House Passes Bill to Renew Federal Law for ALS Research and Care

House passes bill to renew federal law for ALS research and care

The U.S. House of Representatives has passed legislation that would renew the ACT for ALS, a landmark federal law that supports ALS research and helps people with the disease access promising experimental therapies.

The ACT for ALS Reauthorization Act (H.R. 8205) will now move to the Senate, and the Muscular Dystrophy Association (MDA) is inviting advocates to urge lawmakers to pass it before the current law expires on Oct. 1.

2021 law provided $100 million in annual federal funds

The original ACT for ALS, or the Accelerating Access to Critical Therapies for ALS Act, was first signed into law in 2021 and established new federal programs to accelerate the development of new ALS therapies. It also expanded “compassionate use” access to investigational treatments for people who cannot participate in clinical trials. The 2021 law provided $100 million in annual federal funds, and since its passing, about 750 people with ALS have received promising experimental therapies through the National Institutes of Health ALS Expanded Access program.

The funds have also equipped clinics nationwide to participate in ALS research and created public-private partnerships that have already advanced the understanding of ALS and supported the development of new treatment approaches.

With the law set to legally expire on Oct. 1, lawmakers and advocates have been working to quickly reauthorize the law and preserve programs that have become central to ALS research and treatment development. Introduced by a coalition led by Reps. Mike Quigley (D-IL) and Ken Calvert (R-CA), the bill now aims to extend funding through 2031.

According to the MDA, reauthorizing the law would ensure continued access to promising experimental therapies, support important ALS research, encourage innovative clinical trial approaches, and strengthen the infrastructure needed to accelerate the development of therapies for ALS and other rare neurodegenerative diseases. The legislation also builds on the original law by requiring stricter accountability for clinical trials and greater regulatory transparency.