Representatives Ken Calvert of California and Mike Quigley of Illinois introduced the Accelerating Access to Critical Therapies for ALS Reauthorization Act (ACT for ALS Reauthorization Act) of 2026, according to an April 8 announcement. The legislation aims to help people living with amyotrophic lateral sclerosis (ALS) continue accessing promising treatments while advancing scientific understanding of neurodegenerative diseases. The Energy and Commerce Health Subcommittee is scheduled to hold a hearing on the bill on April 15.
The ACT for ALS Reauthorization Act seeks to extend key programs supporting ALS research and patient access, which advocates say are crucial given the disease’s fatal nature. The legislation is supported by several organizations focused on neurodegenerative diseases.
“The ACT for ALS was a landmark law that gave hope to Americans impacted by ALS,” said Rep. Ken Calvert. “It’s now critical that Congress builds upon that milestone by passing the ACT for ALS Reauthorization Act to continue our progress in researching cures and treatments. The courageous and extraordinary ALS advocates who helped us pass the ACT for ALS are a source of inspiration and the reason we have reached this moment. I appreciate the leadership of my fellow ALS Caucus colleague Rep. Mike Quigley in sponsoring this bill and working together with me to advance these bipartisan solutions.” Quigley said, “Every dollar put towards ACT for ALS programs has improved our understanding of ALS and allowed people living with ALS to access promising treatments. We made great progress during the first five years of these programs, but ALS remains a 100% fatal disease. The federal government must continue supporting efforts to end this disease once and for all.” He added, “The passage of ACT for ALS was one of the greatest accomplishments of my career. I am proud to work alongside Congressman Calvert, Senators Murkowski and Coons, and the incredible organizations fighting neurodegenerative diseases to ensure this work continues.”
If enacted, Calvert’s and Quigley’s legislation would reauthorize existing ACT for ALS programs for five years, codify Department of Health & Human Services guidelines regarding Expanded Access Program eligibility, require a new Food & Drug Administration five-year action plan, and mandate a Government Accountability Office report on program implementation in 2030.
In the Senate, Senators Lisa Murkowski from Alaska and Chris Coons from Delaware are leading companion efforts: “ALS is a disease that takes from us: it steals movement, communication, and tomorrows,” said Senator Coons. “ACT for ALS funds research to stop ALS from claiming more lives…and give hope…to those already fighting its cruelty.” Senator Murkowski said: “ALS is indiscriminate…it will take all of us working together…to support those affected…I’m honored to introduce [this] reauthorization…which will break down treatment barriers.” Advocacy groups such as I AM ALS have endorsed the measure; CEO Andrea Goodman called it urgent because “ALS doesn’t wait,” crediting prior legislative action with expanding access to therapies since 2021.
Ken Calvert has served in Congress representing California’s 41st District since 1993 according to official records. He was born in Corona, California in 1953 where he currently resides according his biography. He graduated from San Diego State University with a BA degree in 1975 as reported by his office.
Sharon Hesterlee at Muscular Dystrophy Association described early results as encouraging but emphasized continued momentum through reauthorization: “Early results are very encouraging but reauthorization is necessary…” Sheri Strahl at the ALS Network stressed urgency due limited options facing families: “Families do not have luxury waiting…reauthorization essential sustaining momentum…” Calaneet Balas at The Association stated: “More accountability…Faster pathways…This bill reflects what our advocates demanded…”
Supporters argue that extending these initiatives could further accelerate drug development approaches not only benefiting rare neurodegenerative conditions like ALS but also providing broader lessons about innovation frameworks.
