Higgins announces approval of Accelerating Access to Critical Therapies for ALS Act

Bill provides $100M in annual funding toward ALS research & treatment

Congressman Brian Higgins announced the approval of the Accelerating Access to Critical Therapies for ALS Act (H.R. 3537). Introduced by Rep. Mike Quigley (D-Ill) and cosponsored by Higgins, the bill provides funding for several initiatives aimed at advancing therapies for ALS and other rare neurodegenerative diseases.

“Currently, patients battling ALS, on average, are expected to live just two to five years once diagnosed. Without a cure, time and treatment options are limited for patients and their families,” Higgins said. “This legislation not only provides a federal investment in a comprehensive plan to make ALS research and treatments more accessible, it provides hope for families and patients battling ALS that we are closer to finding a cure.”

According to the CDC, amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a progressive and fatal disease affecting more than 12,000 people across the U.S. This legislation provides $100 million annually to the Department of Health and Human Services through 2026. The funding allows HHS to award grants, establish a public-private partnership, and create an action plan for drug approvals to treat diseases like ALS.

HHS will award scientific research grants that help ALS patients gain access to investigational drugs that diagnose and treat the disease. The Food and Drug Administration will award grants to both public and private groups that will cover costs for the research and development drugs treating neurodegenerative diseases.

The bill also directs HHS to establish the Public Private Partnership for Neurodegenerative Diseases with the National Institutes of Health, FDA, institutions of higher education, and nonprofit organizations with biomedical expertise. The partnership will focus on advancing regulatory and scientific efforts to develop and review drugs for patients with ALS and other rare neurodegenerative diseases. Additionally, the FDA will create a five-year action plan to develop safe and effective drugs and facilitate access to investigational drugs for ALS and similar diseases. 

Higgins announced his support for the legislation in July. The bill is also supported by the ALS Association, I AM ALS, and the Muscular Dystrophy Association.