Murkowski-backed bill extending ALS treatment access programs for five years passes Congress

A bill co-led by Alaska Sen. Lisa Murkowski that would extend federal programs giving people with ALS a path to experimental treatments for five more years has passed Congress, and the measure now awaits the president's signature.

The Senate passed the ACT for ALS Reauthorization Act of 2026 by unanimous consent, a procedure that passes a bill if no senator objects, on Monday night, two days before the programs' authorization was due to lapse Sept. 30. Murkowski's office announced final passage Tuesday. Murkowski and Sen. Chris Coons of Delaware co-chair the Senate ALS Caucus and introduced the Senate bill on April 30.

"For those living with ALS, every day matters. They cannot afford disruptions in research, treatment access, and support," Murkowski said. She credited the ALS community, "whose persistence helped us get this legislation across the finish line before the authorization expired."

The measure would keep the programs running through 2031. It also writes into law the Department of Health and Human Services' interpretation of who qualifies for the Expanded Access Program. That program serves people living with ALS who cannot join clinical trials. Its stated scope also covers research into other rare neurodegenerative diseases, not only ALS.

Reps. Mike Quigley of Illinois and Ken Calvert of California led the House companion, H.R. 8205, which passed with bipartisan support in July. The Senate passed its own version in August. According to Murkowski's office, the Senate version also required a new five-year FDA Action Plan. It also required a Government Accountability Office report on the program by 2030. The House text sent to the president includes an FDA action plan on rare neurodegenerative diseases, due 18 months after enactment.

Congress first enacted the ACT for ALS law in 2021. The law created the Expanded Access grant program. It also created a partnership between the FDA and the National Institutes of Health to speed ALS therapies, plus an FDA research grant program.

The programs received $90 million for fiscal year 2026. That is $15 million more than the year before, according to Murkowski's office.