House passes bill to renew federal law for ALS research and care
Senate will now consider reauthorization of ACT for ALS through 2031
Written by |
- The U.S. House passed a bill to renew the ACT for ALS.
- This law funds ALS research and access to experimental therapies.
- The bill now awaits Senate approval ahead of its Oct. 1 expiration.
The U.S. House of Representatives has passed legislation that would renew the ACT for ALS, a landmark federal law that supports amyotrophic lateral sclerosis (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.
“House passage of the ACT for ALS Reauthorization Act shows that the House of Representatives stands with the ALS and rare neurodegenerative disease communities in striving for better treatments and care,” said Sharon Hesterlee, PhD, president and CEO of the MDA, said in a statement.
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.
We are grateful to the bipartisan champions, advocates, caregivers, and families who shared their stories and raised their voices to advance this legislation.
With the law set to legally expire on Oct. 1, lawmakers and advocates have been working tirelessly 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.
“We are grateful to our champions Congressmen Quigley and Calvert, Congressmen Guthrie and Pallone for bringing the bill to the House floor, and every member of Congress who voted … for a brighter future for our community. MDA will not rest until this bill becomes law,” Hesterlee said.
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 organization said these efforts would help ease the emotional, physical, and financial burdens faced by people living with ALS and their families, while advancing the search for better treatments and, ultimately, a cure.
The legislation also builds on the original law by requiring stricter accountability for clinical trials and greater regulatory transparency.
“We are grateful to the bipartisan champions, advocates, caregivers, and families who shared their stories and raised their voices to advance this legislation,” the MDA said in its statement.
Leave a comment
Fill in the required fields to post. Your email address will not be published.