Formal Letter to OPTN: Advocating for Lung Allocation Transparency

The Lung Transplant Foundation has submitted a formal letter to the Organ Procurement and Transplantation Network (OPTN) requesting greater clarity and transparency regarding recent changes to lung allocation policy, including the Composite Allocation Score (CAS).

This letter reflects a unified voice across the transplant and rare disease community, with more than 20 patient advocacy organizations signing on in support. Together, we have asked for clarification on several key issues, including the timeline for public comment, implementation of policy changes, and how expert recommendations were incorporated into the decision-making process.

While we received confirmation that our letter was received, we have not yet received a response. As a result, the Lung Transplant Foundation has taken an additional step by resubmitting the letter through OPTN’s formal Critical Comments and Directives process, ensuring that these concerns are formally documented and reviewed.

We remain committed to advocating for transparency, accountability, and meaningful patient inclusion in decisions that directly impact access to lung transplantation.

Lung Transplant Foundation shares a full update: