Washington, D.C., December 16, 2021 –The Muscular Dystrophy Association released the following statement on tonight’s Senate passage of the ACT for ALS:
This evening, the Senate passed the Accelerating Access to Critical Therapies (ACT) for ALS Act (H.R.3537 and S.1813), sending the legislation to President Biden’s desk following last week’s passage in the House of Representatives. We call on President Biden to sign this legislation into law as soon as possible.
This moment would not be possible without thousands of patient advocates who have spent countless hours reaching out to their Congresspersons asking them to prioritize the ALS and rare neurodegenerative disease communities. Similarly, this bill would not have passed without the leadership of Senators Coons and Murkowski, Congressmen Quigley and Fortenberry, their staff, and leaders across Capitol Hill.
The ACT for ALS would meaningfully increase opportunities for individuals with ALS to access investigational therapies outside of the clinical trials in which they are unable to participate. The legislation creates a valuable new opportunity for the stakeholder community to collaborate with the Department of Health and Human Services (HHS), the National Institutes of Health (NIH), and the Food and Drug Administration (FDA), and commissions a plan from the FDA on regulatory innovations, all intended to speed creation of new rare neurodegenerative disease treatments. The bill will also create a new grants program to fund millions of dollars of research into needed therapeutic development in rare neurodegenerative diseases.
"We look forward to President Biden signing this legislation into law, and to ensuring the promise of this legislation becomes a reality," said Paul Melmeyer, Vice President of Public Policy & Advocacy for the Muscular Dystrophy Association.