Update on Lung Continuous Distribution Policy

Tim Gruhn State of Residence…

Tim Gruhn
State of Residence: Ohio

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 it reflects the kind of future I want to help shape—one where compassion, awareness, and action genuinely change someone’s life.

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 Gruhn

As a lung transplant program…

As a lung transplant program committed to equitable access, evidence-based allocation, and optimal
patient outcomes, we wish to express our concerns regarding the November 2025 decision to modify
the Lung Continuous Allocation Score (CAS) by reallocating points from biological disadvantage
categories to placement efficiency.

We recognize and support efforts to address allocation out of sequence (AOOS) and to improve the
overall performance of the allocation system. However, we are concerned that this policy change was
implemented without sufficient evidence and prospective evaluation that has historically characterized major lung allocation policy decisions.
Our primary concerns include:

Risk of Increased Waitlist Mortality
Initial modeling and stakeholder concerns suggested the possibility of increased waitlist mortality
among difficult-to-match and high-risk candidates.

Potential Harm to Biologically Disadvantaged Candidates

Candidates with blood type limitations, high sensitization, small stature, and pediatric candidates
already face significant barriers to transplantation.
Reducing the weight assigned to biological disadvantage while increasing the weight assigned to
placement efficiency may further disadvantage patients who often require broader geographic sharing
to identify suitable donors.
Limited Public Process and Transparency
The policy was implemented through an emergency pathway without a prospective public comment
period. The transplant community was not provided sufficient data demonstrating the magnitude of the
AOOS problem within lung allocation or evidence that the proposed solution would effectively address
it. In this case, limited modeling was presented despite concerns that the
changes could adversely affect access for certain candidate groups.

Disregard of Expert Committee Recommendations

Significant policy changes should carefully consider and transparently address the recommendations of
the specialty committee charged with oversight of lung allocation.

Any policy change that may alter access to transplantation for vulnerable populations should be
supported by robust prospective evidence demonstrating that benefits outweigh risks.

As a transplant program, our overarching concern is that allocation policy should continue to prioritize
medical urgency, transplant benefit, and equitable access while ensuring that biologically disadvantaged
candidates are not unintentionally harmed. We support a transparent, data-driven reassessment of this
policy and encourage renewed engagement with the Lung Committee, transplant programs, patients,
and advocacy organizations to ensure that future modifications are grounded in robust evidence and
broad stakeholder input.

If emerging data demonstrate adverse effects on access or outcomes, prompt reconsideration of the
policy should occur. We support an evidence based modifiation of the allocation system.

I agree with comments posted…

I agree with comments posted by the Lung Transplant Foundation and the pediatric constituency that this proposal is flawed and CAS should be reverted. The scientific evidence recently presented at the American Transplant Congress shows that this HRSA bureaucracy-driven proposal is flawed thinking.

Keep it the same

Keep it the same

Rosha Poudyal State of…

Rosha Poudyal
State of Residence: Massachusetts

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 young individual whose life depends on being able to receive 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,
Rosha Poudyal

RE: Public Comment on the…

RE: Public Comment on the Update on Lung Continuous Distribution Policy

LifeLink® of Georgia appreciates the opportunity to provide public comment on the Update on Lung Continuous Distribution Policy. As an organ procurement organization, LifeLink of Georgia supports efforts to strengthen allocation integrity, reduce unnecessary barriers to organ placement, and mitigate avoidable organ non-use in a manner that honors donor families and best serves patients awaiting a life-saving transplant.

LifeLink of Georgia recognizes that Allocation Out of Sequence (AOOS) is a concern that warrants thoughtful attention. The integrity of the allocation system depends on a shared commitment among OPOs, transplant programs, the OPTN, HRSA, and other stakeholders to support efficient, equitable, and policy-compliant organ allocation while preserving appropriate safeguards against organ non-use.

Our comment is focused on the policy development and governance process, particularly the apparent disconnect between the recommendation of the OPTN Lung Transplantation Committee and the final decision made by the OPTN Board of Directors. LifeLink of Georgia acknowledges the concern reflected in many public comments that stakeholders do not fully understand why the Board proceeded with a policy change that did not align with the recommendation of the organ-specific committee charged with bringing clinical and technical expertise to lung allocation policy.

LifeLink of Georgia respects the authority and responsibility of the OPTN Board to make final policy decisions, including decisions that require balancing clinical, operational, ethical, and system-level considerations. At the same time, when the Board reaches a decision that differs from the recommendation of an expert committee, it is important for the Board to clearly acknowledge that recommendation, explain the rationale for departing from it, and identify how the committee’s expertise will continue to inform implementation, monitoring, and future policy refinement.

The OPTN committee structure is a critical mechanism for incorporating specialized clinical knowledge, patient-centered considerations, operational experience, and real-world transplant system expertise into national policy. Organ-specific committees are uniquely positioned to evaluate how changes may affect medically complex candidates, biologically disadvantaged candidates, pediatric candidates, transplant program behavior, offer acceptance practices, and the broader balance of system equity and utility. Their recommendations should therefore be treated as a central part of the policy record and visibly accounted for in Board deliberations and decisions.
LifeLink of Georgia encourages the OPTN Board to take seriously the concerns raised by the Lung Transplantation Committee and by members of the broader transplant community. In particular, LifeLink of Georgia encourages greater transparency regarding the evidence considered, the rationale for the selected policy approach, the reasons for not adopting the Lung Committee’s recommendation, and the safeguards or monitoring that will be used to assess unintended consequences.

This is especially important when a policy change affects the relative weight of placement efficiency compared to other allocation factors. Efforts to improve efficiency and address AOOS should be carefully balanced against the need to preserve patient-centered allocation principles, including medical urgency, expected post-transplant benefit, pediatric priority, biological disadvantage, and equitable access to transplant.

LifeLink of Georgia remains committed to supporting allocation integrity, improving organ placement, and engaging constructively with HRSA, the OPTN, OPOs, transplant programs, patients, donor families, and other stakeholders to ensure that allocation policy is evidence-based, transparent, equitable, and worthy of public trust.
Thank you again for considering these comments and for the continued work to advance a safe, ethical, and trusted donation and transplantation system. We remain appreciative of the volunteers and OPTN staff who steward policy development and implementation, often under complex clinical and operational realities. We would welcome the opportunity to support further discussion or provide additional operational perspective as the OPTN finalizes this proposal.

Hope Weed, RN, BSN, CPTC
Executive Director
LifeLink of Georgia

July 3, 2026 RE: Public…

July 3, 2026

RE: Public Comment on the Update on Lung Continuous Distribution Policy

LifeLink® of Puerto Rico appreciates the opportunity to provide public comment on the Update on Lung Continuous Distribution Policy. As an organ procurement organization, LifeLink of Puerto Rico supports efforts to strengthen allocation integrity, reduce unnecessary barriers to organ placement, and mitigate avoidable organ non-use in a manner that honors donor families and best serves patients awaiting a life-saving transplant.
LifeLink of Puerto Rico recognizes that Allocation Out of Sequence (AOOS) is a concern that warrants thoughtful attention. The integrity of the allocation system depends on a shared commitment among OPOs, transplant programs, the OPTN, HRSA, and other stakeholders to support efficient, equitable, and policy-compliant organ allocation while preserving appropriate safeguards against organ non-use.
Our comment is focused on the policy development and governance process, particularly the apparent disconnect between the recommendation of the OPTN Lung Transplantation Committee and the final decision made by the OPTN Board of Directors. LifeLink of Puerto Rico acknowledges the concern reflected in many public comments that stakeholders do not fully understand why the Board proceeded with a policy change that did not align with the recommendation of the organ-specific committee charged with bringing clinical and technical expertise to lung allocation policy.
LifeLink of Puerto Rico respects the authority and responsibility of the OPTN Board to make final policy decisions, including decisions that require balancing clinical, operational, ethical, and system-level considerations. At the same time, when the Board reaches a decision that differs from the recommendation of an expert committee, it is important for the Board to clearly acknowledge that recommendation, explain the rationale for departing from it, and identify how the committee’s expertise will continue to inform implementation, monitoring, and future policy refinement.

The OPTN committee structure is a critical mechanism for incorporating specialized clinical knowledge, patient-centered considerations, operational experience, and real-world transplant system expertise into national policy. Organ-specific committees are uniquely positioned to evaluate how changes may affect medically complex candidates, biologically disadvantaged candidates, pediatric candidates, transplant program behavior, offer acceptance practices, and the broader balance of system equity and utility. Their recommendations should therefore be treated as a central part of the policy record and visibly accounted for in Board deliberations and decisions.
LifeLink of Puerto Rico encourages the OPTN Board to take seriously the concerns raised by the Lung Transplantation Committee and by members of the broader transplant community. In particular, LifeLink of Puerto Rico encourages greater transparency regarding the evidence considered, the rationale for the selected policy approach, the reasons for not adopting the Lung Committee’s recommendation, and the safeguards or monitoring that will be used to assess unintended consequences.
This is especially important when a policy change affects the relative weight of placement efficiency compared to other allocation factors. Efforts to improve efficiency and address AOOS should be carefully balanced against the need to preserve patient-centered allocation principles, including medical urgency, expected post-transplant benefit, pediatric priority, biological disadvantage, and equitable access to transplant.
LifeLink of Puerto Rico remains committed to supporting allocation integrity, improving organ placement, and engaging constructively with HRSA, the OPTN, OPOs, transplant programs, patients, donor families, and other stakeholders to ensure that allocation policy is evidence-based, transparent, equitable, and worthy of public trust.
Thank you again for considering these comments and for the continued work to advance a safe, ethical, and trusted donation and transplantation system. We remain appreciative of the volunteers and OPTN staff who steward policy development and implementation, often under complex clinical and operational realities. We would welcome the opportunity to support further discussion or provide additional operational perspective as the OPTN finalizes this proposal.

Cordially,

Guillermina Sánchez, MBAHCM
Executive Director
LifeLink of Puerto Rico

INFINITE LEGACY COMMENT –…

INFINITE LEGACY COMMENT – UPDATE ON LUNG CONTINUOUS DISTRIBUTION POLICY

Infinite Legacy (IL) appreciates the opportunity to provide comments on the Update on Lung Continuous Distribution Policy and the emergency revisions to the Lung Composite Allocation Score (CAS). Infinite Legacy is supportive of the OPTN’s efforts to improve allocation efficiency and reduce allocation out of sequence (AOOS) rates. However, we offer the following input on several critical aspects of the proposal.

First, IL expresses concern that the primary rationale for changing allocation policy centers on AOOS, rather than on medical status or urgency of deaths on the lung waitlist. Efficiency points should not come at the expense of medical urgency. According to the OPTN Benchmark report, IL has a large distribution of medical urgency points at 10.81% compared to 6.48% nationally. We are concerned that the proportional reduction in waitlist survival and post-transplant outcome weights from 25% to 23.6111% will negatively affect our local lung waitlist patients who rely on those medical urgency considerations.

Second, IL expresses concern that the weights for post-transplant survival were adjusted and decreased for our local lung waitlist patients. According to the OPTN Benchmark report, a snapshot of active lung candidates waiting on March 31, 2026, shows that active lung candidates with post-transplant survival points of less than 20 account for 72.9% of IL's waitlist, compared to 72.08% nationally. These patients stand to be disproportionately impacted by reductions in the weight assigned to post-transplant outcomes.

Third, IL expresses concern that limited modeling exists such that the full impact of this policy change cannot currently be adequately assessed. Modeling is important in policy development so that changes that negatively impact recipients are considered prior to policy implementation, rather than reactively after changes have been made. Initial modeling reported by the Lung Committee showed that some of these changes would increase waitlist mortality. The completed simulations also showed potential risks for Blood group O, short-statured patients, and pediatric patients. Additional analysis on the impact on waitlist mortality in these groups should be considered before full adoption.
IL believes that late or intraoperative declines by transplant centers contribute to AOOS. Accordingly, we recommend that the OPTN add decline codes to capture the frequency and scope of such declines. This data would further identify and guide policy changes that support timely organ acceptance and limit AOOS at its source, rather than solely adjusting the CAS weighting. IL also suggests evaluating lung waitlist removals due to patients becoming too sick to transplant, as well as lung non-use rates, in the context of this policy change. These additional metrics would provide a more complete picture of whether the policy revision is achieving its goals without unintended harm to patients.
The Decision Project®, a community engagement initiative of IL, also supports efforts to improve allocation efficiency and policy compliance while encouraging the OPTN to also consider the impact these changes may have on public trust in the transplant system. Through community-based focus groups and ongoing engagement in historically underserved communities, we consistently hear concerns regarding fairness, transparency, and equity in organ allocation. Many community members believe that geography, wealth, race, or influence affect who receives a transplant. Whether accurate or not, these perceptions remain significant barriers to donor registration and willingness to participate in donation.

As implementation moves forward, we encourage the OPTN to:
• Include public trust and community confidence as part of its evaluation of policy success;
• Develop plain-language educational materials explaining why allocation changes are made and how equity is maintained;
• Share post-implementation findings in a way that is accessible to patients, donor families, and the public, not solely transplant professionals; and
• Engage community organizations, patient advocates, and trusted local partners when evaluating future allocation policy changes.

Operational efficiency and policy compliance are important goals, but long-term success also depends on maintaining public confidence in the fairness and transparency of the allocation system. Community perspectives should remain an important component of future policy development and evaluation.

Barbara A G Iams State of…

Barbara A G Iams
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 recipient - it saved my life which has made a significant impact in my life and family. I do not think that this change needed to be emergent without the proper modeling occurring on the impact to people located in lower populated/large spaces of geographical areas representing multiple states, medical conditions, and without input from the lung transplant professionals.

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,
Barbara A G Iams

Moeller Family State of…

Moeller Family
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 we have a lung transplant candidate family member. It's imperative recommendations by the National Lung Committee of Board be part of any policy changes to the existing Lung Transplant Continuous Allocation Scoring 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,
Moeller Family

I am a histocompatibility…

I am a histocompatibility lab director in Region 1, and I am particularly interested in the impact of the change in allocation weights on the population of highly sensitized lung transplant candidates. I am concerned that the decrease in the % of available points for the CPRA attribute, paired with the increase in the % of available points for placement efficiency, will reduce access to transplant for highly sensitized candidates by decreasing the number of opportunities to find those rare donors who are HLA-compatible. I do not see any modeling data that addresses this particular population. It will be important to see how transplant rates have changed since policy implementation, and to weigh any decrease in access for candidates with tougher-to-match biology against the possible benefits of decreasing out of sequence allocation. Careful analysis of the true cause and effect of any change in out of sequence allocation will also need to be performed, since it appears that out of sequence allocation had already significantly declined prior to policy approval.

Donna Appell RN State of…

Donna Appell RN
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 Public Comment on Proposed Changes to Lung Allocation Scoring

On behalf of the Hermansky-Pudlak Syndrome (HPS) Network, I respectfully submit the following comments regarding the proposed changes to the Lung Allocation Scoring system.

The HPS Network is the only international organization dedicated to supporting individuals and families affected by Hermansky-Pudlak Syndrome (HPS), a rare genetic disorder characterized by albinism, a severe bleeding disorder, immune dysfunction, inflammatory bowel disease, and, in several subtypes, progressive pulmonary fibrosis. For individuals with HPS pulmonary fibrosis, lung transplantation is currently the only life-extending treatment option.

We are deeply concerned that the proposed allocation changes may unintentionally disadvantage patients who are short in stature, very tall, have type O blood, or have increased HLA sensitization. While these factors individually present challenges for many transplant candidates, they create an even greater burden for people living with HPS.

Because HPS is associated with a significant platelet storage pool deficiency, patients frequently require platelet transfusions throughout their lives for surgeries, severe bleeding episodes, and other medical procedures. These medically necessary transfusions increase the likelihood of developing HLA antibodies, making it substantially more difficult to identify compatible donors. HPS patients do not become sensitized by choice; sensitization is often the unavoidable consequence of life-saving medical care required because of their underlying disease.

Reducing allocation priority for highly sensitized candidates would therefore have a disproportionate impact on individuals with HPS. These patients already face extraordinary barriers to transplantation due to the rarity of their disease, the complexity of their bleeding disorder, and the limited number of transplant centers experienced in their care. Adding another obstacle based on antibody levels would further reduce equitable access to the only therapy capable of extending their lives.

Any reduction in allocation priority related to body size could further decrease transplant opportunities for this rare patient population.

We strongly encourage the committee to carefully evaluate how these proposed scoring changes may disproportionately affect patients with rare diseases and medically necessary sensitization. Allocation systems should strive not only for efficiency but also for fairness by recognizing circumstances in which biologic characteristics and prior life-saving medical treatments create unavoidable disadvantages.

The HPS Network respectfully requests that the committee reconsider these proposed changes or incorporate appropriate adjustments so that highly sensitized patients, those with type O blood, and individuals requiring more difficult donor matching because of body size are not placed at an even greater disadvantage. Rare disease patients should not receive fewer opportunities for transplantation because of complications that are inherent to their disease or the medical treatments required to keep them alive while awaiting transplant.

Thank you for considering these comments and for your continued commitment to ensuring an equitable and evidence-based lung allocation system for all 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,
Donna Appell RN

RE: Update on Lung…

RE: Update on Lung Continuous Distribution Policy

LifeLink® of Florida appreciates the opportunity to provide public comment on the Update on Lung Continuous Distribution Policy. As an organ procurement organization, LifeLink of Florida supports efforts to strengthen allocation integrity, reduce unnecessary barriers to organ placement, and mitigate avoidable organ non-use in a manner that honors donor families and best serves patients awaiting a life-saving transplant.

LifeLink of Florida recognizes that Allocation Out of Sequence (AOOS) is a concern that warrants thoughtful attention. The integrity of the allocation system depends on a shared commitment among OPOs, transplant programs, the OPTN, HRSA, and other stakeholders to support efficient, equitable, and policy-compliant organ allocation while preserving appropriate safeguards against organ non-use.

Our comment is focused on the policy development and governance process, particularly the apparent disconnect between the recommendation of the OPTN Lung Transplantation Committee and the final decision made by the OPTN Board of Directors. LifeLink of Florida acknowledges the concern reflected in many public comments that stakeholders do not fully understand why the Board proceeded with a policy change that did not align with the recommendation of the organ-specific committee charged with bringing clinical and technical expertise to lung allocation policy.

LifeLink of Florida respects the authority and responsibility of the OPTN Board to make final policy decisions, including decisions that require balancing clinical, operational, ethical, and system-level considerations. At the same time, when the Board reaches a decision that differs from the recommendation of an expert committee, it is important for the Board to clearly acknowledge that recommendation, explain the rationale for departing from it, and identify how the committee’s expertise will continue to inform implementation, monitoring, and future policy refinement.

The OPTN committee structure is a critical mechanism for incorporating specialized clinical knowledge, patient-centered considerations, operational experience, and real-world transplant system expertise into national policy. Organ-specific committees are uniquely positioned to evaluate how changes may affect medically complex candidates, biologically disadvantaged candidates, pediatric candidates, transplant program behavior, offer acceptance practices, and the broader balance of system equity and utility. Their recommendations should therefore be treated as a central part of the policy record and visibly accounted for in Board deliberations and decisions.

LifeLink of Florida encourages the OPTN Board to take seriously the concerns raised by the Lung Transplantation Committee and by members of the broader transplant community. In particular, LifeLink of Florida encourages greater transparency regarding the evidence considered, the rationale for the selected policy approach, the reasons for not adopting the Lung Committee’s recommendation, and the safeguards or monitoring that will be used to assess unintended consequences.

This is especially important when a policy change affects the relative weight of placement efficiency compared to other allocation factors. Efforts to improve efficiency and address AOOS should be carefully balanced against the need to preserve patient-centered allocation principles, including medical urgency, expected post-transplant benefit, pediatric priority, biological disadvantage, and equitable access to transplant.

LifeLink of Florida remains committed to supporting allocation integrity, improving organ placement, and engaging constructively with HRSA, the OPTN, OPOs, transplant programs, patients, donor families, and other stakeholders to ensure that allocation policy is evidence-based, transparent, equitable, and worthy of public trust.

Thank you again for considering these comments and for the continued work to advance a safe, ethical, and trusted donation and transplantation system. We remain appreciative of the volunteers and OPTN staff who steward policy development and implementation, often under complex clinical and operational realities. We would welcome the opportunity to support further discussion or provide additional operational perspective as the OPTN finalizes this proposal.

Darren Lahrman, MBA, BSRC, CPTC
Executive Director
LifeLink of Florida

The New York Cardiothoracic…

The New York Cardiothoracic Transplant Consortium (NYCTC) submits these comments in response to the OPTN’s 2026 Update on the Lung Continuous Distribution Policy. NYCTC represents patients and transplant professionals across New York State who are committed to ensuring that lung allocation policy advances equity, medical urgency, and meaningful patient benefit. We appreciate the opportunity to participate in this public comment process.

We write with serious concerns on two fronts: the governance process by which this change was enacted, and its substantive impact on patient access to transplantation and waitlist outcomes. We urge the OPTN Board of Directors and HRSA to reconsider both before these changes are allowed to stand.

A Policy Change of This Magnitude Warranted Lung Committee Recommendation — and Did Not Have It

The original lung CAS was developed over two years through a deliberate, multi-stakeholder process that included nearly 200 clinicians, patients, and administrators; and conducted prioritization exercises and rigorous data modeling in partnership with researchers at MIT. The 2026 weight adjustments — increasing placement efficiency from 10% to 15% of the total score and reducing all other attributes, including points assigned to pediatric candidates for waitlist survival and post-transplant outcomes, proportionally — were not developed through any comparable process. They were advanced by the OPTN Board of Directors without a formal recommendation from the OPTN Lung Transplantation Committee, the body expressly charged with this work.

This is not a procedural technicality. The OPTN’s governance structure exists because lung allocation decisions carry life-and-death consequences that demand expert review before they bind the transplant community. A newly constituted Board acting on weight changes of this consequence — without Committee recommendation, without public modeling data, and outside the normal comment cycle — sets a troubling precedent that we ask the OPTN and HRSA to correct. We call on the Board to suspend these changes pending formal Lung Committee deliberation and recommendation, and to make the degree of Committee support for each element of the 2026 adjustment publicly available.

The New Placement Efficiency Weight Prioritizes Distance Over Dying Patients — Without Justification

The prior CAS assigned 10% of the total score to placement efficiency — a figure the Lung Transplantation Committee adopted after extensive modeling and deliberation specifically because simulation data showed that minimizing the placement efficiency weight reduced waitlist deaths for the highest-acuity candidates. The 2026 change raises that weight to 15% and correspondingly reduces the share of the score devoted to medical urgency, post-transplant outcomes, and pediatric priority. No comparable modeling has been shared with the transplant community to justify this rebalancing, and no public data has been released demonstrating that the prior weights were causing increases in lungs allocated out of sequence; that this change was supposed to address.

The practical effect is to advance candidates closer to a donor hospital over candidates who are sicker but farther away. Without outcome data showing that the original 10% weight was producing unacceptable inefficiencies, there is no evidentiary basis for accepting that tradeoff. Absent a clear and publicly verifiable justification, NYCTC supports reverting to the prior CAS calculations.

Patients Will Once Again be Subject to Geographic Bias in Access to Transplantation

The continuous distribution framework was designed, in part, to reduce the role of geography in determining who receives a transplant. By increasing the weight assigned to the distance between donor and transplant hospital, the 2026 change moves in the opposite direction. This effect will fall unevenly on patients who are already medically complex, who have waited longer, and who have fewer transplant options. We ask the OPTN and HRSA to require a regional impact analysis before these weight changes take permanent effect.

NYCTC supports the continuous distribution framework and recognizes that policy refinement is both appropriate and necessary. What we cannot support is a consequential change to allocation weights — one that touches every candidate on the waitlist, reduces pediatric priority, and shifts the balance away from medical urgency — implemented without Lung Committee recommendation, without public modeling, and without clear evidence. We urge the OPTN Board of Directors and HRSA to suspend the 2026 weight changes; to direct the Lung Transplantation Committee to review, model, and formally recommend any revisions through the standard policy development process; and to publish post-implementation outcome data before any further adjustments are adopted.

NYCTC is prepared to engage constructively in that process. Every patient on the lung transplant waitlist deserves an allocation system whose rules were made openly, with their interests at the forefront.

Diane Ramirez State of…

Diane Ramirez
State of Residence: North Carolina

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 heart and lung transplant in 2023. I was on the list for 4 1/2 months and it felt like a lifetime. I couldn't breathe,even on high dose oxygen. I cannot imagine how horrible it would be to wait longer. Please reconsider 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,
Diane Ramirez

Jodie Rodne State of…

Jodie Rodne
State of Residence: Minnesota

Relationship to Lung Transplant: Lung 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 recipient of a double lung transplant. Altering the CAS scoring will cause mortality rates to increase.

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,
Jodie Rodne

Kristin Hammes State of…

Kristin Hammes
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 medical need should ALWAYS be prioritized over efficiency. Additionally, the opinions of experts in the field and of those who have direct experience with how allocation impacts real lives should be heavily weighted in the decision making 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,
Kristin Hammes

The HRSA/OPTN Board needs to…

The HRSA/OPTN Board needs to reverse the decision voted on during the November 20, 2025, which got rid of the CAS score input.
I received a double Lung Transplant in 2020. I would've barely survived another couple of weeks, had I not received a new pair of lungs time.
Everyone who is down on the ground level of transplants does not agree with this incorrect "emergency" decision.

If everyone in-the-know wants this decision reversed, it make one wonder the REAL reason behind the choice to delete a functional system which embraced patients real-world timing needs.

The real reason is likely that someone makes more money off this.
Follow the money!

. . . and return the CAS.

Thank you,

Todd Ware - Bigfork, MT

Jessica Mack State of…

Jessica Mack
State of Residence: Maryland

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 People who need transplants have no time to waste.

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,
Jessica Mack

Tony Hammes State of…

Tony Hammes
State of Residence: Colorado

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 While acknowledging that multiple factors need to be considered in organ placement, prioritizing recipient’s survival should be a top priority. Reducing cost with decreased survival rate for waiting recipients shifts mortality in the wrong direction. Experts unanimously rejected the changes and their opinion was ignored without explanation.

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,
Tony Hammes

PF Warriors Patient…

PF Warriors Patient Organization Response to OPTN Proposed Changes to Lung Continuous Distribution Policy:

PF Warriors appreciates the opportunity to comment on proposed changes to the Lung Continuous Distribution Policy.

We represent tens of thousands of patients who suffer from the life-threatening lung disease, pulmonary fibrosis (PF) and interstitial lung diseases. People who suffer from PF have no life-saving options except for lung transplantation. Having fair options for lung transplant, thus, are critical to the patients we serve every day.

We join other lung patient organizations including the Lung Transplant Foundation and others, as well as professional medical societies in expressing our concerns regarding the proposed changes that were first voted on at OPTN in November of 2025 and were implemented in May 2026. The implementation took place months after an emergency change decision was made without the lung patient, patient organization and professional communities’ input. Thus, this calls into question the true emergency nature of the decision that ignored the community’s opportunity for submitting input.

We are concerned with the speed at which these changes were developed and proposed and agree with our patient and physician colleagues that the “Emergency Action” that side-steps public input, in particular patient and family input, on these changes.

Our fears are deepened by the concerns of transplant professionals, who work daily to save lives via organ transplantation, have about these changes and believe that there has not been sufficient evidence to justify them. In addition, the transplant professional community only learned of the changes after they had been implemented.

We believe the proposed changes strip critical priority points from high-risk patients and are concerned that they will increase waitlist mortality, especially among patients who are small stature like women and children and patients who have type O blood.

Our concerns also include that the current non-transparent approach to the allocation system may establish a precedent that can erode the trust that patients, professionals and patient organizations have in the transplant system.

We ask that OPTN:
- Reverse the policy change to CAS.
- Delay any future changes to the CAS until sufficient time has been given to the patient, professional and patient organizations for consideration and comment.

Importantly, PF Warriors strongly supports transparency in transplantation.

Submitted by:
Teresa Barnes
Chief Executive Warrior
PF Warriors

Katherine Therrell State of…

Katherine Therrell
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 sister is the recipient of a double lung transplant and will likely need another double lung transplant. Her life, just like all of those in need of a life-saving transplant, would be significantly impact by these changes made to the transplant scoring 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,
Katherine Therrell

Jason Therrell State of…

Jason Therrell
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 sister in-law is alive today because of a lung transplant. She may need another one at some point and we need to insure everyone that needs this has access. It’s a basic human right.

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,
Jason Therrell

Lee Kedd State of Residence:…

Lee Kedd

State of Residence: Washington

Relationship to lung transplantation: Organ Donation & Transplant Community Vendor Executive

Re: Public Comment on Update to Lung Continuous Distribution Policy

Dear OPTN Board of Directors, HRSA, and members of the Lung Transplantation Committee:
Thank you for the opportunity to comment on the proposed update to the Lung Continuous Distribution policy. I appreciate the difficult work involved in balancing medical urgency, post-transplant outcomes, biological disadvantages, patient access, placement efficiency, and system compliance. I also recognize that the specific proposal under public comment is primarily directed at allocation out of sequence, logistical complexity, and placement efficiency, and that the proposed change proportionally reduces—not increases—the points assigned to the height component of the Composite Allocation Score.

My comment is focused on a related issue that this proposal highlights: the continued use of candidate height as a stand-alone biological-disadvantage allocation factor intended to approximate access to size-compatible donor lungs.
Under both the current and proposed scoring structure, height remains a distinct component of Candidate Biology, alongside ABO and CPRA. As I understand the policy, each lung candidate receives height points based on the proportion of donors the candidate is expected to be able to accept based on height compatibility. I understand the purpose of this approach: candidates who truly have fewer size-compatible donor options should not be disadvantaged in allocation. That is an appropriate and important policy goal, and I recognize that the current height-based approach reflects a meaningful historical evidence base.

My comment is not intended to suggest that size-related biological disadvantage should be deemphasized. To the contrary, size compatibility is clinically important in lung transplantation. My concern is simply that advances in imaging, available clinical data, and data infrastructure may create an opportunity to evaluate whether height remains the best available surrogate measure for that purpose.

Height can be a useful proxy, or surrogate measure, for what may be true across a population. It may indicate that some candidates are more likely to have limited access to size-compatible donor lungs. But a proxy is still an indication of what might be true; it is not the same as measuring what is true for a specific candidate’s anatomy and a specific donor lung or lung pair. Where more direct anatomic information is available, it may provide a more anatomically specific assessment of donor-recipient size compatibility than overall body height alone.

The clinical question is not simply the candidate’s height in isolation. The clinical question is whether a given donor lung, or donor lung pair, is anatomically suitable for a given recipient. Human body proportions vary substantially. Two individuals of the same height can have different thoracic dimensions. A shorter candidate may have lung or thoracic dimensions compatible with a broader donor pool than height alone would suggest. Conversely, a taller candidate may have thoracic or lung-size requirements that are more restrictive than height alone would suggest. Non-standard anthropometrics, including amputations, skeletal deformity, or unusual body proportions, further illustrate why overall height may not always reflect the actual anatomic dimensions relevant to lung size matching.

In contemporary clinical practice, donor lung offers are evaluated with imaging and clinical data. Basic lung or thoracic dimensions may be obtainable from routine chest imaging, and where CT imaging is available, more precise dimensions or volumetric assessment may be possible. Even a simple, standardized measurement—such as donor lung length or another clinically validated lung or thoracic dimension, paired with a candidate-specific anatomic parameter or acceptable size range—could be evaluated alongside the existing height-based model.

Importantly, this would not require discarding height data or disregarding the historical evidence base that used height as the known surrogate. Donor and candidate height could continue to be collected and retained for analytic continuity, validation, quality monitoring, and comparison with prior studies. The question is not whether height has been useful. The question is whether additional direct anatomic measurements could further improve precision, equity, allocation efficiency, offer acceptance, organ utilization, and post-transplant outcomes.

I respectfully suggest that HRSA, OPTN, the Lung Transplantation Committee, SRTR, and the clinical experts who have developed and maintained the lung allocation framework consider this as an opportunity for future study. One possible approach would be to begin with standardized data collection before making any change to the score itself. For example, OPTN could consider evaluating whether a simple, reproducible lung or thoracic measurement from routine donor imaging, paired with candidate-specific anatomic compatibility information, improves predictive accuracy when compared with height-based compatibility.

Such an evaluation could be conducted in a way that preserves continuity and avoids unintended disruption. Height could remain available as the current evidence-supported surrogate and as a fallback when standardized anatomic measurements are unavailable, incomplete, or not yet validated. Any future refinement should be evidence-driven and pursued only if modeling demonstrates improvements in equity, allocation efficiency, offer acceptance, utilization, and post-transplant outcomes without introducing unintended consequences.

This framing is consistent with the broader goals of OPTN modernization: better data, transparent evaluation, improved system performance, and fair allocation. It also preserves the important policy goal of protecting candidates who truly have fewer size-compatible donor options, while creating an opportunity to evaluate whether those candidates can be identified with greater anatomic precision.

I recognize that this issue may be outside the immediate scope of the current policy action, and I am not requesting that the Board resolve it within this proposal. I respectfully ask HRSA and OPTN to consider whether the continued use of height as the operative surrogate for lung size compatibility warrants further study, and whether future data collection and modeling could determine if direct anatomic measurements would strengthen the lung allocation framework.

Thank you for your consideration and for your work to improve the lung transplant allocation system.

Sincerely,
Lee Keddie

Lee D Keddie State of…

Lee D Keddie

State of Residence: Washington

Relationship to lung transplantation: Organ Donation & Transplant Community Vendor Executive

Re: Public Comment on Update to Lung Continuous Distribution Policy

Dear OPTN Board of Directors, HRSA, and members of the Lung Transplantation Committee:

Thank you for the opportunity to comment on the proposed update to the Lung Continuous Distribution policy. I appreciate the difficult work involved in balancing medical urgency, post-transplant outcomes, biological disadvantages, patient access, placement efficiency, and system compliance. I also recognize that the specific proposal under public comment is primarily directed at allocation out of sequence, logistical complexity, and placement efficiency, and that the proposed change proportionally reduces—not increases—the points assigned to the height component of the Composite Allocation Score.

My comment is focused on a related issue that this proposal highlights: the continued use of candidate height as a stand-alone biological-disadvantage allocation factor intended to approximate access to size-compatible donor lungs.
Under both the current and proposed scoring structure, height remains a distinct component of Candidate Biology, alongside ABO and CPRA. As I understand the policy, each lung candidate receives height points based on the proportion of donors the candidate is expected to be able to accept based on height compatibility. I understand the purpose of this approach: candidates who truly have fewer size-compatible donor options should not be disadvantaged in allocation. That is an appropriate and important policy goal, and I recognize that the current height-based approach reflects a meaningful historical evidence base.

My comment is not intended to suggest that size-related biological disadvantage should be deemphasized. To the contrary, size compatibility is clinically important in lung transplantation. My concern is simply that advances in imaging, available clinical data, and data infrastructure may create an opportunity to evaluate whether height remains the best available surrogate measure for that purpose.

Height can be a useful proxy, or surrogate measure, for what may be true across a population. It may indicate that some candidates are more likely to have limited access to size-compatible donor lungs. But a proxy is still an indication of what might be true; it is not the same as measuring what is true for a specific candidate’s anatomy and a specific donor lung or lung pair. Where more direct anatomic information is available, it may provide a more anatomically specific assessment of donor-recipient size compatibility than overall body height alone.

The clinical question is not simply the candidate’s height in isolation. The clinical question is whether a given donor lung, or donor lung pair, is anatomically suitable for a given recipient. Human body proportions vary substantially. Two individuals of the same height can have different thoracic dimensions. A shorter candidate may have lung or thoracic dimensions compatible with a broader donor pool than height alone would suggest. Conversely, a taller candidate may have thoracic or lung-size requirements that are more restrictive than height alone would suggest. Non-standard anthropometrics, including amputations, skeletal deformity, or unusual body proportions, further illustrate why overall height may not always reflect the actual anatomic dimensions relevant to lung size matching.

In contemporary clinical practice, donor lung offers are evaluated with imaging and clinical data. Basic lung or thoracic dimensions may be obtainable from routine chest imaging, and where CT imaging is available, more precise dimensions or volumetric assessment may be possible. Even a simple, standardized measurement—such as donor lung length or another clinically validated lung or thoracic dimension, paired with a candidate-specific anatomic parameter or acceptable size range—could be evaluated alongside the existing height-based model.

Importantly, this would not require discarding height data or disregarding the historical evidence base that used height as the known surrogate. Donor and candidate height could continue to be collected and retained for analytic continuity, validation, quality monitoring, and comparison with prior studies. The question is not whether height has been useful. The question is whether additional direct anatomic measurements could further improve precision, equity, allocation efficiency, offer acceptance, organ utilization, and post-transplant outcomes.

I respectfully suggest that HRSA, OPTN, the Lung Transplantation Committee, SRTR, and the clinical experts who have developed and maintained the lung allocation framework consider this as an opportunity for future study. One possible approach would be to begin with standardized data collection before making any change to the score itself. For example, OPTN could consider evaluating whether a simple, reproducible lung or thoracic measurement from routine donor imaging, paired with candidate-specific anatomic compatibility information, improves predictive accuracy when compared with height-based compatibility.

Such an evaluation could be conducted in a way that preserves continuity and avoids unintended disruption. Height could remain available as the current evidence-supported surrogate and as a fallback when standardized anatomic measurements are unavailable, incomplete, or not yet validated. Any future refinement should be evidence-driven and pursued only if modeling demonstrates improvements in equity, allocation efficiency, offer acceptance, utilization, and post-transplant outcomes without introducing unintended consequences.

This framing is consistent with the broader goals of OPTN modernization: better data, transparent evaluation, improved system performance, and fair allocation. It also preserves the important policy goal of protecting candidates who truly have fewer size-compatible donor options, while creating an opportunity to evaluate whether those candidates can be identified with greater anatomic precision.

I recognize that this issue may be outside the immediate scope of the current policy action, and I am not requesting that the Board resolve it within this proposal. I respectfully ask HRSA and OPTN to consider whether the continued use of height as the operative surrogate for lung size compatibility warrants further study, and whether future data collection and modeling could determine if direct anatomic measurements would strengthen the lung allocation framework.

Thank you for your consideration and for your work to improve the lung transplant allocation system.

Sincerely,
Lee Keddie

Nearly 30 years ago, organ…

Nearly 30 years ago, organ donation saved my life through a double lung transplant. Today, I am waiting for a kidney transplant. Having experienced transplantation from both sides—as a recipient and now as a transplant candidate once again—I know that organ allocation policies determine who gets the chance to live.

I am deeply concerned that this significant policy change moved forward despite the unanimous opposition of the Lung Committee and the concerns raised by lung transplant experts. Changes with the potential to affect patient survival should be supported by strong clinical evidence, a transparent process, and meaningful input from the experts who care for these patients every day.

I support improving efficiency and reducing organ waste, but medical necessity and patient outcomes should remain the highest priority in every allocation decision. I respectfully ask HRSA and the OPTN Board to restore the previous CAS point allocation and continue to put patients first.

Suzanne Brennan State of…

Suzanne Brennan
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 do not agree with the changes made to how lungs are allocated to the patient/people who desperately need them. I got my lungs under the LAS method before that changed and know quite a number of people who got theirs under the CAS when it was introduced.

As I understand it, the new methodology uses something different altogether which will primarily be related proximity. Coming from the Midwest, I am concerned that the people in our region are less likely to get lungs as quickly as before.

Last, I don’t like that the decision method was not decided with input from true experts in the process. Please go back to the way it was with 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,
Suzanne Brennan

Marci Gleicher State of…

Marci Gleicher
State of Residence: Florida

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

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

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,

Marci Gleicher

Dustin Schreiber State of…

Dustin Schreiber
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 My name is Dustin, and my life is worth fighting for. I have Hermansky Pudlak Syndrome and a lung transplant is inevitably in my future. More importantly I am more than a diagnosis… I am a son and a brother. Someday I hope to be a husband and a father. I personally understand what it means to hope and to be grateful for the kindness of strangers who help make a full life of possibilities, possible. Organ donation could one day save my life, and it saves lives every single day. One decision can change everything.

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,
Dustin Schreiber

Brice Baumgartner State of…

Brice Baumgartner
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 get to turn 40 this year because of receiving a double lung transplant over 10 years ago!! Due to Cystic Fibrosis, my lungs were so scarred and full of pus, infected thick sticky mucus. They had to do two procedures to help keep them open and held together why I waited. I only waited a few months because my severe decline happened in a few months. I stopped doing lung function tests because of the state of my lungs and hemoptysis. Thats the danger of those with cystic fibrosis, either we are too sick because of infection, too weak that we miss the window entirely or the decline is so sharp waiting any other way is not going to help save our lives.

Please reconsider the scoring and allotment of lung transplants for all patients. I received my lungs at UCLA with an amazing team that did all they could to help me to a beautiful set of new lungs. I am so grateful I lived my entire 30’s as a recipient. I was able to marry the love of my life, work in my goal industry, mental healthcare, see countless friends and family reach milestones, celebrate and travel abroad. I am humbled by this gift to continue to live and believe lots of factors need to be considered as part of evaluation and listing.
Thank you,
Brice

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,
Brice Baumgartner

L State of Residence: Oregon…

L
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 L
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 daughter was listed for over 3 years for a double lung transplant. We had to travel to an out-of-state hospital for her transplant as there are no lung transplant centers in our state., a distance of over 5 hours by car. The changes being proposed will endanger the lives of patients on waiting lists and possibly our daughter should she need another 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,
L

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

The Lung Transplant Program…

The Lung Transplant Program of Penn Transplant Institute supports ongoing evaluation of the lung continuous distribution framework and recognizes the importance of addressing allocation out of sequence (AOOS). However, we do not believe that sufficient evidence has been presented to justify the policy change or the process through which it was adopted. Our Program strongly opposes this proposal and does not support continuation or permanent adoption of the policy change in its current form. For additional information, please refer to the public comment submitted by ISHLT - https://www.ishlt.org/list-pages/resources/ishlt-response-to-optn-proposal--update-on-lung-continuous-distribution-policy. Thank you for your consideration and the opportunity to comment.

We encourage the OPTN

Erica Cox State of Residence…

Erica Cox
State of Residence: Washington

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 one of my dearest friends is a recipient and will also need another lung transplant in the near 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,
Erica Cox