GREAT NEWS! House Subcommittee Unanimously Approves ACT for ALS


Accelerating Access to Critical Therapies (ACT) for ALS (H.R. 3537) was approved by a unanimous vote on Thursday, November 4 in the House Energy and Commerce Subcommittee on Health. Thanks to everyone within the ALS community who has advocated for passage and who has worked on Capitol Hill to help make this important step happen. The strong bipartisan support for this bill means smooth sailing as the bill goes to the full House Energy and Commerce Committee and then the full House for approval.

The bill, championed by Rep. Mike Quigley (D-Ill.), was co-sponsored by 326 Representatives, and authorizes funding of $100 million each year (FY2022-FY2026). Funding would have to be appropriated by Congress on an annual basis.

The ALS Association, I AM ALS and MDA issued a joint statement prior to the hearing. In addition, the Association also submitted its own statement for the hearing.

The Senate bill, championed by Senators Chris Coons (D-DE) and Lisa Murkowski (R-AK), has a total of 40 cosponsors. It is expected that the bill will be considered by the Senate Health, Education, Labor and Pensions Committee in the near future.

The two most important sections of the bill establish two new grant programs to fund an expanded access in certain circumstances for individuals not otherwise eligible for ALS clinical trials and to fund an FDA research program to find treatments and a cure for ALS and similar diseases.

Section 2. Grants For Research On Therapies For ALS creates a new expanded access program. Funds would be awarded to entities for investigational drugs for individuals who are not otherwise eligible for ALS clinical trials. The application must describe how the proposed expanded access program will not interfere with patient enrollment in ongoing clinical trials for investigational therapies.

Section 5. FDA Rare Neurodegenerative Disease Grant Program establishes a program at FDA that will award grants and contracts to public and private entities to cover the costs of research on, and development of interventions intended to prevent, diagnose, mitigate, treat, or cure, amyotrophic lateral sclerosis and other rare neurodegenerative diseases in adults and children.

One important addition to the bill is the requirement for a Government Accounting Office (GAO) report on both the new expanded access program and the FDA research program. The report must be submitted within four years to both the House Energy and Commerce Committee and the Senate Health, Education, Labor and Pensions Committee.

Another important part of the bill requires FDA to publish, no later than 6 months after the bill passes, an ALS and Other Rare Neurodegenerative Disease Action Plan. The plan must outline the steps FDA will take to foster the development of drugs to improve or extend the lives of people living with ALS and other rare neurodegenerative diseases. Lastly the bill establishes a Public-Private Partnership for Neurodegenerative Diseases which will bring together NIH, FDA and other entities to advance the development of treatments and cures for ALS.

Help us continue to drive support for this critical legislation. Ask your senators to champion people living with ALS by cosponsoring the ACT for ALS Act. 


Submitted by: Maria Clara S. on Thu, 11/04/2021

O mundo torce pelo sucesso de vocês. Cada avanço alcançado é um raio de esperança para quem vive com o diagnóstico de ALS/ELA.

Submitted by: Rebecca P. on Fri, 11/05/2021

Thank you for sponsoring this bill Sen. Chris Coons. Please get this passed!!

Submitted by: Robert K. on Thu, 12/02/2021

I am elated. Thank you, thank you and thank you again. Please include Platform Trial investigational drug theraputics among your sponsored programs.

Submitted by: Brian A. on Thu, 12/02/2021

Please pass this bill

Submitted by: Rachel M. on Fri, 12/03/2021

Please pass this bill..My son has had ALS for more than 10 years now.. beginning shortly after graduating from college..It has totally derailed his entire life.

Submitted by: Darlene G. on Thu, 06/16/2022

Please find a cure for this desease. I was diagnosed April 2022 and I am so scared for my family and me. I would try anything that could help. I have nothing to lose. Respectfully
Darlene Green ?

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