The ACT for ALS, also known as the Accelerating Access to Critical Therapies for ALS Act, was signed into law on December 23, 2021. The legislation provided $100 million annually from 2022 through 2026 to support ALS research, accelerate drug development, and help individuals who are not eligible for clinical trials access to investigational treatments through expanded access programs.
As this five-year funding period concludes, a decision will be made before the September 30, 2026, expiration date on whether the ACT for ALS will be reauthorized.
About the ACT for ALS
When the ACT for ALS became law in 2021, the legislation established the following:
- A federal public-private partnership to advance understanding of ALS.
- A five-year FDA action plan to accelerate drug development and improve access to investigational therapies.
- New grant programs supporting clinical trials, expanded access programs, and natural history studies.
Why Renewal is Considered in 2026
The ACT for ALS includes provisions that are time-limited and scheduled to expire in 2026 unless reauthorized by Congress. If the act is not renewed, associated research funding and programs that support access to investigational therapies would be subject to change or discontinuation.
For fiscal year 2026, Congress has approved $315 million in federal funding related to ALS research and programs, which is currently pending the President’s signature.
Efforts Led by The ALS Community Driven Effort
Advocacy organizations such as I AM ALS, ALS United, ALS Network, and the ALS Association have begun early outreach to ensure the perspectives of the ALS community are represented. The message is straightforward: the focus is on sustaining progress, not politics. Reauthorization would allow scientists, clinicians, and federal agencies to continue building on the foundation that has already been established.
Andrea Pauls Backman, founder of ALS Strategy Consulting, who has led a working group focused on the reauthorization of the ACT for ALS over the last year, offers this: The ACT for ALS has, in a relatively short time, bridged critical gaps in ALS research and care by expanding access to investigational treatments while building the scientific infrastructure and creating pathways to move therapies to approval faster. We cannot risk losing years of progress in the fight against this deadly disease. Reauthorization keeps these national research engines available to advance therapeutic interventions, honors the contributions of those who have participated in these studies, and gives us the best chance to get more effective therapies to more people.
What to do next
- Read more about the language of the ACT for ALS here.
- Learn more about congressional research funding for ACT for ALS here.
- Learn about additional Federal Public Policy Priorities through the ALS Association here.
- Learn more about how the team at ALS TDI helped initiate the Congressionally Directed Medical Research Program (CDMRP) here.