Lawmakers push for rapid implementation of historic ALS research law

January 24, 2022

Sens. Coons, Murkowski; Reps. Quigley, Fortenberry call on HHS, FDA, and NIH to use currently proposed funding to swiftly implement revolutionary bill President Biden signed into law last month

 WASHINGTON – Last week, U.S. Senators Chris Coons (D-Del.), the co-chair of the ALS Caucus, and Lisa Murkowski (R-Alaska), a member of the Senate ALS Caucus, along with U.S. Representatives Mike Quigley (D-Ill.) and Jeff Fortenberry (R-Neb.), called on the administration to rapidly implement their ACT for ALS Act, historic legislation that President Biden signed into law on December 23.

The law authorized new grant programs and partnerships that will deepen research into amyotrophic lateral sclerosis (ALS); facilitate better collaboration between public, industry, and academic partners; and provide broader access to promising therapy candidates in ongoing clinical trials. The lawmakers, who introduced and championed the bill, called for several agencies — including the Department of Health and Human Services (HHS), the Food and Drug Administration (FDA), and National Institutes of Health (NIH) — to fund the law’s fast implementation using resources in the proposed fiscal year 2022 appropriations bills released by both chambers’ appropriations committees.

“The passage of this momentous legislation represents not just a path forward for finding effective treatments and cures for ALS, but also hope for people living with ALS and their families. It is critical to move quickly to fully implement the Act to transform ALS innovation and accelerate progress toward a cure for people living with ALS and other rare neurodegenerative diseases,” the lawmakers wrote in a letter. “Enhancing access to promising therapies now while strengthening and accelerating research into ALS puts us on a fast track to truly effective treatments and, one day, a cure.”

The lawmakers stated, “As you know, the authorization period for ACT for ALS runs from fiscal year (FY) 2022 through FY 2026. As members of the Appropriations Committees in our respective chambers, we urge HHS to immediately implement the law. Congress has demonstrated a strong and consistent commitment to the research infrastructure within HHS and we intend to continue our record of supporting that invaluable work, including the new requirements authorized by ACT for ALS.”