RARE Daily

Proposed Legislation Would Provide Federal Funding for Neurodegenerative Diseases

November 18, 2021

Rare Daily Staff

Members of the House and Senate reintroduced the Accelerating Access to Critical Therapies for ALS Act (ACT for ALS), legislation that would create the infrastructure necessary to fund early access to promising clinical trial therapies for patients suffering from fast-progressing rare neurodegenerative and terminal diseases.

Representative Mike Quigley (Illinois), Representative Jeff Fortenberry (Nebraska), Senator Chris Coons (Delaware), and Senator Lisa Murkowski (Alaska) introduced the legislation.

The legislation has 99 original co-sponsors in the House and is endorsed by I AM ALS, The ALS Association, and the Muscular Dystrophy Association.

“Not many things on Capitol Hill transcend partisan politics, yet the fight against ALS has become the most bipartisan project I’ve worked on throughout my time in Congress. And the ACT for ALS in particular has shown what is possible when we simply focus on solving an urgent problem, together,” said Quigley. “As a result of this legislation, we are closer than ever to disrupting the status quo to provide more than just hope to those suffering from ALS and other neurodegenerative diseases.”

ACT for ALS will authorize $100 million to implement the legislation. The Accelerating Access to Critical Therapies for ALS Act would also create a public-private partnership for rare neurodegenerative diseases at HHS to streamline the development and approval of new therapies and establishes a rare neurodegenerative grant program at FDA.

“Today’s reintroduction of the ACT for ALS is a significant step towards more and better innovative treatments not only for the ALS community, but also for the entire neuromuscular disease community more broadly,” said Paul Melmeyer, vice president, Public Policy and Advocacy, Muscular Dystrophy Association. “We are proud to endorse this bill, and in coordination with the ALS and neuromuscular disease patient communities, we call on Congress to pass this legislation as soon as possible.”

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