Washington, D.C. – Legislation to improve ALS patients’ access to treatments is headed to the President’s desk to be signed into law. U.S. Senators Susan Collins and Angus King, members of the Senate ALS Caucus, co-sponsored the Accelerating Access to Critical Therapies (ACT) for ALS Act, which passed both chambers of Congress by overwhelming margins.
The bipartisan legislation will fund essential research into fast-progressing, rare neurodegenerative and terminal diseases, like amyotrophic lateral sclerosis (ALS), and promote early access to promising investigational therapies for patients. The bill will authorize $100 million annually to implement these priorities.
“ALS is a terrible, debilitating, and ultimately fatal disease that affects far too many Americans,” said Senators Collins and King in a joint statement. “This legislation will create a new grant program to research and improve access to investigational ALS treatments for patients not participating in clinical trials. We look forward to this bill being signed into law, which will bring promising new treatments to patients as quickly as possible.”
ALS affects 1 in 300 people, often leaving patients with no more than three years to live following their diagnosis, and disproportionately impacts U.S. military service members.
ACT for ALS authorizes new grants to support expanded access and research programs. This will help bring investigational treatments for rapidly progressing diseases beyond their ongoing clinical trials to patients with diseases for which effective therapies don’t already exist and allow for additional research into the effectiveness of those interventions. The legislation also creates a new Food and Drug Administration (FDA) Rare Neurodegenerative Disease Grant Program to support research and development on ALS and other life-threatening or severely debilitating neurodegenerative diseases.
The legislation was introduced by U.S. Senators Chris Coons (D-DE) and Lisa Murkowski (R-AK). The House companion bill was introduced by U.S. Representatives Mike Quigley (D-IL) and Jeff Fortenberry (R-NE).
Senators Collins and King co-sponsored the ALS Disability Insurance Access Act that was signed into law last December. The law eliminates the five-month waiting period before ALS patients can receive the Social Security Disability Insurance benefits they earned by contributing into Social Security.