People living with ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig's disease) and the researchers working on treatments would continue to benefit from federal grant funding and expanded therapy access programs through fiscal year 2031 under this bill, extending a law that was set to expire in 2026. It requires companies seeking renewed research grants to share enrollment, safety, and effectiveness data about experimental ALS drugs with the government reviewers deciding whether to continue funding. Grant recipients running late-stage clinical trials would also have to promptly report any serious, unexpected safety problems to the agency funding their grant, on top of existing FDA safety-reporting rules. The bill directs the FDA to publish a public action plan within 18 months describing its next five years of work on rare neurodegenerative diseases, followed by a public report five years later on what it actually accomplished. These steps are aimed at speeding the development of new ALS treatments while keeping closer track of drug safety and FDA progress.
Average Household Impact
- ALS Act funding authorization — Extended through fiscal year 2031 for research grants and expanded-access programs
Transparency & Accountability
- FDA public reporting requirement — Commissioner must publish a rare-neurodegenerative-disease action plan within 18 months and a progress report after 5 years
- Grant-safety reporting requirement — ALS research grant recipients must promptly report serious unexpected safety problems from late-stage trials
Congressional Summary
Accelerating Access to Critical Therapies for ALS Reauthorization Act of 2026This bill reauthorizes through FY2031 and revises programs that support research and development of drugs and other therapies to address amyotrophic lateral sclerosis (also known as ALS or Lou Gehrig's disease) and other neurodegenerative diseases.The bill reauthorizesgrants from the National Institutes of Health (NIH) for scientific research on investigational drugs to prevent or treat ALS for individuals not otherwise eligible for clinical trials,grants from the Food and Drug Administration (FDA) for research and development of therapies to prevent and treat ALS and other neurodegenerative diseases, anda Public-Private Partnership including the FDA and NIH that supports development and regulatory review of treatments for neurodegenerative diseases. Also, the NIH, in considering renewal of its grants, must assess available information on the safety and efficacy of the investigational drugs. It must also require grantees to promptly report serious and unexpected adverse events associated with their investigational drugs.Additionally, the FDA must publish a plan describing actions it will take over a five-year period to foster development of safe and effective drugs, and facilitate access to investigational drugs, that treat ALS and other rare neurodegenerative diseases. The FDA must also publish a report describing the actions it has taken under the plan.
Details
- Congress
- 119th
- Chamber
- House
- Status
- summarized
- Action
- Reported to House
- Action Date
- 2026-07-09
- Date Added
- 2026-07-17
- Source
- Congress.gov →
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