ALS Research and Treatment: Extension of Grant Programs
This bill was recently introduced in the Senate and is currently being reviewed by the Committee on Health, Education, Labor, and Pensions. It is in the early stages of the legislative process and has no upcoming votes scheduled at this time. The bill is considered active as it waits for the committee to decide on its next steps.
This bill passed the Senate with broad support and reauthorizes a popular program that helps patients with terminal illnesses.
Scores run from -100 (strongly harmful) to +100 (strongly beneficial) for each group, combining impact, certainty, scope, and duration ratings of 1-5. How impact scoring works
ALS causes progressive paralysis, so most patients in this program live with significant physical disability. Continuing the expanded access grants and requiring companies to share safety data means these patients can keep pursuing experimental therapies while the government tracks whether the drugs are safe for people with advanced physical impairments.
“an assurance that such entity will promptly report to the Secretary available safety data from any ongoing clinical trial of the investigational drug as set forth in the terms and conditions of the grant”
Passed Senate with an amendment by Voice Vote.
The Senate voted to approve this bill. If the House already passed it, it goes to the President.
Passed/agreed to in Senate: Passed Senate with an amendment by Voice Vote.
The Senate voted to approve this bill. If the House already passed it, it goes to the President.
Placed on Senate Legislative Calendar under General Orders. Calendar No. 461.
The bill is now on the schedule for the full chamber to consider. It's in line for debate and a vote.
Committee on Health, Education, Labor, and Pensions. Reported by Senator Cassidy with an amendment in the nature of a substitute. Without written report.
The committee approved this bill and is sending it to the full chamber for a vote. This is a significant step — most bills never get this far.
Committee on Health, Education, Labor, and Pensions. Ordered to be reported with an amendment in the nature of a substitute favorably.
The committee approved this bill and is sending it to the full chamber for a vote. This is a significant step — most bills never get this far.
The U.S. House of Representatives has passed legislation to renew the ACT for ALS, a landmark law supporting research and experimental therapy access. The ACT for ALS Reauthorization Act (H.R. 8205) extends programs through 2031 and adds requirements for clinical trial accountability.
Rep. Morgan Griffith discusses the ACT for ALS Reauthorization Act of 2026, noting it directs millions to research for ALS and neurodegenerative diseases. He emphasizes the bill's role in helping the health care system keep pace with science through innovation and expanded patient access.
Andrea Goodman, CEO of I AM ALS, argues for the urgent passage of the ACT for ALS Reauthorization Act. She notes the law has authorized $100 million annually to accelerate drug development and expand access to experimental therapies, warning that progress is at risk if the law expires.
No votes recorded for this bill yet.
Document Type
Congressional Bill
Official Title
Accelerating Access to Critical Therapies for ALS Reauthorization Act of 2026
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