Update on Lung Continuous Distribution Policy

Kyle Johnson
State of Residence: North Carolina

Relationship to Lung Transplant: Lung Transplant Candidate/Recipient, 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 am a lung transplant candidate and I have many loved ones who are as well. Because of this change I am scared that they will not receive organs when they need them. I am angry that the change is needless and will not contribute to success in a measurable way. And I am concerned that making these kinds of changes with such lack of insight and professional review will become a norm. Please reconsider and listen to the doctors and organ transplant professionals who oppose this change.

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,
Kyle Johnson

Kim Madey
State of Residence: Oregon

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 matters to me because ... Some thoughts: ... our dear friend Willem Wery had a successful double lung transplant due to Cystic Fibrosis. I have witnessed his amazing recovery. He's back to being active and enjoying life. I'm so grateful that we have more time to make memories together. Please REVERSE the CAS change made so that other Lung Transplant patients will 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,
Kim Madey

Nicholas Goman
State of Residence: Oregon

Relationship to Lung Transplant: 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 good friend of mine has a chronic rejection diagnosis. It’s my understanding that the alterations in the CAS points and ratios will increase waitlist mortality.

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,
Nicholas Goman

James H Woodruff
State of Residence: Washington

Relationship to Lung Transplant: Friend of 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 a good friend of mine had a successful double lung transplant due to Cystic Fibrosis. Before the transplant he was struggling with life's most basic activities. Now he's even more active than I am, and enjoying life. I'm so grateful we can share this extra time together. Please REVERSE the CAS change so other lung transplant candidates will have the same opportunity as my friend.

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,
Jim Woodruff

Current lung CAS scores are not often reflective of patient level of illness particularly for our ILD patients who scores are generally lower since CAS implementation with this diagnostic category making up one of the largest indications for lung transplant in the current era. Proposed adjustments to the attributes of the score include:

-changing the waitlist survival point ratio to post-transplant outcomes ratio back to 2:1 or even 1.5:1 rather than 1:1
-placing weight not only on resting oxygen need but on ambulatory oxygen requirements as well, and/or allowing for a score adjustment based on center altitude
-adding further distinction between high flow nasal cannula and heated high flow nasal cannulas which can be considered a level of mechanical support, with greater points assigned to heated-high flow

I strongly oppose the OPTN’s May 7, 2026 emergency amendment to the lung Composite Allocation Score (CAS), which increased the emphasis on geographic placement efficiency and expanded distance-based scoring.
This amendment was implemented without sufficient deliberation, public comment, or stakeholder consensus, despite explicit opposition from the OPTN Lung Transplantation Committee and significant concerns raised across the transplant community.
Importantly, the amendment undermines the foundational goals of the 2023 continuous distribution framework, which was specifically designed to reduce geographic disparities and prioritize medical urgency, expected benefit, and equitable access to transplantation.
Recent evidence further highlights these concerns. Data published by Valapour et al. (CHEST, 2026) demonstrate that geographic inequities already existed prior to this amendment, with West Coast and certain rural centers having substantially fewer effective donors for hard-to-match candidates. This results in patients in some regions needing to be significantly sicker than those in others to access transplantation—an outcome that directly contradicts OPTN policy stating that organs should be treated as a national resource and that geographic prioritization should be minimized or eliminated.
Additionally, the current scoring system already presents significant barriers for patients with COPD and those of advanced age—populations that make up a large proportion of candidates at many rural centers. By further emphasizing geographic efficiency, this amendment risks compounding existing disadvantages for these patients, thereby exacerbating inequities in access to transplantation.
Equally troubling is the lack of supporting data presented by the OPTN Board to justify these changes, particularly given that such decisions have life-and-death consequences for patients awaiting transplant.
For these reasons, I urge OPTN to rescind this amendment and to ensure that any future changes to placement-efficiency weighting undergo rigorous modeling, transparent impact analysis, and a full public comment process prior to implementation.

Heather McCoy
State of Residence: South Carolina

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 an organ recipient and know the hurdles it takes to endure this process. I kindly and urgently ask you to reconsider how this decision could affect those of which this policy change taking place would affect an outcome. It should not put only one group at a better chance and negatively affect another. The waiting time is crucial and I waited a month for my lungs. However, I know others who already have longer wait times for different factors. With this decision it could cause the ones that are not as favorable and high priority with this to not get transplanted on time. I have several friends in the Cystic Fibrosis community alone that we do not have any time to waste, unfortunately, we can decline so rapidly that having a better chance at getting organs in our region with the appropriate allocation score can be a matter of success or mortality. The allocation scores as the policy change states being affected and the regions it would favor and not so much, could negatively affect those like myself. Which could turn disastrous and also make statistics for centers who have had success rates so far decline because time is of the essence. The list is long enough and data sometimes does not represent how sick someone truly is. I was one of those during my rejection phase waiting for my second double lung my data did not give a true representation of how close to dying I was. I clung to life knowing my hospital had a shorter wait time in 2012 and 2020 and was thankful I did not have a lot of antibodies to match and was 0+. I also am a petite female so my frame had to be matched with the right size of course and can make it harder to get the right lungs to match the chest cavity. I am thankful my organs came on time or I would not be writing to you today. I am concerned what it could mean for the future and so many in similar positions. As an organ recipient at the end of the day, no one knows what it truly is like to endure this entire process until you find yourselves in these difficult and challenging shoes. I have walked this journey with great courage and hope and want the same to happen for others to experience the beautiful and humbling gift that receiving the gift of life is. I have spoken with other transplant physicians who have told me personally how this could negatively affect regions like my own which a huge population of potential recipients go through. I ask you to please consider if this was you or your loved one what your decision would be. I am deeply concerned how this would affect things moving forward. Although, I have had two lung transplants and a kidney all at my same center at Duke hospital, I wonder how it could affect me if I were to have to get another transplant. The transplant process is hard enough and every day is trying to beat the clock before a life expires so any additional hurdles that can make wait times longer and it harder for lungs to become available in our region will lead to mortality rates going up. The allocation score tied to someone can be a factor of life or death with consideration of priority with receiving lungs. I want to thank you for time and consideration. I am willing to talk with you about my experience further if necessary. I am not in favor of this new policy change and I respectfully ask you all to listen to the transplant community on this matter.

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,
Heather McCoy

Scott Leibowitz
State of Residence: Oregon

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 friend whose daughter is awaiting a lung transplant, and because I believe that decisions on how organs are allocated should be fair, transparent, primarily aimed at achieving the greatest reductions in mortality, and based on the best available science. I am especially concerned that the current Nov. 20, 2025 allocation system decreases the impact of the height factor, which was shown to reduce wait list mortality, and that this decision was made without any input from the affected lung transplant community.

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,
Scott Leibowitz

Tim Berger
State of Residence: New Jersey

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 29 year old daughter received a life-saving double-lung transplant November 20, 2019 and her donor lungs were flown in from Puerto Rico. Under the proposed change, those lungs likely would not have gone to her and we would have likely lost our beautiful baby girl.

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,
Tim Berger

I am one of the many, that holds the hope within the heart to breathe easy. I’m part of a community of us that a percentage of us develop pulmonary Fibrosis. In our community we have lost friends to PF too soon, and young within their late 20’s. To hear about familiar friends passing of PF is heartbreaking and devastating and it is a gap in our community and lives. It can feel like this, not only in being within our HPS community, but in living within the Rare Disease community of so many others who have PF, along with other conditions that affect the lung and organ systems.

A lot of us come from experiences where conditions not only affect one organ, but many, and when I was born, my height was predicted to be like a basketball players height. Because of other medications that needed to be taken to slow down the progressions of other aspects of HPS, growing up, and being on lots of steroids with having a specific gene of Crones Disease to HPS, these all brought about me being presently more petite. Our heights can be seen as a physical aspect, but what’s behind our heights is NOT exactly within our control! To have solutions, to have lung transplants is a miraculous step in our community! Though we’ve had many that have passed due to lung conditions such as PF, we have also had so many very lucky success stories! Lung transplants are a huge option for us all to be able to live the best quality of life, and if it is stunted and taken away, hope can be lost for so many! These changes that happened affect all of us deeply, and there is also a need for transparency within this system to allow things to work fairly, and for no stone to be unturned! Access to lung transplantation is vital and vital for all walks of life!

My name is Ashley Appell and at around two years old, I was diagnosed with Hermansky Pudlak Syndrome through lots of bruising, and bled to shock in my crib through a Traumatic Brain Injury. Since then, my Mom wanted no one else to be alone in this journey and she founded our Hermansky Pudlak Syndrome Network. We are Rare, however we are mighty! We have come a long way with awareness and research, but we still feel that we have so much more that we need to do, including helping us to breathe easy! This multi-system disease is characterized by low vision, a platelet defect, Crohn’s-like colitis, and eventually pulmonary fibrosis.

I think the letter referred to in the presentation that allegedly is forcing the BOD's hand should be made available to the public. If HRSA has actually threatened to hold up work in other areas if this new rule wasn't implemented emergently, the public should be aware of it.

Ken Zivic
State of Residence: Wisconsin

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 Ken Zivic
State of Residence: Wisconsin

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 bilateral lung transplant in 2024 with lungs that were from a great distance from my hospital. Given the changes with the CAS, I would probably not have received these lungs and would have either waited a long time or died in the process. I am sure that the reason behind this change has not really considered the opinions of the medical teams who do not endorse this change. If the primary reason is cost, which it appears to be, then the decision to change the CAS is not in line with medical and moral judgement. Please reconsider and reverse these changes.

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,
Ken Zivic

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,
Ken Zivic

Bruce Chaundy
State of Residence: Pennsylvania

Relationship to Lung Transplant: Lung Transplant Candidate/Recipient

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

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

This matters to me because I have been on the list for 6 months and by lungs are decreasing every day, transplant is needed to live.

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,
Bruce Chaundy

Bethany 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 six-year-old son has Hermansky-Pudlak Syndrome, a genetic disorder which will cause him to need a double lung transplant due to pulmonary fibrosis. This decision will directly impact my child's ability to receive new lungs someday.

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,
Bethany Walter

Xan Nowakowski
State of Residence: Florida

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 I have cystic fibrosis myself; although I am not currently a candidate for transplant due to more effective clinical management and very aggressive infection control protocols, I may one day need a double lung and/or kidney transplant if my disease progresses badly in those organ systems. I also have a parent with a liver transplant, and am registered as a living organ donor for any of my own tissues that might be viable for transplant purposes such as skin and eyes. Many of my friends in the CF community also have lung and other organ transplants. I have seen firsthand the impact that transplantation makes in people's lives and know how essential preserving access to these treatment options remains.

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,
Xan Nowakowski

At its core, this proposal seeks to reduce allocation out of OPTN sequence (AOOS). While the intent is understandable, the selected measure is indirect and may not reliably achieve that goal. Alternative approaches, such as adjustments to medical urgency may more effectively address AOOS.
As pediatric providers, we are particularly sensitive to any changes that could inadvertently reduce organ availability for children. The National Organ Transplant Act recognizes the unique needs of pediatric patients and underscores the importance of protecting pediatric allocation.
We acknowledge the analysis suggesting a minimal impact on pediatric patients and appreciate the broader effort to improve allocation efficiency. In that spirit, we are generally supportive of this proposal.
However, greater clarity is needed around how success will be measured. What specific outcomes will define effectiveness, and over what timeframe? Equally important, what mechanisms are in place to reassess or adjust course if the intended goals are not achieved? Transparency in both methodology and evaluation will be critical. If unintended consequences emerge, particularly if the underlying issue remains unresolved, we believe it is essential to consider reevaluation, including the possibility of reversing course.

Above all, we must ensure that efforts to improve efficiency do not come at the cost of pediatric access. Incremental changes over time, even well-intentioned ones, should not result in a gradual erosion of protections for children. Safeguarding equitable access for pediatric patients must remain a central priority in all allocation decisions.

I am writing to express my strong desire for HRS/OPTN Board to reverse the decision that was voted on November 20, 2025. As a short statured individual (5'1"), the new CAS system would exasperate the already difficult prospect of receiving a lung before death. Prior to implementation of this policy I received a lung offer in less than 2 weeks which unfortunately was a 'dry run'. Since then several months have passed without an offer. Transplant candidates with particular challenges (short statured) need to have the the widest net cast in order to capture as many donor possibilities. Cost savings and/or the reduction of AOOS should not be addressed at the cost of reducing the chance for a transplant for disadvantaged candidates, specifically the short statured. Regardless of the Randy Newman song, short people do have a reason to live. The change from 244.1 to 227.1 is not only statistically significant, it very well may be the difference of life or death.
Thank you for your kind consideration,
Robert Cluckey

George
State of Residence: Virginia

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 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 people are dieing and lungs are being wasted.

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,
George Chatneuff

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,
George

Mike Woodward
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 I think you should listen to the medical experts

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,
Mike Woodward

Karen Kinsey
State of Residence: Virginia

Relationship to Lung Transplant: Lung Transplant Candidate/Recipient

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

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

This matters to me because I have both a rare lung disease and extremely high CPRA levels. In addition, I had prior pleurodesis on both lungs. These factors resulted in several centers rejecting me as a candidate. I fear what my wait time would be if I was currently listed under the new 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,
Karen Kinsey

sara c mcmahon
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 change endangers people I know

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,
sara c mcmahon

Michael Busch
State of Residence: Iowa
Relationship to Lung Transplant: Program Quality Engineer/Epidemiologist

I am writing to express my strong opposition to the OPTN’s May 7, 2026 emergency amendment to the lung Composite Allocation Score (CAS), which increased the weight of geographic placement efficiency and strengthened distance-based scoring.
This amendment was implemented without adequate deliberation, meaningful public comment, or broad professional consensus. Notably, it proceeded despite opposition from the OPTN Lung Transplantation Committee and significant concern from across the transplant community. Such a process undermines transparency and erodes trust in the governance of organ allocation policy.
Substantively, this amendment reverses the core goals of the 2023 continuous distribution framework. That system was intentionally designed to reduce geographic disparities and instead prioritize medical urgency, expected benefit, and equity in access to transplantation. By elevating geographic efficiency, the amendment reintroduces and reinforces location-based inequities that continuous distribution sought to eliminate.
Recent evidence further highlights the risks of this shift. Valapour et al. (CHEST, 2026) demonstrate that geographic disparities in lung allocation already existed prior to this amendment. Specifically, West Coast and certain rural transplant centers have significantly lower effective donor availability for hard-to-match candidates. As a result, patients in these regions must often be sicker to access transplantation compared to those in more advantaged areas. Increasing the emphasis on distance-based scoring will predictably worsen these inequities.
This outcome stands in direct conflict with OPTN’s own guiding principles, which clearly state that organs should be treated as a national resource and that geographic priority in allocation should not govern access. Policies that amplify geographic advantage are inconsistent with this mandate.
Equally concerning is the lack of publicly presented data to justify this policy change. No transparent modeling, impact analysis, or evidence was shared to demonstrate that increasing placement efficiency weighting would improve outcomes without exacerbating disparities. Implementing such a consequential change without supporting data places patients at risk and raises serious concerns about policy stewardship.
For these reasons, I strongly urge OPTN to revoke the May 7, 2026 amendment. Any future changes to placement-efficiency weighting should undergo rigorous modeling, transparent impact analysis, and a full public comment process prior to implementation. These steps are essential to ensure that allocation policy remains equitable, data-driven, and aligned with national principles of fairness.

Sincerely,

Michael Busch

Jennifer Goldstein
State of Residence: North Carolina

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 there have been 2 family members of ours that have had Pulmonary Fibrosis, one of whom was transplanted and survived almost 20 years.

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,
Jenni Goldstein

Jacquelyn Pyle
State of Residence: North Carolina

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 brother was a lung transplant recipient. He lived 17 years after his transplant and in that time established the Lung Transplant Foundation. The system needs to be fair and impartial and medical necessity is a vital component.

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,
Jacquelyn Pyle

Rachel Sun
State of Residence: New York

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 lung transplant saved my uncle's life and the lives of so many special people. To make changes that will, as data suggests, likely increase waitlist mortality is unthinkable.

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,
Rachel Sun