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AST Message on OPTN Modernization and Advocacy

We know our members are closely following the wide range of issues that are impacting transplantation, including living donor protections, OPTN Modernization, research funding, immunosuppression access, donation practices, and workforce challenges. The AST is actively engaged across each of these areas, working with lawmakers, federal agencies, and partner organizations to ensure the concerns of transplant professionals are heard and acted upon. Our goal is to strengthen the system, support our members, and improve care for the patients and families we serve.

Stay Informed, Share the Facts
Recent media coverage has caused confusion and led thousands to remove themselves from the organ donor list. As we continue advocating for policies that protect donors and transplant patients, you can help by sharing accurate information. Read and share this article with your patients or on your social channels: Read the article.

Living Donor Protection Act
The AST continues to support passage of the Living Donor Protection Act (LDPA), which seeks to eliminate insurance discrimination against living organ donors. In addition, the Living Donation Incentives Task Force is finalizing a position statement on financial neutrality and eliminating disincentives for living donors. This document will be presented to the AST Board for review and approval in the coming weeks. Contact your members of Congress about the LDPA.

OPTN Modernization
The AST remains deeply engaged in discussions around OPTN Modernization. This includes topics such as:
 

  • Allocation out of sequence – Ongoing monitoring of potential impacts on patients and programs.

  • Data transparency – Advocating for consistent, timely, and accessible OPTN data.

  • HRSA directives – Tracking how HRSA’s new data directives, and OPTN registration changes will influence the OPTN’s work and calling for transparent communication about these processes.

  • Modernization – Continued participation in broader OPTN modernization efforts.
     

NIH / Research Funding
We continue to advocate for maintaining - and where possible, increasing - federal research funding for transplantation and immunology, recognizing the critical role of NIH support in advancing the field. Contact your members of Congress about this here.

Specific areas of engagement beyond advocating for overall increased funding include: calling for changes to NIH’s flat fee direct cost adjustments and carefully reviewing the Administration’s recent executive order, "Improving Oversight of Federal Grantmaking," which could reshape the federal grant making process.

Transplant Therapeutics Consortium / iBox
The Society is focusing its efforts at the FDA commissioner level to advance regulatory acceptance of the iBox Scoring System to serve as a reasonably likely surrogate endpoint in transplant for use in the FDA accelerated approval pathway. Learn more about iBox here.

Federal Oversight of OPOs
On September 18, the U.S. Department of Health and Human Services (HHS) announced the mid-cycle decertification of the Life Alliance Organ Recovery Agency at the University of Miami - the first such action ever taken against an OPO. Alongside this decision, HHS announced a package of reforms to strengthen the U.S. organ transplant system. Read our full statement here.

Immunosuppression Patient Survey
Results from the AST’s patient survey have generated valuable insights into unmet immunosuppressant needs. We are leveraging this awareness to encourage improvements in drug development and the immunosuppression pipeline. We encourage all members to view the article in AJT (available with open access).

DCD / NRP

  •  We are currently working on resources to educate the public on DCD organ donation.

  • The AST is currently working with the American Society of Transplant Surgeons (ASTS) on a joint statement on NRP standards. Both societies are engaged with HRSA on the development of national standards for normothermic regional perfusion (NRP).
     

The AST remains committed to advancing these advocacy priorities on behalf of our members. We will continue to keep you informed as these efforts progress and ensure the transplant community’s voice is represented in every decision that shapes the future of our field.

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This content was developed independently by AST and supported by a financial contribution from Sanofi