ACT for ALS reauthorization bill awaits president’s signature

Advocates are cheering as legislation that would renew the Accelerating Access to Critical Therapies (ACT) for amyotrophic lateral sclerosis (ALS) has made its way to President Donald Trump’s desk as the law reaches its Oct. 1 expiration date.

ACT for ALS, signed into law in 2021 by President Joe Biden, is a federal law that supported research into ALS and helped people with ALS who cannot participate in clinical trials to gain access to promising experimental therapies. It also supported innovative clinical trial approaches, and strengthened the infrastructure needed to accelerate therapies for ALS and other rare neurodegenerative diseases.

Without reauthorization, those provisions would expire Oct. 1, putting at risk federal programs and research infrastructure established under ACT for ALS, as well as continued support for expanded access to investigational therapies.

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Legislation receives bipartisan support

ALS advocacy groups have been calling on Congress to pass legislation, called the ACT for ALS Reauthorization Act (H.R. 8205), that would extend the law through 2031. The legislation was passed by the House of Representatives earlier this summer. On Sept. 28, the Senate passed the same bill with broad bipartisan support, sending it to the president.

“We must accelerate research and technology to help make ALS livable and cure it. ACT for ALS invests in that research, and it gives some people who can’t join clinical trials a path to investigational therapies,” Calaneet Balas, president and CEO of the ALS Association, said in a press release from the organization. “Today, Democrats and Republicans came together to keep that progress going.”

Balas added: “To every advocate who walked into a congressional office and wouldn’t leave without a commitment: you did this. To the families who shared their hardest moments so other families might have more time: you did this. We’re grateful to our champions on both sides of the aisle who helped make this legislation possible. People living with ALS cannot wait, and neither will we.”

Sheri Strahl, president and CEO of the ALS Network, said in a press release that passage of this legislation through both chambers of Congress “is a major win for people living with ALS and their families, and a testament to what sustained, collective advocacy can accomplish.”

For people living with ALS, continued momentum matters.

The bipartisan effort was led by Reps. Mike Quigley (D-IL) and Ken Calvert (R-CA) in the House and Sens. Lisa Murkowski (R-AK) and Chris Coons (D-DE)  in the Senate.

“We are proud of the role we played alongside partners throughout the ALS community, and are deeply grateful to Representatives Calvert and Quigley, Senators Murkowski and Coons, and every advocate whose persistence helped carry this legislation across the finish line,” Strahl said.

The legislation now needs Trump’s signature to become law. With ACT for ALS set to expire Oct. 1, ALS advocacy groups had urged the president to sign the bill promptly before the program expires.

“Today’s Senate passage brings the ALS community one important step closer to securing the continued progress made possible by the ACT for ALS. We are grateful to the bipartisan members of Congress who have championed this legislation and urge the President to sign the bill into law before October 1,” Sharon Hesterlee, PhD, president and CEO of the Muscular Dystrophy Association, said in a press release.

“For people living with ALS, continued momentum matters,” Hesterlee added.