Our mission is to improve the lives of lung transplant patients and their families.

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Protect the Future of Lung Transplantation

New policy changes threaten to increase waitlist mortality by prioritizing "Placement Efficiency" over medical necessity. Help us tell HRSA and the OPTN that patients must come first.

Disclaimer: This presentation, published on May 20th, 2026, reflects publicly available information, OPTN materials, SRTR data, and concerns raised by members of the lung transplant community. It is intended for educational purposes and to ensure you feel confident using your voice during the open public comment window.

Unprecedented Process

This major policy change bucked decades of protocol by bypassing a prospective public comment period. No clinical evidence was provided to justify using the "Emergency Actions" pathway at the time of the vote.

Expert Consensus Overridden

The OPTN Lung Committee—comprised of subject matter experts and community representatives—voted unanimously against these changes to the Composite Allocation Score (CAS).

Increased Mortality Risk

Initial modeling suggests these changes will increase waitlist mortality for high-risk, difficult-to-match candidates. The shift from extensive pre-implementation modeling to a "fix it later" approach endangers lives unnecessarily.

The public comment period closes on July 3, 2026.

Please submit your feedback before then to ensure your voice is counted!

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1. Fill out the form. Save.

Fill out the form to see your letter take shape. Click the "Save" button.

2. Copy

Click the button "Copy My Finished Text" button. This will automatically save your entire customized message to your phone or computer's clipboard.

3. Open the public comment site

Click the "Go to Public Comment Site" button. The official government comment portal will open up in a brand new browser window so you won't lose this page.

4. Paste and submit your letter

Scroll down (way down) to locate the main comment box on the official portal page. Right-click inside it and select Paste (or tap and hold on mobile and select Paste). Fill out the required contact fields (Your name, your email address) on their form, and click "save". If you do not see your comment on the HRSA website right away, do not worry! We are finding that it is taking up to 48 business hours for some comments to get posted.

Public Comment Sample Letter

Public Comment Sample Letter (#16)

Letter Preview

Fill out the form to see your letter take shape. Once you save, the copy button will be enabled.

2. Go to Public Comment Site

Lung Disease Patient Advocacy Organizations

This is not about one organization. It is about ensuring clarity and transparency for patients nationwide. This message/effort is supported by multiple national patient advocacy organizations across the pulmonary and transplant space.

Multiply Your Impact!

1. Download

by right-clicking the image below to save it onto your desktop. You can also simply drag it onto your desktop.

2. Log on

to your favorite social media site, such as Facebook or Instagram.

3. Copy and Paste

one of the sample messages below into your status update—or create your own message

4. Upload

the image saved onto your desktop to accompany your status update.

5. Post

your status update and encourage others to take action.

Sample Posts/Messages

Option 1:  (Best for Instagram/Facebook)
I just officially submitted my public comment to the OPTN Board of Directors, urging them to reverse the recent policy changes to the Lung Transplant Continuous Allocation Score (CAS).
The recent decision to reallocate critical points away from biologically disadvantaged patients was made without a prospective public comment period and went against the unanimous warnings of lung medical experts.
Policy data isn't just numbers—every point represents a human life, a family, and a second chance. 
We only have until July 3, 2026 to make our voices heard before the board decides if this change becomes permanent. If you are a recipient, candidate, caregiver, or ally, our community needs you right now.
👉 Go to lungtransplantfoundation.org/act to copy our template letter and submit your comment in less than 60 seconds. Let's keep patient equity at the center of transplant policy! #ProtectTheCAS #LungTransplant #OrganAllocation #PatientEquity #LungTransplantFoundation


Option 2:  (Best for X / Twitter)
Every data point in transplant policy is a human life.  I just submitted my official public comment to the OPTN Board to protect fair lung allocation.
The deadline to act is July 3, 2026. Join me and make your voice heard right now: lungtransplantfoundation.org/act #ProtectTheCAS #LungTransplant

 

Option 3: Personal & Story-Focused (Best for LinkedIn or personal Facebook posts)
As someone connected to the incredible lung transplant community, I know firsthand how vital it is that organ allocation policies are rooted in clinical evidence, patient equity, and expert medical consensus.
That’s why I just submitted my public comment asking HRSA and the OPTN Board to reverse the November 2025 vote and restore the CAS point allocations to their original levels. The recent emergency shift prioritized "efficiency" at the expense of high-risk patients—without letting the public weigh in first.
The open comment window is closing on July 3, 2026.
If you care about fair healthcare access and protecting vulnerable patients, please take a minute to speak up. The Lung Transplant Foundation has built a simple, step-by-step tool with a pre-formatted letter to make it easy: lungtransplantfoundation.org/act  we can ensure specialized medical expertise stays at the center of transplant policy.

Reference:

Current OPTN Board members.  https://www.hrsa.gov/optn/about/governance/board-of-directors

Regarding modernization: https://www.hrsa.gov/optn-modernization/learn-more-about-modernization

Regarding the New Board of Directors: https://www.hrsa.gov/about/news/press-releases/optn-new-board#:~:text=The%20newly%20elected%20Board%20of,terms%20on%20July%201%2C%202025.

Lung transplant candidates on the waitlist https://srtr.transplant.hrsa.gov/ADR/Chapter?name=Lung&year=2023

HRSA decided that a solution to Allocation out of Sequence needed to start with Lungs -  https://vimeo.com/event/5527361/5310d5a605

“..voted unanimously not to change the CAS point allocation system…” https://www.hrsa.gov/sites/default/files/hrsa/optn/20251117-lung-summary.pdf

https://www.hrsa.gov/optn/policies-bylaws/policy-issues/allocation-out-of-sequence-aoos

2025 OPTN Board meeting video, https://vimeo.com/event/5527361/5310d5a605

Regarding New CAS in effect: https://www.hrsa.gov/optn/news-events/news/changes-lung-cas-now-in-effect

OPTN bulletin sent out on May 7th 2026 citing "in accordance with the emergency actions pathway established in OPTN Management and Membership Policies E.7. "

Lung Continuous Distribution Two-Year Monitoring Report DHHS Contract No. 250-2019-00001C Date Completed: May 8th, 2025 Prepared for: Lung Transplantation Committee Committee Meeting Date of Meeting: May 8th, 2025 By: Samantha Weiss, MS and Chelsea Hawkins, PhD UNOS Research Department

The Lung Transplant Foundation is a 501(c)3 non-profit organization.
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