Update on Lung Continuous Distribution Policy

Liz Melander
State of Residence: Arizona

Relationship to Lung Transplant: Caregiver/Community Member, Transplant Professional

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 worked with individuals in the list and post transplant on the pulmonary foor as an RN at CHOP for many years. I lost several patients who were listed but the lungs did not come in time.

Knowing that these changes are putting up additional barriers to these individuals fighting for breath every day is heartbreaking.

I am very well aware there are more people needing organs than organs to distribute from selfless individuals giving the ultimate gift of life. However, people shouldn’t lose their opportunity because their situation is slightly less efficient than someone else’s. Everyone on that list sits waiting for the phone to ring. Answering every call in case it’s “the call”. These people are ready to run at a moments notice and deserve that chance.

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,
Liz Melander

Lily Risden
State of Residence: Virginia

Relationship to Lung Transplant: Caregiver/Community Member

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 of Nico, a kind, loving, and incredibly special 3-year-old living with Hermansky-Pudlak syndrome (HPS). Although he does not currently need a lung transplant, HPS means that one could become necessary in the future. The decisions made today could affect children like Nico for years to come. I am advocating for him and every family who deserves a fair, medically driven transplant system that gives every patient the best possible chance when they need it most.

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,
Lily Risden

Ann Zivic
State of Residence: Wisconsin

Relationship to Lung Transplant: Caregiver/Community Member

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 personally experienced the complexity of the lung transplant process. My husband received a life saving double lung transplant two years ago. His medical team performed a very extensive workup before he was qualified for a lung transplant. Allocating less points to a recipient's medical condition and reallocating them to the efficiency category does not appear to prioritize patient care. The positive patient outcomes that are being achieved through what has been learned over many years of research and careful protocols are being threatened if this change moves forward.

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,
Ann Zivic

Every life matters. My son has HPS, a rare condition that carries the possibility of a lung transplant in his future. We are a family who understands what it means to wait, to hope, and to be grateful. Organ donation changes everything.

Kathy Austad
State of Residence: Minnesota

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 had a single lung transplant in 2015 when my lung disease became worse. I had been on the wait list for three years and was moved up the list when breathing required more assistance.

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,
Kathy Austad

Rick Dwelle
State of Residence: California

Relationship to Lung Transplant: Caregiver/Community Member

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 This is wrong to change the criteria for lung transplant recipients waiting for a transplant.

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,
Rick Dwelle

Sarah Russell
State of Residence: Oklahoma

Relationship to Lung Transplant: Caregiver/Community Member

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’m the mom of an amazing little boy living with Hermansky-Pudlak syndrome type 4. Right now, he’s a happy, active kid who loves swimming, building with Legos, and spending time with his family. But every day, I carry the knowledge that because of his rare disease, he may one day need a lung transplant to stay alive.

As a parent, that possibility is already terrifying. Knowing there may come a day when I have to wait for the call that could save my son’s life is something no family should have to face. The thought that policies could make it even harder for children like him to receive a transplant is heartbreaking.

Please don’t put placement efficiency ahead of medical necessity. Families like mine need to know that when our child’s life is on the line, decisions will be based on who needs that organ most, and not on what is most convenient.

My son deserves the same chance at a long, full life as any other child. I urge HRSA and the OPTN to keep patients first and protect fair, medically driven organ allocation for everyone, including those living with rare diseases like HPS4.

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,
Sarah Russell

Sandra Ocasio
State of Residence: Ohio

Relationship to Lung Transplant: Caregiver/Community Member

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 as a member of a community that will benefit of a lung donation/transplant I see how harmful this new cast system will be. It gives less chance to our members to have the gift of time and longer life. Also, the way this system is moving forward has lacked transparency, and information to the professionals and community as of how to provide for the transplantation process.

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,
Sandra Ocasio

My friend’s son is diagnosed with Hermansky Pudlak Syndrome. One day, he will develop pulmonary fibrosis and require a double lung transplant to save his life. It is critical that he and everyone needing new lungs have an equal opportunity to lungs available for transplant. This little boy is full of life and see the greatness in everything. We’d love to see a great future for him.

The Cystic Fibrosis (CF) Foundation appreciates the opportunity to comment on the Organ Procurement & Transplantation Network’s (OPTN’s) Update on Lung Continuous Distribution Policy proposal. The Foundation recognizes the importance of reducing lung allocation out of sequence (AOOS) and identifying mechanisms to improve the lung continuous distribution framework more broadly. However, we have significant reservations about both the process and substance of the OPTN policy change and are deeply concerned about the implications for both lung transplantation and the entirety of the organ procurement and transplantation system. For that reason, the Foundation strongly opposes this policy proposal and urges its immediate discontinuation.

Use of the Emergency Action Pathway Without Sufficient Rationale:

The CF Foundation recognizes that OPTN must have the ability to respond rapidly when urgent issues arise, and that the Emergency Action pathway is critical for doing so. However, given the information that OPTN has provided publicly, it is unclear how the Lung Continuous Distribution Policy proposal met the threshold for implementation through a mechanism designed for situations that require immediate intervention.

Per the OPTN Management and Membership Policies manual, the Emergency Action pathway is only appropriate if the policy proposal under discussion meets at least one of three criteria:

1. The proposal is necessitated by a pending statutory or regulatory change.
2. The proposal is required due to an emergent public health issue or patient safety factors.
3. The proposal is necessitated by a new medical device or technology that affects organ allocation.

In the full proposal document, OPTN states several times that emergency action was warranted for this policy change. However, it has not provided an explanation that justifies the use of the emergency action pathway based on the criteria listed above. The CF Foundation is extremely concerned that the use of the Emergency Action pathway without a clearly demonstrated need, as appears to have occurred in this case, may set a precedent for moving future policy changes forward before sufficient evidence to support those changes is available. Critically, it also denies stakeholders with the opportunity to meaningfully engage in the process, which may result in policies that negatively impact the community and a lack of confidence in OPTN decision-making.

Failure to Provide Adequate Time for Analysis of the Proposed Change:

Based on publicly available information, the Lung Transplantation Committee appears to have been given approximately one month to analyze potential changes to lung allocation and provide accompanying recommendations to OPTN. OPTN acknowledged the limitations that this deadline placed on the Lung Transplantation Committee several times during the discussion about the update to the continuous lung distribution policy; the meeting included multiple instances in which, due to the time constraint imposed by OPTN’s deadline, the Committee did not have the data necessary to answer specific questions—the answers to which may have impacted deliberations—from the OPTN Board.

OPTN has not adequately explained what made the implementation of this policy urgent enough that OPTN could not provide the Lung Transplantation Committee with the time necessary to perform the appropriate analyses—and, instead, pressed the Committee to select the “best” of several potential policy changes that the Committee was required to develop specifically as backup options should the OPTN choose to act.

Additional Evidence Needed for Consideration of the Proposed Change:

The Lung Transplantation Committee unanimously recommended that OPTN make “no change to lung placement efficiency at this time pending a monitoring period of trends in lung AOOS and identification of drivers of lung AOOS.” Though this is likely based at least in part on the time constraints imposed on the Committee, it is also unclear whether the available clinical evidence supports the need to implement a change to lung allocation as it currently stands.

The proposal cites AOOS as a key justification for increasing the weight assigned to placement efficiency from 10% to 15%. While reducing AOOS and promoting efficient organ placement are important goals, the data presented do not clearly demonstrate that the current weighting structure is the primary driver of AOOS or that the proposed change will meaningfully improve patient outcomes. Additionally, national data from the Scientific Registry of Transplant Recipients (SRTR) suggest a more nuanced picture of recent AOOS trends . Available data indicate that AOOS increased following implementation of lung continuous distribution but subsequently declined over time, with recent rates trending downward from peak levels.

While AOOS should continue to be monitored and addressed when appropriate, these trends raise important questions about whether permanent changes to geographic weighting are necessary. The CF Foundation believes that additional evidence is needed to demonstrate both the existence of a persistent problem and that the proposed solution will improve outcomes without adversely affecting patient access to transplantation.

Impact of the Proposed Change on Access for Biologically and Geographically Disadvantaged Candidates:

In providing its recommendation, the Lung Transplantation Committee was particularly concerned about the “unknown potential impact of change on lung AOOS compared to expected negative impact on candidates facing transplant rate disparities under the current system (e.g., short statured candidates).” The CF Foundation shares these concerns. Patients with characteristics that make donor matching more difficult—including blood type O candidates, sensitized candidates, and candidates with uncommon size-matching needs—may be adversely affected if geographic considerations receive greater weight in allocation decisions.

The CF Foundation is further concerned about the potential impact that increasing geographic prioritization by placing greater weight on donor-recipient proximity will have on the CF community. While improved placement efficiency may provide operational benefits, geographic prioritization can affect access for patients who already face challenges in obtaining suitable donor organs. Individuals with CF frequently require highly specialized transplant care and may depend on access to donor offers across broader geographic areas.

Continuous distribution was designed to balance multiple priorities while minimizing inequities in access to transplantation. Before permanently increasing the influence of geographic efficiency, the CF Foundation believes that OPTN should carefully assess the potential effects on access, equity, waitlist mortality, transplant opportunities, and outcomes.

In Summation:

For individuals with CF and other patients awaiting lung transplantation, allocation policy decisions can directly affect access to life-saving donor organs. Given procedural concerns regarding the use of the Emergency Action pathway, the lack of opportunity for the Lung Transplantation Committee to perform comprehensive analyses, available data on declining AOOS rates, and the risk of disproportionate impact on recipients who already face obstacles related to transplantation, the CF Foundation opposes this policy proposal and its permanent adoption.

Should this proposal remain under consideration, we strongly urge OPTN to allow the Lung Transplantation Committee to complete and publicly release the requested analyses; comprehensively evaluate the impact of this policy on patient access to transplantation, particularly for disadvantaged candidates; and provide stakeholders with an opportunity to review and provide additional commentary on further iterations of the proposal. Such transparency is essential to ensuring that allocation policy changes are evidence-based, equitable, and in the best interests of patients awaiting transplant.

Sincerely,

Mary Dwight
Senior Vice President and Chief Policy and Advocacy Officer
Cystic Fibrosis Foundation

Albert Faro, MD
Senior Vice President and Chief Medical Officer
Cystic Fibrosis Foundation

Beth Cooper
State of Residence: North Carolina

Relationship to Lung Transplant: Living Organ Donor, Caregiver/Community Member

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 We desparately need to restore the CAS to its previous point and ratio allocation. Lives depend on it.

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,
Beth Cooper

State of Residence: Michigan

Relationship to Lung Transplant: Caregiver/Community Member

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 love someone who is need of a lung transplant.

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.

Laura Bailey
State of Residence: Oregon

Relationship to Lung Transplant: Living Organ Donor, Caregiver/Community Member

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 of two factors. Firstly, I am the spouse and caregiver of a lung transplant recipient. My husband was dying of lung disease, with no discernable cause. He had none of the usual causes of lung disease. And yet, he was dying. His only hope was a lung transplant. He did everything "right" to go through the assessment process and be added to the transplant waiting list at the University of Washington Medical Center. We managed our lives around his illness and around our hope that he would remain alive and strong enough to receive a transplant. We trusted in the process that would ensure he was properly prioritized on the waiting list, and that when his time came to receive a donor organ, his medical team's decisions would be based on actual need of all patients on the waiting list. We trusted that the most needy patients would be prioritized to receive donor lungs. We trusted that there was no arbitrary system working against us in the background that would instead unduly prioritize geographic considerations. With the transportation and technology available in the United States, geographic efficiencies, we trusted, would have little or no impact on when he would be offered donor lungs. With everything else going on in our lives to keep him alive, we HAD to trust because we were powerless to have any control whatsoever over the allocation process running in the background of our lives. Patients and their families deserve to be able to trust in these background processes being based on greatest need, grounded in medical & clinical factors.

Secondly, I am also a registered organ donor, and I hope that some day my healthy lungs (and other organs/tissues) may help others. I need to trust that when that time comes, my donations will be made available to recipients based on solid medical, clinical, and FAIR procedures. I can envision no reason why geographical convenience or "efficiency" should factor into the distribution of my donations. This nation's transportation network, and the technology for supporting donated organs & tissues during transport from one corner of the US to the opposite corner are so sophisticated that my donations from Oregon can safely make their way to needy patients in any corner of the US. So, geographic considerations should not factor unduly into where my donations will be going.

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,
Laura Bailey

As a pediatric lung transplant physician, I am concerned that increasing the weight of placement efficiency while reducing the relative contribution of pediatric access and biologic factors may unintentionally disadvantage pediatric candidates.

Pediatric lung transplantation is rare and uniquely challenging. In 2024, only 29 pediatric lung transplants were performed nationally, compared with 3,375 adult transplants. Recent years have also seen a decline in pediatric transplant volume, highlighting the change in the pediatric population requiring lung transplantation. Because pediatric candidates require careful size, anatomic, blood type, and biologic matching, broad geographic sharing is often necessary to identify suitable donors.

Past allocation changes that improved access to donor lungs were associated with lower pediatric waitlist mortality and higher transplant rates. Pediatric waitlist deaths decreased from 32.2% to 25.0%, while transplantation increased from 42.4% to 50.9% following allocation reforms that expanded geographic access. These gains are especially important given the increasing complexity and severity of illness among pediatric lung transplant candidates, many of whom require prolonged hospitalization, mechanical ventilation, extracorporeal support, retransplantation, or management of significant sensitization.

I am also concerned by the lack of pediatric-specific data supporting this proposal. The public materials do provide basic modeling of the anticipated effects on pediatric transplant rates but lack insight into waitlist mortality, donor access, or offer acceptance patterns. Moreover, several components of the CAS were developed using broader populations and may not fully capture the unique risks, complexity, and urgency of pediatric lung transplant candidates. As a result, even modest changes to allocation weighting could disproportionately affect children and ultimately impact survival.

While it has been suggested that the proposed changes are unlikely to significantly affect pediatric candidates, the pediatric lung transplant population is so small that adverse effects may take years to detect. With only a few dozen pediatric transplants performed annually nationwide, even a small reduction in access to suitable donor lungs could translate into increased waitlist mortality and devastating consequences for children and families awaiting a lifesaving transplant.

Before permanently increasing the weight of placement efficiency, I encourage HRSA and OPTN to provide pediatric-specific analyses of transplant access, waitlist mortality, and outcomes. Efforts to improve allocation efficiency should not come at the expense of equitable access for children, whose survival often depends on broad geographic access to appropriately matched donor lungs.
Thank you for your consideration of these comments and for your continued commitment to improving access and outcomes for all lung transplant candidates, including children.

Kristen Bushaw
State of Residence: Colorado

Relationship to Lung Transplant: Caregiver/Community Member

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 my son is 13 years old and one day he will need a lung transplant. The proposed changes will negatively impact the possibility of him receiving lungs in the future. These changes were made without clinical rational, patient voice, and frankly are offensive. My only hope for my son's future is through a lung transplant and these changes will increase mortality of strong and viable candidates. These changes were proposed without the support of leading lung research leaders and this needs to come to a halt immediately. We are better than this and we need to put patients first.

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,
Kristen Bushaw

Meg Dvorak
State of Residence: California

Relationship to Lung Transplant: Transplant Professional

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 am a psychotherapist for lung transplant patients at Stanford Health Care. I also facilitate support programs for lung transplant patients through CFRI and Stanford. This legislation matters a great deal to me and my patients as it could jeopardize the health of many of my patients awaiting new lungs.

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,
Meg Dvorak

Ronald Bailey
State of Residence: Oregon

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: (1) remove five points from the categories describing a recipient's medical condition and reallocating them to the efficiency category; and: (2) returning the CAS point allocation and ratios to the pre November 20, 2025 vote levels.

This matters to me because I am a lung transplant recipient. I know from first-hand experience how difficult it is to be added to the transplant waiting list, and then to spend months waiting for a call that suitable/compatible lungs are available for me. During that time, I needed to focus on remaining healthy and strong enough to survive transplantation when my turn came. I had to believe that the allocation process would be fair and based on my medical conditions and the medical judgements of my transplant team, especially since I am blood type O. I had to believe that my geographic location would not unduly disadvantage me to be offered donor lungs, or that less needy patients in more populated areas would be prioritized simply because of geography. I lived long enough to receive a lung transplant, although the risk of dying while waiting was always present. The allocation system should ALWAYS minimize waiting list mortality by ensuring the neediest patients receive highest priority, regardless of geography.

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:

(1) no prospective public comment period occurred before this major policy change.
(2) no clinical evidence was supplied justifying the use of the emergency pathway at the time of the vote.
(3) No clinical rationale was given for ignoring the recommendation of the Lung Committee, which unanimously opposed this change to the CAS.
(4) no solutions were proposed to address the concern that initial modeling suggested that these changes would increase the waitlist mortality for high-risk individuals.
(5) Consultation with patients and specialized lung transplant experts should occur 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 the OPTN Board of Directors will reverse the November 20, 2025 vote and restore the CAS to its previous point and ratio allocation.

Sincerely,
Ronald Bailey

Val DiEuliis
State of Residence: Minnesota

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 was dying 10 years ago from emphysema. A double lung transplant saved me from certain death. My condition was deteriorating in an accelerating fashion and obtaining the new lungs in a timely manner was critical to my survival. Please reconsider your decision on the lung allocation process. I want to see people who have the greatest need receive new lungs. Need trumps convenience if we as a society want to save as many people as possible.

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,
Val DiEuliis

Nalani Sutton
State of Residence: Vermont

Relationship to Lung Transplant: Caregiver/Community Member

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 a child I care about may someday need a lung transplant due to his genetic condition, on a personal note, and because patient needs should be at the heart of policies. Changes should be evidence- based and thoughtful, and meant to better patient care, rather than to increase efficiency despite the costs to lives.

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,
Nalani Sutton

Bethelhem Markos
State of Residence: Maryland

Relationship to Lung Transplant: working in the transplant research space

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 There should be equitable access to care for everyone needing a lung transplant.

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,
Bethelhem Markos

Elizabeth Rivera
State of Residence: Illinois

Relationship to Lung Transplant: Caregiver/Community Member

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 My husband is already going down in the list of future lungs transplant, he has HPS and blood O positive and is hard to find donors matching with him.

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,
Elizabeth Rivera

Glenda Suarez Moeller
State of Residence: Washington

Relationship to Lung Transplant: Caregiver/Community Member

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 my daughter had a double lung transplant, and she will be in need of a second lung transplant in the near future. She is petite and a more difficult match. The new CAS would would prioritize effiency over her well-being.

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,
Glenda Suarez Moeller

Daniella
State of Residence: Oregon

Relationship to Lung Transplant: Transplant Professional

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 This matters to me because I'm a cystic fibrosis and transplant Dietitian who supports lung transplant patients. The OPTN should NOT make changes without proper modeling and analysis. Changes to CAS should be data driven. Adding a preferential CAS points based on geographical location, thereby increasing waitlist deaths, making matching for body size and Type O blood, is wrong. Do the analysis, then follow standard OPTN rules and procedures to change and improve the CAS. Please review the letter provided by West Coast Lung Transplant Centers and REVERSE the recent CAS change made so that other Lung Transplant patients have the same opportunity

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,
Daniella

Kelly Wiberg
State of Residence: Colorado

Relationship to Lung Transplant: Caregiver/Community Member

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 am the parent of an adult with Cystic Fibrosis. She has been evaluated and is a candidate for a future lung transplant. She is of small stature and would require a specific match to have this life saving transplant when she is ready. This change in allocation puts small stature, children and other specific match categories at risk by not considering the match factors over location. Please reverse this decision before it costs the lives of those waiting on critical transplants!

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,
Kelly Wiberg

Christine Hernandez
State of Residence: California

Relationship to Lung Transplant: Caregiver/Community Member

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 we all deserve to thrive.

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,
Christine Hernandez

Brian Wiberg
State of Residence: Colorado

Relationship to Lung Transplant: Caregiver/Community Member

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 a daughter with Cystic Fibrosis who has been a candidate for a lung transplant. She has improved and not needed it at the time however could be a candidate in the future. She is small and would need a specific donor to provide a match. This new decision puts her and others with more specific match requirements at risk of not finding a correct match in time. Please reverse this decision and listen to the Lung Transplant Foundation and those that have opposed this decision!

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,
Brian Wiberg

Kathy Austad
State of Residence: Minnesota

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 had a single lung transplant in 2015 when my lung disease became worse. I had been on the wait list for three years and was moved up the list when breathing required more assistance.

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,
Kathy Austad

We respectfully urge the HRSA/OPTN Board to reverse its November 20, 2025 decision to remove five points from the biological disadvantage category and reallocate them to the efficiency category, restoring the Composite Allocation Score (CAS) to its previous point allocation.

This issue is deeply important because Les is a lung transplant recipient of 13 years and would have been impacted by such a change.

We found out about and totally support the concerns raised in the Lung Transplant Foundation's April 13, 2026 letter, endorsed by seventeen lung disease patient advocacy organizations. Those concerns include:

- the total lack of a prospective public comment period before this significant policy change and the absence of clinical evidence justifying the emergency pathway.
- your Board's decision to disregard the unanimous recommendation of the Lung Committee, despite concerns that the change could increase waitlist mortality for high-risk patients.
- your shift from extensive pre-implementation modeling to limited modeling with the expectation of addressing problems only AFTER they occur.
- the need to ensure that patients and lung transplant experts have a meaningful voice throughout the policy development process.

Thank you for considering these comments. We urge HRSA and the OPTN Board to review the available data, listen to the unified concerns of the lung transplant community, and restore the CAS to its previous point allocation. Yes -- reverse your decision.

Urgently,

Les and Chris Viegas
Florida

Transplant Families represents pediatric transplant patients and their families. We are writing to oppose the November 20, 2025 changes to the Lung Composite Allocation Score and to ask that the prior point allocation be restored.

We want to specifically thank Dr. Rachel Engen for her public comment as a pediatrician. She noted that pediatric candidates have long suffered disproportionate waitlist mortality, that CAS helped close that gap, and that reversing course risks more pediatric deaths on the waitlist. We echo her assessment fully. We would also note that this change disadvantages pediatric candidates twice over: it reduces the points tied to medical need while increasing weight on placement efficiency, which favors candidates who are easier and faster to match, not the harder-to-match children this system exists to protect.

This concern is not ours alone. The Lung Transplant Foundation, joined by seventeen patient advocacy organizations, has noted that the OPTN Lung Committee unanimously opposed this change and that initial modeling suggested it would raise waitlist mortality for high-risk candidates, pediatric patients among them.

This is not only a policy concern. In 2000, Congress amended the National Organ Transplant Act to require the OPTN to consider special issues concerning pediatric patients in allocation policy, and the law still requires a Board seat representing pediatric interests. A change that reduces pediatric weighting, skipped standard modeling and public comment, and was opposed unanimously by the Lung Committee is difficult to reconcile with that mandate.

We ask the Board to reverse the November 20, 2025 decision, restore the prior CAS weighting, and return to the standard modeling and public comment process before any future changes affecting pediatric patients are made.

Thank you for the opportunity to comment.

Respectfully submitted,

Melissa McQueen, MBA
Executive Director, Transplant Families
A program of the Children's Organ Transplant Association

To the OPTN Board of Directors and the Health Resources and Services Administration:

The Children's Organ Transplant Association represents pediatric transplant patients and their families. We are writing to oppose the November 20, 2025 changes to the Lung Composite Allocation Score and to ask that the prior point allocation be restored.

We want to specifically thank Dr. Rachel Engen for her public comment as a pediatrician. She noted that pediatric candidates have long suffered disproportionate waitlist mortality, that CAS helped close that gap, and that reversing course risks more pediatric deaths on the waitlist. We echo her assessment fully. We would also note that this change disadvantages pediatric candidates twice over: it reduces the points tied to medical need while increasing weight on placement efficiency, which favors candidates who are easier and faster to match, not the harder-to-match children this system exists to protect.

This concern is not ours alone. The Lung Transplant Foundation, joined by seventeen patient advocacy organizations, has noted that the OPTN Lung Committee unanimously opposed this change and that initial modeling suggested it would raise waitlist mortality for high-risk candidates, pediatric patients among them.

This is not only a policy concern. In 2000, Congress amended the National Organ Transplant Act to require the OPTN to consider special issues concerning pediatric patients in allocation policy, and the law still requires a Board seat representing pediatric interests. A change that reduces pediatric weighting, skipped standard modeling and public comment, and was opposed unanimously by the Lung Committee is difficult to reconcile with that mandate.

We ask the Board to reverse the November 20, 2025 decision, restore the prior CAS weighting, and return to the standard modeling and public comment process before any future changes affecting pediatric patients are made.

Thank you for the opportunity to comment.

Respectfully,

Rick Lofgren, President & CEO
Children's Organ Transplant Association
2501 W. Cota Dr. Bloomington, IN 47403

Dear HRSA and OPTN Leadership,

On behalf of the Cystic Fibrosis Research Institute and the cystic fibrosis community members we serve, I write to express our significant concern regarding recent policy actions related to the Composite Allocation Score (CAS) and associated allocation processes. We strongly encourage you to restore the CAS to its previous point and ratio allocation.

As a patient advocacy organization serving those with cystic fibrosis, for whom double lung transplants are often the only life-extending option, we are concerned by the November 2025 vote by the OPTN Board of Directors to change the Composite Allocation Score affecting lung transplant candidates, despite unanimous opposition from the Lung Committee. This policy change was advanced without clear public communication, patient engagement, or implementation guidance, creating uncertainty for patients and transplant centers. We have significant concerns regarding the process, transparency, and timing of these CAS-related changes.

Use of the “Emergency Actions” pathway.
While there did not appear to be a time-sensitive and critical need for immediate change, use of the Emergency Actions pathway led to the bypassing of public comment prior to policy implementation. No clinical evidence was supplied justifying the use of the emergency pathway at the time of the vote to change the CAS. Given the significant impact allocation policy changes have on patients awaiting transplant, we believe a transparent and accessible opportunity for community feedback prior to the adoption of any change is essential.

Alignment with Expert Committee Recommendations
We are concerned that the unanimous recommendations of the OPTN Lung Committee — comprised of clinical experts and community representatives selected specifically for their subject matter expertise — appear to have been overridden. No clinical rationale was given for ignoring the recommendation of the Lung Committee. From the patient perspective, it is difficult to reconcile this outcome when expert guidance and available data suggest that the current priorities, including focus on Allocation Out of Sequence (AOOS), may not reflect the most pressing challenges within lung allocation.

Consideration of the Policy
Recent data from the Scientific Registry of Transplant Recipients website shows Allocation Out of Sequence (AOOS) does not appear to be aligned with the current realities of lung allocation. There is concrete statistical modeling showing that reweighing the allocation of points to the Travel Efficiency category and pulling them away from biological factors such as blood type and short stature, will negatively impact waitlist mortality for lung transplant candidates, particularly among those who are most difficult to match.

Thank you for the opportunity to comment. The Cystic Fibrosis Research Institute and the community members we serve sincerely hope that 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,
Siri Vaeth, MSW
Executive Director
Cystic Fibrosis Research Institute

As I stated earlier, it seems cruel to change the program that was in place for something that will be detrimental to a large majority of those waiting for lungs and further organs down the road. I truly hope this committee will not just look at the numbers for efficiency sake but to your heart and mind. Consider what this could do if you find yourself or a loved one in a place of needing transplant.

Carrie Chown
State of Residence: California

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 received a life saving bilateral lung transplant 22 years ago, just weeks before I would have died without this gift of life. I have been living life to the fullest in honor of my donor and giving back to the lung transplant community as an ambassador and mentor. In this time, I have become friends with many incredible lung recipients, one of which is currently awaiting her second bilateral lung transplant. She has been waiting over a year now, and despite worsening health, has not seen any movement on the list. I am angered and saddened that as she fights for her life, the HRSA/OPTN Board has made it less likely that she will receive her gift in time. This is not about politics or ego, it is about saving human lives.

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,
Carrie Chown

patients like me, of petite and short stature, are a more difficult match. I am a double lung transplant recipient. When points are taken away from critical biological factors, the most vulnerable patients are at a higher risk of death while waiting on the list. I have seen many people die waiting for their transplants. When I received my lung transplant in 2019, I had been waiting two-and-a-half years under the LAS (Lung Allocation Score) system. Data shows that the improvements made in 2023, to what became known as the CAS, sped up lung transplantation for patients like me, creating more equitable distribution of available lungs and saving more lives. However, the most recent changes to the CAS, by which the Lung Board and the lung transplant community were not consulted, and which prioritized efficiency points over saving the most vulnerable lives, are deeply worrisome. I question the current ethics of HRSA and the OPTN.

Enrique Mendez
State of Residence: Ohio

Relationship to Lung Transplant: Caregiver/Community Member

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 as a caregiver and parent of a child that would need a lung transplant in the future I am deeply concerned about the transparency and the "emergency" processed invoked to implement this policy. The new changes were not properly consulted with experts in the field that have been working this process for many years; why have experts if they are not consulted. Furthermore, the way the policy transpired lacked of the proper training and education of the people trying to make sense of it and in charge of implementing it. Lastly, this new policy and the "redistribution of points" will change the outcome for patients that would have qualified to a right to live and now will be rejected in the name of a policy that invokes "efficiency". These people have the right to live and they are not just a statistical number, they have a voice that should be listened and they deserve a process/policy that provides them that opportunity.

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,
Enrique Mendez

L Fisch
State of Residence: Washington

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 am a lung transplant candidate currently waiting. In addition, changes in rules, regulations, and processes, take much work and contemplation to be done correctly and meet the needs of the affected community. It seems this decision warrants a serious review.

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,
L Fisch

Jodi Kiefer
State of Residence: Colorado

Relationship to Lung Transplant: Caregiver/Community Member

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 my son who is currently 15 will need a lung transplant when he gets older. This change in point allocation will lower him down on the transplant list, significantly risky his ability to get a transplant. Please do not limit the points in these way as my son has a lot to give back to this world and already having a lung transplant need in his future is already enough of a setback. Please reconsider as everyone is valuable to this world and we shouldn't automatically setback those who already have their own setbacks to overcome.

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,
Jodi Kiefer

Arlen J Fritz
State of Residence: Washington

Relationship to Lung Transplant: Caregiver/Community Member

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 if this is left standing it will detrimentally effect a family member of mine, and many other transplant patients.

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,
Arlen J Fritz

Daniel Walter
State of Residence: Kansas

Relationship to Lung Transplant: Caregiver/Community Member

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 my 6 year-old son, William, has Hermansky-Pudlak Syndrome Type 1, and will need a double-lung transplant someday. This genetic disorder includes a bleeding disorder that might require life-saving blood transfusions at some point in his life. Because of this, his antibodies might prevent him from getting a lung match someday with this change to the CAS.

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,
Daniel Walter

Teresa Wang
State of Residence: Washington

Relationship to Lung Transplant: Caregiver/Community Member

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 This will greatly impact the most vulnerable in our community. Please do not do this.

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,
Teresa Wang

Michael Levengood
State of Residence: Washington

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 am currently on the wait list for a double lung transplant. I do not agree with the OPTN Board changing the Placement Efficiency Category from 10 to 15 percent. Do Not change the CAS Point Allocation System.

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,
Michael Levengood

Emily Carrion
State of Residence: Washington

Relationship to Lung Transplant: Caregiver/Community Member

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 Because one of my dear friends is a lung transplant recipient and will need another.

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,
Emily Carrion

Nari Baker
State of Residence: Washington

Relationship to Lung Transplant: Caregiver/Community Member

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 Nari Baker
State of Residence: Washington

Relationship to Lung Transplant: Caregiver/Community Member

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 one of my closest friends is a recipient of a double lung transplant. Her life is so important to me. She has been saved by this procedure, and it is affected my entire family for the positive as well as our shared community, countless other people that she has touched over the years of her life and career.

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,
Nari Baker

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,
Nari Baker

I am writing as a lung transplant recipient urging HRSA and the OPTN Board of Directors to reverse the November 2025 decision which both allocated additional points to placement efficiency and increased the weight of the curve in distance based scoring.

I am in significant disagreement with the policy change, the dearth of evidence supporting a correlational link between the implementation of the CAS in its previous form and an increase in AOOS in lung transplant, the validity of the use of the emergency pathway, and how the impact on the lives of lung transplant candidates and recipients is being assessed.

This policy change takes us backwards, ignoring both the results of the Analytic Hierarchy Process used to determine the individual components of the CAS, and the way that the specific components of the CAS and their percentages of points was a direct and thoughtful attempt to make lung transplant allocation more inline with the Final Rule. The values expressed by the lung transplant community have been ignored, and geographic inequality made significantly worse under this policy change (reference: https://pubmed.ncbi.nlm.nih.gov/42176849/ ). If organ transplant truly is a national resource, it should be distributed equally throughout the nation. This policy change works against that goal, significantly disadvantaging transplant hospitals, candidates, and recipients on the West coast. Although it is true that the same number of lung transplants are expected to continue moving forward, they will be differently distributed than they would have been had this policy change not been implemented. For those of us who are living the lives in question, this is not a hypothetical medical ethics exercise. It is whether or not we live or die. And this redistribution of points, because it bypassed the prospective public comment period, not only did not include our voices, but goes against our wishes as determined in the Analytic Hierarchy Process which was used to developed the CAS. In short, this is our medical care, and we did not and do not consent to this.

Additionally, there is no evidence that the current rate of AOOS in lung transplant qualified for a policy change to utilize the Emergency Pathway, and there is significant evidence presented that it does not. Immediately prior to the November vote, Dr. Hartwig presented the OPTN Board with a graph which clearly demonstrated that AOOS in lungs had been around 4% prior to the change to the CAS, had risen steadily in line with other organs for a temporary amount of time, and had essentially returned to the pre CAS level in 2025 without any policy level intervention. Although the years in question, when AOOS was at its highest, included several other significant changes including the invention of new perfusion technologies, and implementation of new OPO metrics, these were not taken into consideration as potential drivers of increased AOOS. Co-occurring is not the same thing as correlational, and HRSA has failed to make a scientifically sound case that the implementation of the CAS with its original point ratios was a significant driver of AOOS. Additional evidence that this policy change should not have qualified under the Emergency Pathway include: the mention during the OPTN Board meeting of an email from HRSA in which HRSA would not allow the Board to continue work on Continuous Distribution in other organ communities unless they voted to implement this policy change in lungs, that that there was a six month delay between the vote and implementation of the policy change, and that HRSA wrote on their own public comment website that they did not expect this change to eliminate AOOS, nor did they list an impact on AOOS under their category of things they did expect it to change.

Many submitted public comments have outlined the potential negative impacts on biologically disadvantaged individuals, and the likely increase in geographic disparity on waitlist mortality. I will not repeat what has already been so thoughtfully contributed to the public comment. But I do want to add that tracking changes in waitlist mortality is not a comprehensive measure of how policy changes create harm in the lung transplant community. Since the public comment window opened, well over four hundred lung transplant candidates, recipients, caregivers, and community members have written in to express their strong opposition to this change. Ignoring our unified voice against this policy causes harm. The increase in fear that we ourselves and our loved ones now live with causes harm. The loss of trust in the independence of the OPTN Board of Directors causes harm. And the fear that decisions will continue to be made moving forward without an appropriately rigorous scientific process causes harm.

Although I do not support this change to the CAS for all of the reasons mentioned above, I do support ongoing evaluation of concerns within lung transplant, rigorous scientific inquiry, and attempts to improve and modernize any aspect of the process that could save more lives and improve transplant outcomes.

Before any new change to the CAS is implemented, I expect to see:
HRSA/OPTN to publicly release what they believe the acceptable rate of AOOS in lung is.
A workgroup assembled that includes the OPO’s working in coalition with other lung transplant professionals to identify all contributing factors to AOOS and working jointly to propose a novel solution free from HRSA’s political influence.
A prospective public comment period once a new proposal is created.

Thank you for the opportunity to comment on this temporary change to the CAS. It is my sincerest hope that the unanimous opposition from the lung transplant community will factor significantly into the final vote when it is time to determined if this policy change will be made permanent.

Fidel Oyerbides
State of Residence: Oklahoma

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 feel that the categories describing a recipient's medical condition should be the top priority. That is why we are on the list in the first place. And as our condition worsens, our chances of receiving the organs should increase. I assume none of you on this board are on a donor list or have already had a transplant of any kind. If you are or have, you should realize how important it is to have considered input from transplant doctors or the OPTN thoracic transplant committee. They are the experts. Your decision puts us at a higher risk of death while we are waiting for a transplant.

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,
Fidel Oyerbides

M. S.
State of Residence: California

Relationship to Lung Transplant: Lung Transplant Candidate/Recipient, Other Solid Organ 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 am a heart, double lung transplant recipient. Soon after I was placed on the waiting list for a transplant, my health deteriorated very rapidly. My heart and lungs were in such a fragile state, that I had to be admitted to the hospital where I would remain until I received my transplant. My size greatly reduced the chance of finding a suitable donor and I did not have the luxury of time. Fortunately and very gratefully, I received my transplant just in the nick of time. Please do not reduce points for biologically disadvantaged patients or a recipient’s medical condition in favor of placement efficiency.

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,
M. S.

Maria Ochoa Vazquez
State of Residence: Washington

Relationship to Lung Transplant: Caregiver/Community Member

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 my close friend is a double lung transplant recepient and may need to be listed again in the future.

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,
Maria Ochoa Vazquez

Henry Verga
State of Residence: California

Relationship to Lung Transplant: Lung Transplant 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 this change is less then two years since the last modification in the CAS scoring for lung transplantion, with minimal evidence to support that reducing "logistical complexity" will more effectively allocate donor lung organs for transplant candidates. My double lung transplant was in October 2024 and I am blessed to have received this lifesaving organ transplant!

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,
Henry Verga

Angeline Thomas
State of Residence: Washington

Relationship to Lung Transplant: Caregiver/Community Member

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 One of my dearest friends is a long transplant recipient and she may need another transplant in the future. Please don't make an already impossibly hard situation even harder for her and the many people who are similarly situated.

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,
Angeline Thomas

Katrina Couch
State of Residence: Washington

Relationship to Lung Transplant: Living Organ Donor

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 a family member who is an organ donor recipient and is in need of another double lung transplant. ANY limitations to this would limit her ability to have a full and wonderful life. She is an absolutely wonderful human and deserves every opportunity to thrive in this life. She gives so much to our world and we hope to see her live a long productive life.

I have become an organ donor because of her situation and also have supported literally dozens of other people to register as well. We host charity events to encourage registration with Donate Life, and have had an amazing response.

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,
Katrina Couch