Congress clears bill extending ALS research and treatment-access programs through 2031, sends it to the President
Congress has cleared a bill that would extend federal programs supporting research and access to experimental treatments for amyotrophic lateral sclerosis, or ALS, and sent it to the President. The measure, H.R. 8205, the Accelerating Access to Critical Therapies for ALS Reauthorization Act of 2026, was presented to the President on Oct. 26, 2026, the final step before it can be signed into law.
The bill renews programs created by the original ACT for ALS, which became law in December 2021. According to the bill's official summary, it reauthorizes through fiscal year 2031 three programs: grants from the National Institutes of Health for research on investigational drugs for people with ALS who are not eligible for clinical trials; grants from the Food and Drug Administration for developing therapies for ALS and other neurodegenerative diseases; and a public-private partnership involving the FDA and NIH that supports the development and regulatory review of treatments for those diseases.
ALS, also known as Lou Gehrig's disease, is a progressive and fatal condition that attacks the nervous system, causing muscle weakness and eventually paralysis.
The bill also makes changes to how the programs run. The summary says the NIH, when considering whether to renew a grant, must assess available information on the safety and effectiveness of the investigational drugs, and must require grantees to promptly report serious and unexpected adverse events. The FDA must publish a plan describing the actions it will take over five years to foster the development of safe and effective drugs and to help patients access investigational drugs, and later publish a report on what it has done.
The bill was introduced on April 6, 2026, by Representative Mike Quigley, an Illinois Democrat, along with Representative Ken Calvert, a California Republican, and drew 103 cosponsors. The House Energy and Commerce Committee reported it favorably after approving it 46-0 in a committee vote. The House passed it by voice vote on July 22, and the Senate passed it without amendment by voice vote on Sept. 28.
Supporters framed the reauthorization as a way to sustain momentum for patients who have few options. On the House floor, Quigley, the sponsor, said that since the first bill passed, "we have been able to secure over $350 million in Federal funding for these programs," and told people living with ALS that "Congress hears you and we are here for you." Representative Brett Guthrie of Kentucky said he rose "in strong support" of the bill, saying it was "imperative that we pass this bill today to continue advancing research and therapeutic development in the fight against this disease." In the Senate, Senator Lisa Murkowski of Alaska, co-chair of the Senate ALS Caucus, said the reauthorization "continues that continuity so that the work that has been built continues and it doesn't have to stop and restart."
At an April subcommittee hearing, Brian Wallach, who has lived with ALS for eight years and co-founded the advocacy organization I AM ALS, urged lawmakers to "swiftly pass H.R. 8205," calling it "not just important — it's urgent."
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