short-term inactivation. This practice could impact allocation out of sequence and reduce transparency with patients. It was noted that in the case of a candidate’s hospitalization, it does make sense to promote transparency and inform the patient of their short-term status changes, if conversations are allowed to be documented in the candidate record. 

The Chair commented that a patient portal would be the most effective tool for informing patients about their listing status and several members concurred. However, the presenter clarified that the time and financial resources required to build such a portal are substantial, and the TCC was tasked with proceeding with a version of the current proposal without that feature. The MPSC is grateful for the TCC’s work on this proposal and appreciates their thoughtful consideration of the committee’s feedback.

OPTN Pediatric Transplantation Committee | 10/01/2025

The OPTN Pediatric Transplantation Committee (the Committee) supports the goal of improving transparency by ensuring patients and families are notified of changes to waitlist status. Keeping families informed helps them stay engaged in care and prevents situations where candidates are unaware they have become ineligible to receive offers.

However, the Committee is concerned that written notification for every change could create unnecessary burden for programs and overwhelm families, particularly for pediatric candidates who may move on and off inactive status frequently for short-term reasons. In many cases, phone communication with documentation may be more effective and patient-centered. The Committee also encourages the development of standardized templates and long-term investment in an OPTN patient portal to provide real-time access to waitlist status. Overall, the Committee supports the intent of the proposal while recommending flexibility and practical implementation strategies.

Anonymous | 10/01/2025

I think this is a best practice but should not be something mandated by the OPTN. During the regional meetings there were lots of concerns shared surrounding the format of the notification and that the communication does not need to include the reason for the status change. Additionally, I thought UNOS was working on a patient portal so patients could log in to see their own status on the waitlist at any time. Maybe we go back to looking at and funding that project instead of mandating the transplant programs to complete even more "paper work".

OPTN Patient Affairs Committee | 10/01/2025

The Patient Affairs Committee (PAC) strongly supports this proposal and feels it is long overdue. PAC originated the need for this solution after witnessing friends and family miss out on critical weeks and months of life-saving opportunities for organs because they were unaware they had gone inactive. PAC supports the proposal’s simple approach to empowering patients and guaranteeing that all candidates can receive a clear “active” or “inactive” notification of their status. PAC suggests the proposal incorporate additional notification methods, such as text, phone, and use of a patient portal, to ensure patients are receiving convenient and accessible updates, and also recommends that these notifications are sent to patients’ caregivers. The use of “snail mail” is not recommended as a notification tool due to challenges in timely delivery. PAC emphasizes notifications should include direct contact links to transplant coordinators, so that a patient can immediately reach out to understand why their status has changed to inactive. PAC supports education and guidance for transplant programs in implementing these status notifications and urges the swift adoption of this patient-centered proposal.

Donor Network West | 09/30/2025

Donor Network West, serving Northern California and Nevada, supports the proposal to require patient notification for waitlist status changes. Timely, transparent communication with patients is essential for informed decision-making, building trust in the transplant process, and promoting patient-centered care.
We commend the Committee for prioritizing patient engagement and encourage ongoing collaboration with transplant centers and patient advocacy groups to ensure notifications are clear, consistent, and actionable.

Jeff Parke | 09/30/2025

The OPTN proposal to require patient notification for waitlist status changes is a step forward, but several crucial gaps remain. The policy is missing strong requirements for real-time, digital notification systems that could ensure patients receive status updates immediately, not days later. Without a patient-centered online portal or dashboard, candidates cannot track their status independently or understand reasons for inactivity, leaving people with limited visibility into their own progress or barriers. The proposal only calls for basic notification content—often just informing patients that their status has changed—rather than providing clear explanations, actionable next steps, or individualized support information tailored to the patient’s needs and circumstances.

Additionally, the communication process remains one-way, with no formal requirement that patients verify receipt or comprehension of status changes. This oversight risks leaving vulnerable patients—those with language barriers, disabilities, or unstable living arrangements—unaware of changes that could delay their transplant eligibility. Although disparities affecting minority patients are acknowledged, there are no concrete standards for language translation, targeted outreach, or navigator support to actively close equity gaps. The proposal also grants broad discretion to transplant centers on how they implement and document notifications, which could result in inconsistent practices, weak oversight, and minimal audit trails.

Finally, the draft lacks a clear path for patients to appeal or escalate delays and problems in the notification process, nor does it mandate broader patient empowerment features like satisfaction monitoring, policy education, or centralized reporting. For this policy to fully serve patients, it needs enhancements that address digital engagement, two-way communication, actionable content, equity, consistency, and transparency throughout the system.

Anonymous | 09/30/2025

The OPTN proposal to require patient notification for waitlist status changes is a step forward, but several crucial gaps remain. The policy is missing strong requirements for real-time, digital notification systems that could ensure patients receive status updates immediately, not days later. Without a patient-centered online portal or dashboard, candidates cannot track their status independently or understand reasons for inactivity, leaving people with limited visibility into their own progress or barriers. The proposal only calls for basic notification content—often just informing patients that their status has changed—rather than providing clear explanations, actionable next steps, or individualized support information tailored to the patient’s needs and circumstances.
Additionally, the communication process remains one-way, with no formal requirement that patients verify receipt or comprehension of status changes. This oversight risks leaving vulnerable patients—those with language barriers, disabilities, or unstable living arrangements—unaware of changes that could delay their transplant eligibility. Although disparities affecting minority patients are acknowledged, there are no concrete standards for language translation, targeted outreach, or navigator support to actively close equity gaps. The proposal also grants broad discretion to transplant centers on how they implement and document notifications, which could result in inconsistent practices, weak oversight, and minimal audit trails.
Finally, the draft lacks a clear path for patients to appeal or escalate delays and problems in the notification process, nor does it mandate broader patient empowerment features like satisfaction monitoring, policy education, or centralized reporting. For this policy to fully serve patients, it needs enhancements that address digital engagement, two-way communication, actionable content, equity, consistency, and transparency throughout the system.

NATCO | 09/30/2025

NATCO appreciates the opportunity to provide feedback on the proposed changes regarding patient notification for status changes on the transplant waiting list. We fully support the requirement that transplant programs notify patients within 10 business days of any status change, and we believe making this a standard practice will be a meaningful improvement to the transplant process.
These proposed changes are essential to improving communication, fostering transparency, and enhancing the overall transplant experience for patients. Timely notifications enable patients to make informed decisions about their care, better manage their expectations about organ offers, and plan for next steps in their treatment. Furthermore, providing patients with clear and accurate information can alleviate anxiety and support their emotional well-being as they navigate the complexities of transplantation.
Standardizing this practice across transplant programs will ensure that all patients, regardless of their location, receive the same level of care and attention, promoting fairness and consistency. Additionally, ensuring that all notifications (written or verbal) are documented in the patient’s medical record enhances accountability, ensures clear communication, and provides an important reference for both patients and healthcare providers.

Joseph Hillenburg | 09/30/2025

Waitlist status notification is an important step toward patient-centered care. Why did it take almost 15 years to get here? Also, the 10 year-old Patient Portal project is really needed in order to bring this project to completion.

Melaine Smith | 09/30/2025

As someone who lived with a serious liver disease, I know how important it is for patients to feel informed and included in their care. Waiting for a transplant is stressful enough—patients should never have to wonder whether their status on the waiting list has changed without their knowledge.

Requiring programs to notify patients within 10 business days of any status change gives patients peace of mind, helps families plan, and allows us to have meaningful conversations with our transplant teams. This is about dignity, transparency, and trust. Knowing our true status can make the difference between waiting in fear and waiting with understanding.

I strongly urge OPTN to adopt this proposal. Patients and families deserve timely, honest communication about something as critical as their place on the transplant list.

Respectfully,
Melaine Smith

The Association for Multicultural Affairs in Transplantation | 09/30/2025

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American Society of Transplantation | 09/30/2025

The American Society of Transplantation (AST) generally supports the proposal, “Require Patient Notification for Waitlist Status Changes.” This notification is vital information that should be communicated as part of patient’s plan of care. These proposed changes will support patients’ active participation in their own care, particularly in situations where their listing status changes due to reasons the patient may be able to resolve (e.g., substance use, suboptimal nutrition status, insurance issues).

The AST believes that transplant centers should have flexibility in how this information is communicated to patients and recommends that written documentation of the communication in the patient’s chart is acceptable to comply with these policy requirements. This communication may be in the form of a written letter, a message in the patient’s electronic medical record, an encrypted email, or a conversation with the patient either in person or on the telephone. Additionally, notification of patient status change by written letter alone may not be timely in all cases and could introduce an element of confusion when changes occur quickly. Based on the potential frequency of these changes, particularly for hospitalized and critically ill-patients, we recommend that chart documentation with patient notification (or caregiver notification if the patient is unable to receive and comprehend the notification) is sufficient to empower patients and support transparency. Additionally, use of electronic medical records and encrypted emails should be allowed considering patients who move, change mailing addresses, but do not update the transplant program of this change. Documentation in the medical record of a conversation with the patient or caregiver should also be an acceptable method of notification.

These waitlist status change notifications should at least include the specific reasons prompting the change to inactive status and information to contact the transplant program to discuss the patient’s waitlist status and potential next steps.

It will take programs time as they work to implement practices to meet these expectations in a consistent manner. To support transplant programs in this endeavor, the AST recommends the following:

• Reasonable implementation timelines to allow for systems adjustments and staff training

• Development of organ-specific educational materials using standardized, patient-friendly language

• Resources to support the integration of this process into each transplant program’s quality assessment and performance improvement (QAPI) initiatives, with routine tracking and reporting of communication efforts and outcomes.

Finally, the AST recommends excluding the notification requirement in the case of patient death as this is entirely unnecessary and can cause the patient’s family additional and unnecessary anguish.

OPTN Kidney Transplantation Committee | 09/30/2025

The OPTN Kidney Transplantation Committee thanks the OPTN Transplant Coordinators Committee for their work on this proposal and the opportunity to provide comment. The Committee expressed support for a policy requirement to ensure patients know their waitlist status.

One member remarked that the policy should allow notification to include messages in the patient portal and phone communication. The member shared that sending letters is not the best method, as patients may move or otherwise not see the letter. The member added that programs should be able to document the call and ensure that the patient has seen updates in the patient portal. Another member recommended that the proposed policy language be agnostic to the notification mechanism, allowing programs to determine the best mechanism for their patient population. The member explained that mechanisms change over time and that there should be a requirement for documentation of notification. Another member agreed that it is not necessary to be overly prescriptive in how notification is sent, particularly if the center must document the notification itself.

A member shared that there are instances where transplant programs in hurricane-prone geographic areas may need to inactivate all candidates for a day or two. The member recommended including a grace period for which the candidates are inactive that the program does not need to write a letter, particularly if the candidate is active again by the time the letter is sent.

Anonymous | 09/30/2025

I was appalled when I learned that transplant hospitals do not inform patients when they are moved from active to inactive status and that some patients unknowingly linger as inactive for years! I strongly support the need for hospitals 1) to inform patients of their status and 2) for hospitals to better manage their waitlists.

I also recommend that the OPTN develop a patient portal where patients can access their transplant information (such as their status). Some hospitals have great online tools - but not every hospital has these tools available for transplant. The OPTN should build a tool that allows patients to securely view their personal information that is submitted to the OPTN.

Additionally, I suggest that hospitals must inform patients so that patients understand what it means to be inactive. Too often, medical professionals use jargon that doesn't connect with patients. Hospitals should inform inactive patients that they will not receive organ offers when they are inactive and what needs to happen for the patient to become active and receive organ offers.

Anonymous | 09/30/2025

I support notification with documentation including conversations, but do NOT support written notification as multiple waitlist changes can happen within a few days, which could lead to confusion or miscommunication about the patient's true status. For example, if someone is made temporarily Inactive due to Insurance issues because the patient changed insurance companies, a letter going out to say that they have been made Inactive, but only a few days later insurance authorization could come through, with a new update to Active status and a new letter is sent. The patient then receives two letters saying two different things within the same week.
I believe it would further burden transplant programs to need to send a formal letter for every time a patient was made temporarily Inactive or returned to Active status. But I do believe the candidate should be notified that they are not eligible for organ offers until a set goal or specific guideline is met per the transplant center's policy. OPTN should require documentation of a status change, but a written notification is not necessary.

Global Liver Institute | 09/30/2025

Global Liver Institute strongly supports mandatory patient notification when waitlist status changes (active to inactive or vice versa). Notification is essential to patient dignity, transparency, and trust.

We are aware of cases where patients were inactivated or removed from the waitlist without any notice. Discovering this only months later, sometimes when an organ offer fails to arrive, is profoundly distressing and unacceptable.
Notifications must provide meaningful information, including why the change occurred, what steps (if any) the patient can take, and whom to contact for help or appeal. Patients should have the option to receive notifications by mail, portal, or phone, but all notification attempts must be documented in UNet or the medical record.

OPTN should also monitor compliance and provide transparency on how often notifications are sent and received. Patients should have a clear way to report failures to receive notice.

This policy change is modest but crucial. It ensures patients are active partners in the transplant process rather than passive bystanders and prevents unnecessary trauma. GLI urges OPTN to adopt notification requirements that are timely, documented, and informative.

Region 9 | 09/30/2025

Sentiment: 2 strongly support, 6 support, 0 neutral/abstain, 0 oppose, 0 strongly oppose

Comments: A member suggested considering notifications based on the length of time a patient has been inactive, especially for renal organs, to prevent errors such as temporary inactivation lasting up to six months or longer-term inactivations lasting 1–2 years. An attendee emphasized the importance of notifying patients and recommended offering both verbal and written notification options, noting that verbal communication may be more effective for some patients. A member expressed surprise that this isn’t already policy and supported the initiative, reiterating the need for verbal communication alongside written notification. An attendee shared that the original patient request was for an app or other digital access through the OPTN that allows patients to check their status 24/7. A member supported the proposal and strongly advocated for the rapid development of an OPTN-managed patient portal to provide timely access to listing status. An attendee stated that notifications should include the reason for the change to inactive status, allowing patients to work toward reactivation, and suggested that a phone call with chart documentation should suffice for status changes. A member recommended excluding inpatient changes and accepted verbal communications if properly documented. An attendee stressed the need for an OPTN-managed patient portal for verifying waitlist status. A member cautioned that overly complicated processes might confuse patients. An attendee emphasized, as a patient advocate and representative of an organization supporting individuals awaiting transplants, the critical importance of written notification regarding transplant listing status. While patient portals are useful, many patients face barriers such as age-related technology challenges, limited internet access, health conditions, and confusion stemming from informal conversations with providers. These issues can lead to misunderstandings about listing status, potentially delaying care. The commenter strongly advocated for multiple notification methods, including written letters for listing confirmation and status changes, phone calls for time-sensitive updates, and digital notifications as supplementary communication. Clear, written documentation was described as essential for patient safety and peace of mind.

American Society of Transplant Surgeons | 09/30/2025

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Anonymous | 09/30/2025

Support

Lorrinda Gray-Davis | 09/29/2025

I strongly support the requirement for patient notification of waitlist status changes, with a preference for electronic communication methods including text messaging, phone calls, email, or patient portal systems like MyChart.

Timely notification is essential because it empowers patients to become active participants in resolving issues that may affect their transplant eligibility problems they may not even be aware of without proper communication. When patients are informed promptly about status changes, they can work with their care teams to address medical, insurance, or administrative barriers that might otherwise keep them inactive on the waitlist.

I have witnessed firsthand the devastating impact that communication failures can have on transplant candidates. A close friend of mine experienced a prolonged period where her transplant team indicated she would be returned to active status following an illness, but this change was never actually implemented in the system. For three months, she remained by her phone waiting for "the call," not knowing she was still listed as inactive. The psychological toll of this situation was immense: the false hope, anxiety, and ultimate disappointment when she discovered the error significantly impacted her mental health during an already challenging time.

This experience illustrates exactly why standardized notification requirements are necessary. Electronic communication methods offer several advantages: they provide immediate delivery, allow for confirmation of receipt, and enable patients to quickly respond to address any issues.

While I understand concerns about administrative burden, electronic systems can actually reduce workload compared to traditional mail while providing superior patient care.

Patients deserve transparency in their transplant journey. Implementing flexible, electronic notification requirements will prevent the kind of communication breakdown my friend experienced and ensure that all candidates can actively participate in maintaining their transplant eligibility.

Anonymous | 09/29/2025

In some situations, patients are often made inactive on the waitlist for a short time (i.e. Have the flu, COVID, do not want an organ offer while on vacation) such as days to just a few weeks. I would not support mandatory written notification for these situations especially. Some of our wait listed patients prefer to receive notifications via mail (they are not tech savvy) and notifying them by mail may confuse the situation if one notification were received and the other was not. Sending a letter to the patient does not provide evidence that the patient understood the change. A phone call to the candidate with written documentation in the chart that they understood the change in status and what needed to happen for them to become active again on the wait list should be sufficient. This gives patients a chance to ask questions if they are not sure what the inactive status exactly means (some candidates may mistake being made inactive on the wait list means they were removed). I do feel that if a candidate is inactive for a prolonged period they should be notified both in writing and via phone call. It's the right thing to do for the candidate but should not be a regulatory requirement.

Rebecca Baranoff | 09/29/2025

As a transplant recipient I know first hand how stressful it can be to wait on "the list" for your call. I was also a Dialysis social worker for 14 years and worked with many patients who were off the list and were never really sure why.

I think it is important that patients are advised if they are removed from the list, even if temporarily. I think the best method would be to use the patient portal and noting that a letter will also follow in the mail. There are still people who want a hard copy of their medical information.

I would also like to see as part pf this notification the reason why the patient is inactive and what, if anything they might have to do to get re-activated.

Steven Weitzen | 09/28/2025

Patients need to be notified. I, personally, have heard of persons who were never notified that they had become inactive. Personal (by phone or portal) AND written (mail) notification is preferable to avoid those situations where a call/portal message is never sent or missed. Some expressed fear of confusion if a letter in the mail arrives after a phone call or portal message. I would suggest that any phone/personal/portal message include a statement that a letter will be arriving with respect to the topic.

American Society for Histocompatibility and Immunogenetics (ASHI) | 09/26/2025

This proposal is not pertinent to ASHI or its members.

VA Pittsburgh Healthcare System | 09/26/2025

Support

Anonymous | 09/26/2025

This is a CMS Transplant Regulation and does not require an OPTN Policy for compliance. CMS requires notification within 10 calendar days which is sufficient for timing and method of choice for each transplant program based on transplant policies or SOP.

International Society for Heart and Lung Transplantation | 09/26/2025

Please reference attachment.

View attachment from International Society for Heart and Lung Transplantation

OPTN Lung Transplantation Committee | 09/26/2025

The OPTN Lung Transplantation Committee thanks the OPTN Transplant Coordinators Committee for their work to ensure candidates are notified whenever their waitlist status changes from active to inactive or inactive to active.

Some Committee members expressed concern regarding a requirement for written notification, as heart and lung candidates are frequently inactivated and reactivated within short intervals. These members noted that a written requirement could result in letters arriving after reactivation, creating confusion and burden. Members also expressed that a requirement for written notification upon waitlist status changes could result in additional administrative burden for transplant coordinators. A patient representative emphasized that written documentation remains valuable because it provides a trackable record that can be shared among multiple caregivers.

Family Lifestyle Solutions LLC | 09/26/2025

This month marked one year anniversary of my nephew, receiving his kidney transplant. I am grateful that he received his kidney it wasn’t a very long wait, but there were times when a call would come to say that one was available, and then say no, it has to go to someone else. Establishing waitlist status and the most chronicle order and timely is better and it’s probably the best solution for families waiting for transplants.

Vanderbilt University Medical Center | 09/25/2025

On behalf of Vanderbilt Transplant Center, we appreciate the opportunity to provide feedback on this proposal. In general, we support the initiative to increase system transparency and empower patients in managing their listing status, as well as standardizing patient notification requirements. However, in our opinion a written status change letter is not necessary and will lead to an increased documentation burden. Instead, we propose that electronic medical record (EMR) documentation serve as the standard, particularly given ongoing efforts by EMR vendors (Epic Transplant Journey) to make the transplant process more accessible and transparent for patients. Instances such as brief inactivation followed by a written inactivation notice after reactivation has already occurred undermine the goal of making the process more understandable and accessible to patients.

American Nephrology Nurses Association (ANNA) | 09/24/2025

ANNA agrees. We support transparency, clear expectations, and communication of what it means to be active or inactive on the waitlist. Some centers already have this practice in place, so it would not be a change for all centers. Communication in writing is always a good idea; this can be sent to the patient and saved in their chart/patient portal/electronic medical record.  

Region 5 | 09/24/2025

Sentiment: 10 strongly support, 14 support, 0 neutral/abstain, 2 oppose, 0 strongly oppose

Comments: One attendee thanked the committee for moving forward with this initiative. Another attendee commented that the volume of letters could be confusing for candidates who experience multiple status changes in a short period of time. Similarly, one attendee felt that very short periods of inactivity, such as less than 24 hours for a fever or a few days for an insurance change, would make written letters unnecessary and potentially confusing, since patients could receive multiple letters in the mail on the same day. Several attendees agreed that letters are not always practical, as patients do not always check their mail daily, and mailed notification is an outdated way to update patients on their care. They supported verbal or electronic communication documented in the medical record as sufficient and noted that this is already standard practice within many transplant programs.

Another attendee commented that they supported the proposal overall and believe that some type of written or electronic mechanism is necessary to trace that the patient has been updated. They added that, ultimately, they would like to see a centralized portal through HRSA where patients could log in and view their status. Several attendees also recommended aligning OPTN policy with CMS practice requirements, noting that as written, the proposal may seem redundant. One attendee stressed that providing more information to patients beyond the fact that their status has changed is essential, since patients need clear guidance and tools to understand the reasons for the change and what actions they can take. Multiple attendees supported the requirement for notification of status changes but felt strongly that centers should have flexibility in how this is done. Some suggested letters could be reserved for patients who remain inactive for longer periods, such as six months or more, when conversations may be forgotten. Another attendee suggested simplifying the process by allowing patients to choose their preferred method of notification, electronic or paper, and excluding in-house patients from the requirement. Several attendees commented that waitlist changes expected to be short-term, such as less than a month, should not require notification because this could increase patient confusion while providing little benefit. Another attendee added that communication should be required when a patient is made inactive, but not for changes within heart status levels. 

Region 10 | 09/24/2025

Sentiment: 2 strongly support, 8 support, 5 neutral/abstain, 4 oppose, 0 strongly oppose

Comments: Attendees agreed that notification of waitlist status changes is essential for candidates but expressed strong concerns about mandating written letters as the only form of communication. Many emphasized that status changes can occur quickly, and written letters may arrive too late, be received out of order, or discourage programs from making timely updates. Some noted that patients often mistake hospital letters for bills and do not open them, further undermining the effectiveness of this approach. The majority supported permitting electronic medical record (EMR) documentation, patient portals, phone calls, and emails as valid alternatives to letters, provided that communication is properly documented in the patient’s record. These methods were described as more immediate, reliable, and less burdensome. Several attendees underscored the administrative challenge of letters: based on one estimate, a center with 1,000 candidates could generate 18,000 letters annually if required for every status change. A recurring theme was patient empowerment and clarity. Attendees suggested capturing patient communication preferences at intake, steering patients toward portals, and creating a centralized way for candidates to access their status, possibly through the OPTN computer system. This would reduce confusion, as patients often struggle to understand their current status. While most argued against mandatory written letters, some attendees supported a hybrid approach. They suggested that written notification should follow electronic or phone communication, particularly in cases of inactivity, so that patients have a physical record of the change. However, others cautioned that this would still create extra burden and might cause delays or confusion if letters arrived out of sequence. The prevailing view was that programs should retain flexibility. Properly documented communication by phone, portal, EMR, or email should be sufficient in most circumstances, while written letters should be used at the program’s discretion rather than as a blanket requirement.

University of Arkansas for Medical Sciences | 09/23/2025

We appreciate the opportunity to provide feedback on the OPTN proposal to Require Patient Notification for Waitlist Status Changes. Our transplant center already follows a comprehensive notification process, informing patients when they are placed on the waitlist, when evaluation is complete and they will not be listed, when they are removed from the waitlist, and whenever their waitlist status changes. We strongly support the principle that patients should be active participants in their care, and we view timely communication regarding waitlist status as essential. Prompt notification enables patients to address any issues affecting their status, fosters clear communication with the transplant team, and strengthens trust between patients and providers. While our center currently uses both telephone calls and mailed letters for notification, we recognize the administrative burden associated with sending physical letters and believe that the communication method should be left to the discretion of each transplant center. Finally, we agree that a timeframe of 10 business days for notification is appropriate, as it aligns with existing requirements for other patient notification processes.

The Mended Hearts, Inc. | 09/22/2025

The Mended Hearts, Inc. is the nation’s largest patient peer-to-peer support network with over 127,000 members, providing support, education and advocacy on behalf of cardiovascular and transplant patients. We strongly support the proposed policy to require patient notification of waitlist status changes. This change is crucial for transparency and empowering patients to actively participate in their care.
We recommend that this policy allow for flexibility in communication methods. While written letters are a valid option, they may not be the most effective for all patients due to potential delays and the high administrative burden on transplant centers. Patients have diverse communication preferences, and options like phone calls, patient portals, or secure electronic messaging can ensure timely and efficient updates. Ultimately, the goal is to provide patients with the information they need in a clear and accessible format and allowing multiple communication methods will help achieve that.

Gift of Life Michigan | 09/22/2025

We appreciate the Transplant Coordinators Committee’s (TCC) work on this important policy update. We strongly support the TCC’s recommendation to notify patients of changes to their listing status. The statistics cited within the recommendation reflect very high rates of incomplete workups and other factors that lead to inactive status. We believe it is essential for the integrity of the transplant system that transparency and communication are mainstays of the relationship between the center and its patients.

We also believe modern technology provides myriad ways to communicate with patients, and so long as communication, regardless of method, is documented, the way in which a patient is informed of their status always is secondary to their being notified.

Region 6 | 09/19/2025

Sentiment: 0 strongly support, 2 support, 5 neutral/abstain, 0 oppose, 2 strongly oppose

Comments: Several attendees commented that they were in favor of patient notification but recommend that other forms of communication be acceptable for the notification. One added that a written letter is archaic, burdensome and inefficient. Another attendee added that mail is often delayed and many times status changes can be short term, so by the time a patient gets the written notification it would be outdated. Another attendee commented that you can also confirm that a patient has read the message in MyChart or a phone call, which you cannot do with mailed letters. One attendee commented that mail delivery in rural communities struggles sometimes, even going beyond 10+ days. They agreed that MyChart or a phone call would be the most feasible. Another attendee commented that not every patient has MyChart and would caution us not to require written notification. Phone calls would be more appropriate for those patients. Another attendee commented that the Portland VA serves veterans from Florida to Hawaii and Guam, so mailing is inefficient in terms of prompt notification. Another attendee recommended allowing for notification to be sent via any reliable method within 10-days of receiving status modification with appropriate documentation of notification attempts. Another attendee commented that for short inactivation’s of less than a week, it seems like a lot of additional work and may be confusing to patients if they are required to send them something in writing. One attendee commented that their center is already notifying patients of status changes, and it has greatly improved communication amongst patients and care teams. Another attendee commented that requiring patient notification would place undue burden on centers with large waitlists and for patients that have frequent changes. They supported allowing for other methods of notification such as secure messaging and phone calls. They added that requiring written notification would place further burden on centers when there are frequent changes to a patient's active vs inactive status (within several days).

Chiquita Johnson | 09/15/2025

As a patient that was unlisted at Piedmont Mason Transplant due to suspected cancer diagnosis in 2019-2020, I was never notified by my coordinator. I was only made aware of the situation when I received the yearly notification letter that it was time to get all the testing to remain listed. When I called the coordinator to schedule, she just offhandedly commented “oh you don’t need to do that…” I was floored, shocked and felt totally disrespected!! I questioned her regarding the reason and she seemed offended and disavowed any responsibility to have notified me or to acknowledge the irony of the situation. I cannot tell you how devastated I was. Here these people are in control of your life and not a consideration or feeling or respect for you as a person. What made it even worse, my dialysis clinic was notified and the social worker there did not tell me either! I reported her to the nurse manager and demanded a copy it the letter stating I was inactivated. This change is much needed! Ultimately, I had to have a bone marrow biopsy. This was because the Epogen I was taking at the time, marketed to us was ineffective in the dialysis population but fine for cancer patients. I believe the company that manufactured it was ultimately sued the the government. I was transplanted in May of 2021.

Region 7 | 09/12/2025

Sentiment: 5 strongly support, 6 support, 3 neutral/abstain, 3 oppose, 0 strongly oppose

Comments: Attendees discussed the proposal to notify patients of waitlist status changes, focusing on both transparency and administrative burden. Several asked for clarification on what constitutes a status change—whether it includes only active/inactive changes or also shifts in score or priority. While many supported transparency and emphasized the importance of patients being informed, concerns were raised about the burden for centers, especially when patients fluctuate between active and inactive frequently or when temporary inactivation occurs. Some noted past discussions of this issue in 2012 and 2016, highlighting the need to balance patient involvement with practical implementation. Many centers reported they already provide verbal notification documented in the medical record, with some assuming this was already required. There was broad support for allowing flexibility in notification methods, including patient portals, phone calls, in-person discussions, and electronic messages, rather than mandating written letters, which could cause delays and confusion. Some attendees recommended making this a best practice rather than a regulatory requirement and suggested collecting data on administrative burden if implemented. Others emphasized that documentation of communication in the EMR should be sufficient for compliance. Overall, there was agreement on the importance of keeping patients informed, but concerns remain about feasibility, administrative workload, and whether written notification should be mandatory.

Region 8 | 09/12/2025

Sentiment: 1 strongly support, 11 support, 1 neutral/abstain, 6 oppose, 0 strongly oppose

Comments: Several attendees noted support for patient notification but favored phone calls or patient portal messages over mailed letters, citing short inactive periods and the risk of confusion from delays or out-of-order delivery. Some attendees noted that inactivation may last only hours or a few days, and requiring written notification in such cases would create unnecessary burden. Others went further, expressing opposition to requiring any notification at all for inactivations lasting fewer than 10 days. There was support for ensuring patients are informed not only of status changes but also of the reasons behind them. Attendees emphasized the importance of transparency and fairness, with some highlighting that timely communication allows patients to address issues that led to inactivation. At the same time, several expressed concern about the administrative burden on transplant center staff if written notification within 10 days were required for every change, particularly when multiple changes occur in a short time. It was recommended that phone or portal communication, with proper documentation in the electronic medical record, should satisfy notification requirements. This approach would both reduce workload and better reflect real-time care decisions. Attendees agreed that standardized guidance on the content of patient notifications would be useful but argued that centers should have flexibility in choosing the communication method. Some also raised questions about how compliance would be monitored if notifications were verbal or electronic.

Marquita Sylvia | 09/11/2025

Patients should be notified of changes in waitlist status. This notification improves transparency during the pre-transplant process and provides patients with information that can be used to address issues related to their status. It not only provides information, it empowers patients. Providing them with an opportunity to act and work with their transplant team. When I was informed that I was on "inactive" status. I asked my pre-transplanted coordinator, "What do I need to to do?" And with the information provided, I created a checklist of items to work on on for myself and with my providers. And, as I completed items on the checklist I shared that information with my pre-transplant coordinator. The notification and information helped me to focus exactly on what I needed to do in order to change my status to "active".

Support for this proposed change in policy shows that waitlist inactivity is linked to higher mortality rates for all kidney transplant patients. Without knowing that I was "inactive" and the reasons for that status, I could have languished on that list as one of those unfortunate statistics - on the list but not active. As an African American woman, with other Latino and African American patients, we are overrepresented in that group. I believe this requirement will save lives.

Fortunately, my pre-transplant coordinator provided me with notification of my waitlist status change. And, I know, it has improved my health AND my chances of a successful kidney transplant. As a requirement, this change could effectively improve outcomes and lower mortality rates for all patients and especially Latino and African Americans. Sending letters may be burdensome for transplant programs. Some more efficient (less burdensome than "snail mail") method of communicating status should be used. And perhaps some other organization with this information, can take on the responsibility. Most importantly, in addition to notifying the patient of their change in status, patients should be instructed to contact their transplant program to discuss, not only the change in waitlist status, but, also the reasons for the change. A conversation with someone on the transplant team should occur.

Region 11 | 09/11/2025

Sentiment: 6 strongly support, 10 support, 2 neutral/abstain, 1 oppose, 4 strongly oppose

Comments: A member noted that a standardized communication form with reasons for change of status would increase administrative burden and require approved funding, and recommended each center create a QAPI process to avoid confusing messaging. An attendee shared that their center already performs this communication and finds it useful for patients. A member requested guidance on whether notification should be via phone call or letter. An attendee did not support requiring written notification to candidates, citing clinical and logistical challenges, and advocated for individualized, patient-centered communication documented in the medical record. A member expressed support for formalizing this in OPTN policy. An attendee shared that lack of communication about waitlist status impacted their family and recommended electronic and written communication to both patients and caregivers. A member supported notifications, with detail when warranted, but raised concerns about lack of flexibility in EMR use and reliance on paper, especially during unusual circumstances, such as the pandemic, for example. An attendee strongly supported the policy as a transplant recipient family member but did not believe a mailed letter was necessary if outreach was documented, and suggested future inclusion of offer filter notifications. A member supported notifying patients of status changes as part of current practice but opposed requiring formal letters for every change, citing increased workload and the temporary nature of some changes. An attendee agreed candidates should be informed of listing status but recommended modifications to include notifying legal next of kin and allowing phone calls with documentation to meet the requirement. They added that if a candidate had multiple changes in status every week, receiving multiple letters could be extremely confusing to the patient. A member expressed concern that most patients do not understand the waitlist and that the policy could increase workload for transplant centers. An attendee emphasized the need to clarify what counts as notification, noting that not all patients have portal access and that letters may be confusing with frequent status changes. A member encouraged a system that informs patients and their families, but that having more than one channel of notification may be most effective.

Heather Crego | 09/11/2025

We should be having documented conversations with patients about their wait list status changes no matter what the reason. After 20 years, I still encounter candidates who equate inactivity with removal. However, I don't believe a letter will fix this. Candidates do not read everything we give them from education materials to letters; they find written material overwhelming no matter how simplified. A mandatory letter with every status change will overburden transplant centers and transplant coordinators. Patient notification should be communicated but how it is completed should be left up to the transplant center and the format that works for them and their candidates.

Region 3 | 09/10/2025

Sentiment: 2 strongly support, 5 support, 2 neutral/abstain, 1 oppose, 0 strongly oppose

Comments: Several attendees commented that patients should be notified promptly about waitlist status changes, but the policy should align with CMS requirements and allow flexibility in how programs communicate (phone, portal, clinic discussion, or letter). One attendee commented that written letters should be required to ensure family members or caregivers understand the change and can help patients, especially those who may face language or financial barriers. There was also feedback from several attendees that patient notification should not be required in cases of patient death.

Glenna Frey | 09/10/2025

Patients deserve clarity about their waitlist status, and timely notification is essential. Too many individuals are left uncertain, which causes unnecessary confusion and stress. Requiring transplant centers to provide transparent, prompt updates ensures patients receive the critical information they have a right to know. I strongly support this policy.

Anonymous | 09/09/2025

This would cause a lot of extra work for coordinators. And often the notification of being put on status 7 is stressful to the patients without a spoken conversation to explain. Patients receiving a letter that they on hold while in the hospital on antibiotics could be excessively stressful. I understand speaking with a patient when they change status. But a letter for every one is too much.

Lainie Ross | 09/08/2025

It is critical to have it in writing or there will be a she said/he said disagreement. A paper trail is important for transparency.

Anonymous | 09/04/2025

Notification should be required but does not need to be written letter. With our mail system these days 10 days may be expired before these letters reach the patent. Transplant Centers should have the option to document via their Medical Records of notification whether it was a phone call or electronic notice (sent via email or thru Epic MyChart / their medical record system).

Robin Petersen-Webster | 09/04/2025

I support patient notification of status change, however I feel a written letter may prove to be a burden on the center and, in the event of a quick turnaround in status, may be confusing to the candidate. There are many times candidates are inactive for only a day or two, this may result in letters for both events arriving the same day which can lead to confusion. Our current practice is to notify by phone call and/or patient portal. While I support the proposal in general, I feel the written notification should not be required if notification has occurred in another manner and is documented in the medical record.

Cody Reynolds | 09/03/2025

I support using an electronic method such as MyChart or telephone. My opinion is the mail seems unrealistic, especially in rural areas where delivery times can vary. It's a best practice when patients and families are aware of their listing status.

Jullie Hoggan | 08/28/2025

It is a significant event when a patient’s waitlist status changes. Patients must be notified to remain engaged in their care and to take corrective action when possible. Without notification, they cannot be full participants in their treatment.

Because this information is critical, the same standards should apply as when patients are approved for or removed from the waitlist. Patients should receive written documentation, including the reason for the change, to ensure transparency, empower action, and provide a permanent record.

This requirement will add some burden to transplant centers, but it is a necessary part of patient-centered care. Keeping patients fully informed of changes to their treatment plan is necessary to ensure they are partners in their care.

Anonymous | 08/28/2025

I believe that we should be required to notify patients of their status change, but I do not think that they need a letter whenever they are made active or inactive. I believe this would be clutter to the patients and to the patient's record, especially for patients who may have frequent status changes. Notification of the patient's status change should be the standard of care and should be charted in the patient's chart. Notification by letter I believe would be more work on behalf of the coordinators, who are already managing significant case loads and they should be in contact with their patients already.

Jordan Shouey | 08/28/2025

Notifying patients when they are inactivated and reactivated is a best practice, and guidance on documentation of the change should be standardized in the bylaws. There may be value considering documentation of a conversation (in person, via phone) between a patient and HCP as adequate patient notification when these changes occur.

If a patient on the transplant waitlist chooses to take three consecutive weekend trips outside the transplant center's distance requirement, a written letter for status 7 on Friday evening, and written letter for reactivation on Monday morning for each trip feels like excessive administrative process given the scenario. A waitlist patient traveling to see their kid play an away game outside the hospital's range is another scenario where means of notification about status 7 (other than written letter) could be more practical.

It seems like documentation of the patient's understanding about temporary inactivation / reactivation on the waitlist could be adequately captured within the medical record. Timestamps about the conversations and associated listing changes in UNet would still be easy to audit / trace during regulatory surveys.

For medical barriers to transplant such as excessive BMI, new allosensitization, or VAD implant, I can see value in that being conveyed in writing, as the resolution to the situation is not as immediate as travel. If a written notification of inactivation / reactivation is established, there may be value considering this requirement solely for medically-driven status 7 changes.

Anonymous | 08/28/2025

Patients should always be notified of their waitlist status. This is the most basic of care. However, documentation of the notification should not require a letter. Our center has always placed a note in the medical record stating when the patient was notified and by whom. This should be sufficient.

Anonymous | 08/28/2025

Yes, patients should be notified of any status changes to their listing. I've worked in this field for 25 years, and patients are often unclear of their status on the list often assuming they are listed when they are not, or that they are actively listed when they have been made inactive. In order to offset increases to the workload at transplant centers, which I have seen people use as a reason not to notify, have the patient contact info (email) added to UNET. Automate the system to send an email notifying the patient of any status changes when they are done in UNET.

Terri Milton | 08/27/2025

In the midst of a busy center, it is imperative to keep the care of the patient foremost. The simple task of informing a patient in writing of a change to status should be a standard for all transplant centers, and be considered an integral component of the systems in place. It places the care of the patient and their needs to know above the convenience of not having to send out a letter. Furthermore, it should be standard practice that a written notification is a follow up to a personal phone call from the designated person from that center.

Anonymous | 08/27/2025

Mandating how programs provide notification is potentially causing additional work and expense. Patients are often inactivated at their request due to travel or other life circumstances. Most other times there is a phone call between the transplant team and patient/care-giver. Requiring a letter is redundant and creates administrative burden for the transplant team. Mandating communication would be fine, requiring it to be a letter is not useful.

Keith Plummer | 08/27/2025

I strongly believe that patients must be contacted! I don’t believe it has to be in writing, I think call, text or Portal communication is fine. I would like to see this information to include if being held what has to be done to be active again. The patients being returned to active status should be give an estimate or best guess as to place on the list.

Melanie Wickersheim | 08/27/2025

My kidney transplant program shutdown suddenly a few months ago (Abbott Northwestern in MN). Patients were given notice of this closure and inactive status 3-7 days later. Some electronic letters were lost in a a deeply defective MyChart portal that has been problematic and nearly useless for years. It can take months for patients to be re-established at another center, and in that time, they cannot receive offers — putting their lives at risk. This is unacceptable.

Patients should be updated in writing AND through conversation (in person or phone, not voicemail) of change in status and, in the case of program CLOSURE, we should be notified WELL IN ADVANCE so that we might re-establish ourselves in time to avoid losing life-saving offers. This current practice is unethical and in desperate need of reform. Programs should be held accountable with large fines to prevent the appeal of sudden closure as a cost-saving measure.

Anonymous | 08/27/2025

I believe that a phone call with documentation in the EMR is sufficient. I do not believe a written communication should be required.

Vivian Gavin | 08/27/2025

I work with hundreds of kidney waitlist patient, one of the most frustrated issues is patient or dialysis unit stated they are not informed of the status change (from active to inactive or vice versa). I have to deal with this on my daily basis and the most frustrating issue is to deal with an upset patient about the status changes that they are not aware of, particularly from active to inactive status although the notification letter was sent in the portal. Our transplant center policy is to send a letter in the portal notifying patient about the changes within 10 days. I think this notification should be send via regular mail only to ensure pt receive in writing, conjunction with an automatic phone call notifying patient of the status changes, pt should have the option to reach out to transplant coordinator regarding of such or not to do as they wish. This encourages patient proactive engagement with their team rather than relying solely the responsibility on the transplant team. Thank you for considering my humble opinion.

Nancy Marlin | 08/27/2025

When I talk with waitlisted patients, they are often dismayed to learn that they have been placed in inactive status - and they did not even know that this status change had occurred! I strongly support sharing such notifications with patients.

Anonymous | 08/27/2025

Alternative forms of communication with candidates (by phone or in a conversation) would be acceptable if still documented in the candidate’s record

Anonymous | 08/27/2025

I have received two liver transplants. My wait time for each was 18 months. It was important to receive updates for my psychological well-being.

Kathy Elliston | 08/27/2025

A policy to provide waitlist STATUS to participants should be instituted immediately. Unless you have been on the Waitlist you have no idea the day-to-day anxieties experienced when on the waitlist.

Ryan Helmick | 08/27/2025

Engaging patients with their current status should help to make them better partners in their care. Requiring centers to provide written updates, however, does not make sense. There is an added expense to sending out mail, and it is a slow process. Further, patients should have the option to elect how they would prefer to receive updates, whether mail, email, text or on the phone.

Anonymous | 08/27/2025

I believe all patients should be required to be notified formally in writing about any status changes.

Anonymous | 08/27/2025

Agree patients should be notified. Notification options should include letter, note documenting the conversation in the chart and/or electronic messaging. Sending electronic messages allows for patients to receive the information immediately on their phone

Susan Rackley | 08/27/2025

As a patient, it is imperative that there is good communication throughout the process. Notifications would help ease worries and keep the patient informed about what was going on with their waitlist status.