Federal ACT for ALS legislation reauthorized through 2031
President signs law supporting disease research, patient access to therapies
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- The federal ACT for ALS legislation has been reauthorized through 2031.
- The program is aimed at supporting ALS research and helping patients access promising experimental therapies.
- The ALS Association cheered the renewal of the law as a "significant victory for the ALS community."
President Donald Trump has signed into law legislation to renew the Accelerating Access to Critical Therapies (ACT) for amyotrophic lateral sclerosis (ALS), a federal program aimed at supporting ALS research and helping patients access promising experimental therapies.
The original ACT for ALS was signed into law in 2021 by President Joe Biden, but without reauthorization, it expired at the start of October. A bill to extend it was passed by both chambers of legislature with broad bipartisan support, and with the president’s signature, ACT for ALS is now officially extended through 2031.
Passage of the legislation, called the ACT for ALS Reauthorization Act (H.R. 8205), is being met with enthusiasm from advocates. In a press release, the ALS Association cheered the renewal of the law as a “significant victory for the ALS community.”
“We must accelerate research and technology to help make ALS livable and cure it. 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,” said Calaneet Balas, president and CEO of the ALS Association. “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.”
‘Law preserves the momentum that is driving scientific breakthroughs’
ALS is a rare neurological disease in which motor neurons, the nerve cells that control movement, sicken and die, leading to progressive muscle weakness. There is no cure for ALS, and although a few therapies are available to slow disease progression, most people will die from complications of the disease within a few years of onset.
In 2021, lawmakers passed the original ACT for ALS in recognition of the critical need for new options to help people affected by this disease, and since its passage, the law has helped accelerate research into new treatments.
This law preserves the momentum that is driving scientific breakthroughs, expands opportunities for people to participate in research and access promising therapies, and strengthens the partnerships that will lead to the next generation of treatments.
In particular, this federal law has strengthened the infrastructure needed to accelerate therapies for ALS and other rare neurodegenerative diseases. It also supported innovative clinical trial approaches, and helped people with ALS who cannot participate in clinical trials to gain access to promising experimental therapies.
“This law preserves the momentum that is driving scientific breakthroughs, expands opportunities for people to participate in research and access promising therapies, and strengthens the partnerships that will lead to the next generation of treatments. Together, we are creating a future where ALS is no longer a fatal diagnosis but a disease that can be effectively treated and ultimately cured,” Sharon Hesterlee, PhD, president and CEO of the Muscular Dystrophy Association, said in a separate press release.
Hesterlee added: “Today’s signing is a defining moment for the ALS community and for everyone working toward a future without this devastating disease. The Muscular Dystrophy Association was proud to help lead the effort to reauthorize the ACT for ALS because we know that every day matters for people living with ALS.”
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