Update on Lung Continuous Distribution Policy

Watching someone you love struggle to breathe is something no family is ever truly prepared for. Every day brings new challenges, but it also reminds me of the incredible strength, resilience, and determination my mother has shown throughout this journey. As her PCA, I assist with her daily care and do everything I can to help her maintain her comfort, dignity, and independence while we wait for the call that could change her life.

This experience has shown me the profound impact that compassionate care, medical professionals, organ donors, and supportive organizations have on families like ours. The emotional, physical, and financial challenges of waiting for a transplant can be overwhelming, but the encouragement and resources provided by organizations that support transplant patients offer hope during some of our most difficult days.

Our family remains hopeful that my mother will receive the precious gift of a second chance through a double lung transplant. Until that day comes, we will continue to face each day with faith, perseverance, and gratitude for everyone who stands beside patients and caregivers throughout this journey.

Dear Members of the HRSA/OPTN Board of Directors,

I am writing to express my strong opposition to the decision made at the November 20, 2025 OPTN Board meeting to remove five points from categories describing a transplant candidate's medical condition and reallocate them to the placement efficiency category, in an effort to address concerns about Allocation Out of Sequence (AOOS). I am requesting that HRSA and the OPTN Board reverse this decision and restore the CAS point allocation and ratios to their pre-November 20, 2025 levels.

As a Psychiatric Nurse Practitioner, I see firsthand how a patient's clinical trajectory is inseparable from their mental health. Waiting for a transplant is already one of the most psychologically taxing experiences a patient and their family can face, and I have witnessed how a decision as consequential as a sudden shift in one's place on the waiting list can compound that distress, introducing new anxiety, hopelessness, and a sense of instability at a time when patients most need to trust that the system guiding their care is fair and grounded in sound medical judgment. Mental health is not separate from transplant outcomes; it directly affects a patient's ability to cope with their illness and engage with their care.

Beyond my clinical specialty, I hold a deep commitment to evidence-based decision-making in every area of medicine. Decisions with life-and-death consequences, such as where someone falls on a transplant waiting list, must be grounded in rigorous data and clear evidence that they will reduce, not increase, mortality. When a policy change of this magnitude is made without that evidentiary foundation, it undermines both patient outcomes and patient trust, and it is that combination, the psychological toll on patients and the abandonment of evidence-based practice, that compels me to ask the Board to reverse this decision.

In addition, I share the concerns raised in the Lung Transplant Foundation's letter to HRSA and the OPTN Board, submitted through the Critical Comments and Directives Pathway on April 13, 2026, and co-signed by seventeen distinct lung disease patient advocacy organizations. That letter, and the broader transplant community, has identified the following core problems with how this change was made:

-No public comment period. In a break from decades of established protocol, this major policy change was implemented without a prospective public comment period, and no clinical evidence was presented to justify use of an emergency pathway at the time of the vote.

-The Lung Committee's unanimous opposition was disregarded. No clinical rationale was offered for overriding the Lung Committee's unanimous recommendation against this change, and no solutions were proposed to address initial modeling suggesting the change would increase waitlist mortality for high-risk individuals.

-Moving from extensive modeling before policy changes to minimal modeling with the intention of catching problems after they occur unnecessarily endangers lives. Decisions with life-and-death consequences demand the scientific rigor and modeling this type of change deserves.

-Patient and expert voices must be centered throughout. Patient voices and specialized lung transplant expert opinion should be central at every stage of OPTN policy development, from identifying problems, to proposing solutions, to implementing new policy.

As someone who cares deeply about equitable organ allocation, I recognize and appreciate the goal of improving policy compliance and reducing Allocation Out of Sequence. However, increasing the weight of placement efficiency from 10% to 15% risks unintentionally reducing access for patients who already face biological disadvantages, including candidates with uncommon blood types, high CPRA, shorter stature, and pediatric patients. Reducing travel distance and logistical complexity are worthwhile goals, but they should not come at the expense of medical urgency or equitable access to life-saving transplants. Without sufficient supporting data, these changes risk unintended consequences, particularly increased waitlist mortality among the most vulnerable candidates.

Thank you for the opportunity to comment and for your continued work toward a fair, transparent, and effective lung allocation system. I respectfully ask that, in light of this near-unanimous opposition by lung transplant professionals and the community most affected by this decision, HRSA and the OPTN Board will reverse the November 20, 2025 vote and restore the CAS to its previous structure.

Sincerely,

Marci Gleicher
Psychiatric Nurse Practitioner

Janice Doyle
State of Residence: Maryland

Relationship to Lung Transplant: Lung Transplant Candidate/Recipient

Regarding the November 20, 2025 OPTN Board meeting vote to alter the Lung Transplant Continuous Allocation Score (CAS) points and ratios in order to address concerns about Allocation out of Sequence (AOOS).

I am writing to express my strong desire for HRSA/OPTN Board to reverse the decision voted on during the November 20, 2025 Board meeting to remove five points from categories describing a recipient's medical condition and reallocating them to the efficiency category, returning the CAS point allocation and ratios to the pre November 20, 2025 vote levels.

This matters to me because I have been blessed by receiving a double lung transplant over 12 years ago. My prayer is that other people in need of lung transplants will have extra bonus life just like I have.

Additionally, I share the concerns expressed by the Lung Transplant Foundation letter directed to HRSA and the OPTN Board of Directors, submitted via the Critical Comments and Directives Pathway on April 13, 2026, and signed on to by seventeen distinct lung disease patient advocacy organizations, identifying the following primary concern areas as reasons to oppose this change to the CAS:

- Bucking decades of protocol, no prospective public comment period occurred before this major policy change, and no clinical evidence was supplied justifying the use of the emergency pathway at the time of the vote.
- No clinical rationale was given for ignoring the recommendation of the Lung Committee, which unanimously opposed this change to the CAS, and no solutions were proposed to address the concern that initial modeling suggested that these changes would increase the waitlist mortality for high-risk individuals.
- The change in protocol from extensive modeling before policy changes are implemented to minimal modeling with an intention of catching problems after they occur will endanger lives unnecessarily.
- Patient voices and specialized lung transplant expert opinion should be centered at every stage of OPTN policy development, including the identification of problems, proposed solutions, and the implementation of new policy geared at addressing identified problems.

Thank you again for the opportunity to comment. I sincerely hope that, based on the consistent and unanimous dissent from lung transplant professionals, lung transplant candidates/recipients, and community members, HRSA and the OPTN Board of Directors will reverse the November 20, 2025 vote and restore the CAS to its previous point and ratio allocation.

Sincerely,
Janice Doyle

The current allocation system is in need of a change to address issues related to transplant programs practicing in low donor density areas.

Rural programs and rural waitlisted patients are already at disproportionate access to transplant resources in general. NEUN understands the unintended consequences of how the allocation system has impacted a rural program into reducing the number of local donors, increasing ischemic times, and increasing distance to donors.

In 2018 - pre-CAS implementation: we had 11 transplants:
• 18.2% local donors
• 55.6% of total ischemic time fell into the 271-360 minutes
• Average donor hospital distance: 185 miles
• Median donor hospital distance: 209 miles

In 2015 - post-CAS implementation: we had 11 transplants:
• 9.2% local donors
• 100% of total ischemic time fell into the 361+ minutes
• Average donor hospital distance: 681 miles
• Median donor hospital distance: 877 miles

We appreciate HRSA's efforts on this front and look forward to working with HRSA to address these challenges and provide the best possible service to our patients.

I am writing as a community member who believes that decisions affecting life-and-death medical care should be transparent, evidence-based, and informed by the people with the greatest clinical expertise and lived experience.

I understand the desire to improve placement efficiency. Reducing travel distance, improving logistics, and strengthening policy compliance are worthwhile goals.

What gives me pause is that these operational improvements appear to come with a reduced emphasis on factors related to patient medical condition and access. When a policy requires balancing efficiency with medical urgency, that tradeoff deserves careful evidence, broad transparency, and meaningful engagement with the experts and patient community who understand its real-world implications.

As someone outside the transplant profession, I am not qualified to judge the clinical merits of the Composite Allocation Score. What I can evaluate is confidence in the decision-making process. When I see that the Lung Committee reportedly opposed the change unanimously and that numerous patient advocacy organizations have raised concerns about both the evidence and the process, I believe those concerns warrant careful reconsideration rather than implementation first and evaluation later.

I respectfully encourage HRSA and the OPTN Board to revisit this policy through the normal review process, giving full consideration to the perspectives of transplant professionals, patients, caregivers, and researchers before making permanent changes that may affect access to life-saving transplants.

Thank you for the opportunity to comment.