Comments

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, 6 support, 2 neutral/abstain, 2 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.