Update on Lung Continuous Distribution Policy

William Simmons
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 have rare genetic mutation that caused my ILD. I almost died waiting for my transplant. If these changes are made patients in my situation will die. DON’T MAKE 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,
William Simmons

Dr Haytham Elgharably & Dr. Satish Chandrashekaran
State of Residence: Florida

Relationship to Lung Transplant: Surgical and Medical Directors of Lung Transplant Program at Tampa General Hospital

We respectfully urge the HRSA/OPTN Board to reconsider and reverse the decision approved during the November 20, 2025 Board meeting that removed five points from recipient medical urgency categories within the Composite Allocation Score (CAS) and reassigned them to the placement efficiency category. We strongly support restoring the CAS weighting and ratios to the pre-November 20, 2025 structure.

A substantial proportion of lung transplant candidates in the United States are older adults. Approximately 48% of candidates are age 60 years or older, and nearly 9% are age 70 years or older. At the same time, Idiopathic Pulmonary Fibrosis and other fibrotic interstitial lung diseases now account for a growing proportion of lung transplants nationally, representing approximately 35–45% of transplant indications compared with approximately 25–35% for COPD.

This distinction is critically important because fibrotic lung disease has a far more rapid and unpredictable mortality trajectory than COPD. IPF predominantly affects older adults between ages 60 and 70, with a median age at diagnosis of approximately 65 years. The median post-transplant survival for patients with IPF is approximately 4.9 years. Despite somewhat lower long-term survival compared with younger recipients, lung transplantation still provides substantial survival and quality-of-life benefit for these patients.

However, the current CAS framework already places older fibrotic lung disease patients at a disadvantage because predicted long-term post-transplant survival is weighted heavily within the allocation model. As a result, older candidates often receive lower CAS scores despite deriving meaningful benefit from transplantation.

The proposed policy change further compounds this disadvantage by increasing the weighting of placement efficiency from 10% to 15%. The proposed changes may unintentionally decrease organ offers to older recipients with fibrotic lung disease because geographically distant donor offers would receive lower placement efficiency scores within the revised CAS framework. As a result, candidates who may require broader geographic organ sharing to obtain a suitable donor lung could become less competitive in the allocation system, potentially leading to longer waitlist times and increased waitlist mortality for older or medically complex patients.

This concern is especially relevant in states such as Florida, where approximately 22% of the population — more than 5 million individuals — is older than 65 years. As the population ages, the prevalence of fibrotic lung disease will continue to increase, making equitable access to transplantation for older adults an increasingly important national issue.

We recognize and support the OPTN’s goal of improving allocation efficiency and maximizing the overall utility of donor organs. However, allocation systems must also preserve equity and individualized patient-centered decision-making. Older patients with fibrotic lung disease may not demonstrate the same projected long-term survival as younger recipients, yet they still derive substantial survival and quality-of-life benefit from transplantation.

Importantly, transplant programs already have the ability to manage travel-related costs and logistical considerations at the program level. Programs that do not wish to travel long distances for donor procurement can already utilize UNet filters and organ acceptance practices to decline such offers. Therefore, increasing the weighting of placement efficiency within the CAS framework may unnecessarily penalize the broader transplant system and disproportionately disadvantage older patients with fibrotic lung disease who may depend on broader geographic organ sharing to receive transplantation.

Programs willing to pursue donor lungs aggressively and expand access for their waitlisted patients should continue to have the flexibility and ability to do so without being disadvantaged by the allocation system.

For these reasons, we respectfully request that the HRSA/OPTN Board restore the prior CAS weighting structure and reconsider the increased emphasis on placement efficiency to avoid unintended adverse consequences for older patients with fibrotic lung disease awaiting lung transplantation.

Thank you!
Sincerely

Drs Haytham Elgharably & Satish Chandrashekaran

I am writing to strongly oppose implementation of the recent change to the Lung Composite Allocation Score (CAS) points and ratios that was made to address issues with Allocation Out of Sequence (AOOS) and to request the OPTN Board reverse its decision and return to the prior CAS state. AOOS is an issue across all organs and increases when new policies are introduced as it takes time for members of the community to learn and implement a new system. In addition the shifting environment in organ transplantation with ever-increasing numbers of donation after circulatory death and technological advances influence the organ donation and procurement environment. That said, no efforts were made by HRSA to enforce the rules in place to address AOOS and instead pushed to implement changes to the lung CAS system.

Data indicates that AOOS was improving due to higher public scrutiny before this CAS policy change, and based on this, the Lung Committee unanimously voted against changing CAS, favoring instead enforcement of current policy. Data now shows that AOOS has decreased significantly, to pre-CAS levels suggesting that the Lung Committee was, in fact, correct in its assessment. Additionally, the proposed change to CAS is likely to increase waiting list times and wait-list deaths, which should be avoided at all costs. As a transplant physician, our duty is to our patients and to helping as many people in need of a lung transplant to obtain this life-saving treatment.

The OPTN Board should reverse this decision and work with the Lung Committee to further refine lung allocation, allowing the experts in lung transplantation to guide this process. CAS has been a significant improvement, leading to short wait-list times and fewer wait-list deaths, than the previous LAS system, and it can be made even better, if the experts are entrusted to do the job they were elected to do. This policy change does not improve CAS, does not improve AOOS, and only harms patients through increasing the risk of dying while awaiting a lung transplant.

As a lung transplant survivor there's some hiccups along the way that can cause patients to reject even if patients lose the weight or do all the treatments that the doctors advice there can still be rejecting. And to be denied a second lung transplant is crazy know the patients is doing everything they can to survive. As a young single mother of 3, what do you tell your kids. To worry what will happen to them when your gone or if they will remember you since they are soo young is heart breaking.

This comment addresses the OPTN Board’s November 20, 2025 emergency action modifying the Lung Composite Allocation Score (CAS) and calls for its reversal on two distinct grounds.
The first is immediate: the reweighting chose the wrong instrument. Placement efficiency and allocation out of OPTN sequence (AOOS) are real problems, but addressing them by proportionately reducing points assigned to biological disadvantage, pediatric access, waitlist survival, and post-transplant outcomes inflicts an equity cost on candidates the system already recognizes as structurally disadvantaged. The reweighting should be reversed not because efficiency is unimportant, but because this remedy trades away equity to solve an operational problem that better-designed structural reforms can address directly.
The second is structural: this change is the latest in a chain of corrective patches applied to downstream consequences of earlier decisions, rather than a correction of the root design problem. That problem is the absence of an operational window of transplant concept, a mechanism that recognizes transplant benefit is not maximized by transplanting the sickest candidate available, and that beyond a threshold, rising pre-transplant acuity reduces rather than increases post-transplant value.
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I. The Root Pathology
The March 2023 CAS introduced genuine and important advances: a 1:1 equalization of waitlist urgency and post-transplant survival weights, a 5-year post-transplant outcomes horizon, and formal biological disadvantage attributes for height and CPRA. On paper, the 1:1 ratio should have been the most powerful check on acuity runaway since 2005. That it has not arrested escalation is itself informative. The scoring system operates only on listed candidates. It cannot reach the upstream referral decision, the listing threshold, or the community pulmonologist’s evolving sense of when a patient is sick enough to send. Nor can it correct the financial misalignment between bridging procedure reimbursement, which is independent of whether transplantation is achieved, and the outcomes the scoring system rewards. Referral habituation and reimbursement misalignment operate entirely outside the allocation score’s jurisdiction. They explain why acuity runaway persists despite improved score design, and why allocation reform alone cannot fully solve the problem.
Each subsequent policy problem has been treated as isolated and discrete. AOOS is framed as a logistics problem. Blood type O disadvantage is framed as a blood type problem. Geographic inequity is framed as a circle-size problem. In reality, each interacts with the same foundational bias toward late, high-acuity transplantation in an environment with no ceiling on diminishing benefit. Addressing them one by one through score reweighting, each time trading equity for the problem at hand, is a cycle that cannot correct itself.
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II. Geography, the DSA Brake, and a Better Efficiency Reform
The 2017 removal of the DSA as the first allocation unit and its replacement with a fixed 250 NM circle was consequential beyond its stated geographic purpose. The DSA had served an underappreciated function: it acted as an organic brake on acuity runaway. When acuity could only rise within a bounded local donor pool, listing a very high-acuity patient in a low-volume DSA meant accepting a high probability of waitlist mortality before an offer arrived, which imposed discipline on listing decisions that the post-2017 national sharing environment substantially eroded.
The 250 NM circle is also a crude equity instrument, because a fixed radius captures vastly different donor populations across regions of different density. The more coherent reform is a population-adjusted first allocation unit, calibrated to encompass a standardized donor population equivalent based on three years of SRTR deceased donor data for each center’s geography. This produces smaller radii in donor-dense regions and larger radii in donor-sparse regions, improving equity and placement efficiency simultaneously, without requiring biology points to be reduced.
The four structural alternatives to score reweighting for improving efficiency are: a population-adjusted first allocation unit; offer sequencing that formalizes what experienced OPO coordinators already know from the field, namely that certain programs for certain donor profiles will decline and routing offers through them wastes preservation time and degrades organ quality for every subsequent candidate; center- and OPO-level decline accountability through existing OPTN compliance infrastructure; and dyad-level logistics scoring that incorporates organ-specific ischemic time tolerance and candidate-specific physiological compatibility at offer generation rather than distributing that judgment across static listing filters.
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III. ABO Policy and the Cumulative Harm Problem
Shortly after March 2023 CAS implementation, a significant and unanticipated decline in blood type O transplant rates was observed, attributed to removal of ABO-identical priority, which had been underweighted in simulation modeling. The September 2023 correction rescaled blood type O points to 5.0 and improved transplant rates. The November 2025 action then reduced those points to 4.7222, along with CPRA and height points. Once the system has recognized real biological disadvantage and already had to correct an underestimation of blood type O harm, those protections should not be weakened again as the price of solving a different operational problem.
More critically, the cumulative impact of the three sequential ABO changes, March 2023 removal of identical priority, September 2023 partial correction, and November 2025 dilution, has not been modeled together. No published analysis has assessed their compound effect on blood type O transplant probability relative to the pre-CAS baseline. That gap must be closed before any further ABO-related change is made in either direction.
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IV. Process Concern
The Lung Transplantation Committee is reported to have unanimously opposed the November 2025 change. Overriding unanimous expert opposition through an emergency pathway, for a policy then implemented six months later, sets a problematic precedent. An implementation gap of six months is itself evidence the emergency threshold was not met. The twelve-month expiration clause and the public comment process it triggers is the opportunity to correct this.
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V. The Cascade of Acuity Runaway
When the system continuously rewards the most critically ill candidates without a ceiling on diminishing benefit, several downstream effects compound. Referring pulmonologists who observe that moderate-acuity candidates yield no allocation advantage normalize later referral, delaying patients within the benefit window. Patients who wait at high disability accumulate frailty, pulmonary hypertension, and nutritional depletion that are iatrogenic consequences of the system, not their underlying disease. It is further suspected, though difficult to prove without a stable counterfactual, that acuity runaway has reduced cumulative longevity from disease onset to death, that paradoxically transplanting patients pushed beyond the optimal benefit window may have shortened lives the system was designed to extend. Team burnout and operational strain from routinely transplanting extraordinarily ill patients degrades the workforce that serves all candidates.
The ethical dimension is equally important. The normalization of high-acuity transplantation has created tolerance for aggressive pre-candidacy bridging interventions, including ECMO bridging, bariatric surgery, aspiration mitigation procedures, and cardiac interventions, in patients with a low probability of ever achieving successful transplantation. In a fee-for-service environment, these procedures generate substantial institutional revenue independent of whether transplantation is ultimately achieved. The financial incentive is not necessarily the dominant motivation, but it is structurally present and cannot be dismissed as irrelevant to understanding why the threshold for such interventions has drifted lower. Centers habituated to transplanting extraordinarily ill patients begin to define “potentially transplantable” at a threshold that would previously have been considered prohibitive. Interventions with a high probability of futility are then offered to patients and families who, placing profound and legitimate trust in their transplant teams, are not equipped to critically evaluate the cumulative probability of the full trajectory. The moral injury is systemic rather than individual, and the transplant community has an obligation to name it honestly.
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VI. Recommendations
1.    Reverse the November 2025 CAS reweighting and restore prior attribute weights.
2.    If a placement efficiency increase to 15% is retained, fund it exclusively by reducing pediatric priority points from 20.0 to 15.0, restoring all other attributes to pre-November 2025 levels. A pediatric candidate carrying 15.0 points retains a structural advantage insurmountable by any adult candidate at any clinical severity. The reduction is not a diminishment of pediatric access in any practical sense.
3.    Replace the binary pediatric cutoff with an age-graded priority curve tapering from maximum at youngest ages through approximately age 21, eliminating the cliff-edge discontinuity at the 18th birthday and the perverse listing incentive it creates.
4.    Develop a population-adjusted first allocation unit based on donor population density rather than fixed 250 NM radius, restoring a partial organic brake on acuity runaway while improving equity and efficiency.
5.    Formalize OPO field knowledge into offer sequencing logic by incorporating predicted acceptance probability and historical center behavior into the match run, reducing AOOS by aligning algorithmic sequence with clinical and operational reality.
6.    Build dyad-level logistics scoring incorporating organ-specific ischemic tolerance and candidate-specific physiological compatibility at offer generation.
7.    Model cumulative ABO policy impact across all three sequential changes before any further ABO modification.
8.    Retain and strengthen CAS advances: the 1:1 urgency-to-outcomes ratio, the 5-year post-transplant horizon, and the height and CPRA biological disadvantage attributes.
9.    Introduce an operational window of transplant concept into CAS design whereby candidates beyond a projected benefit threshold accrue diminishing priority. An allocation system with no concept of transplanting too late is incomplete and ultimately harmful.
10.   Address the behavioral and financial ecology of acuity runaway directly by advocating to CMS for center-level metrics linking bridging reimbursement to transplant outcomes; commissioning SRTR to publish center-level ratios of bridging procedures to successful transplantation; and requiring informed consent for pre-candidacy bridging to include full sequential probability from procedure to recovery to listing to transplant to meaningful survival, not individual step estimates in isolation.
11.   Mandate prospective public comment for all allocation changes except those meeting a strictly defined emergent public health threshold. A six-month implementation gap is evidence that threshold was not met here.
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VII. Conclusion
The November 2025 reweighting should be reversed. If efficiency gains are nonetheless retained through score adjustment, they should be funded exclusively from pediatric priority points, which remain overwhelmingly dominant even at 15.0, and not from biology, urgency, or outcomes attributes that protect the most vulnerable candidates.
The deeper problem is the absence of a window of transplant concept missing from lung allocation since 2005, compounded by a behavioral and financial ecology recalibrated toward ever-higher acuity and ever-more-frequent bridging procedures without honest accounting from bridging to recovery to listing to transplant to successful transplant. That ecology operates upstream of every allocation formula and beyond the reach of every score reweighting. It is sustained by financial incentives that reward procedural volume regardless of outcome, a referral culture that has normalized the abnormal, and an informed consent environment where patients decide from desperation and trust rather than compound probability. The current comment period is an opportunity not only to correct the November 2025 reweighting, but to begin the harder reckoning the field has owed its patients since long before this band-aid was applied.
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I am an employee of an OPTN member institution, but this comment is submitted in my personal capacity.