ALS United urges Congress to finish ACT for ALS reauthorization before recess

ALS United is pressing congressional leaders to reconcile House and Senate versions of the ACT for ALS Reauthorization and send a final bill to the president before the House leaves for fall recess. The organization says any delay could threaten expanded access programs and research infrastructure for people living with ALS.

Why it matters: - ACT for ALS programs face expiration without reauthorization. - The law supports expanded access to investigational treatments for people with ALS who have few other options. - The programs also fund research tools and data systems that help speed ALS research and improve coordination across scientists, clinicians, federal agencies and industry. - ALS affects more than 35,000 Americans and remains a rapidly progressive, fatal neurodegenerative disease with limited treatment options.

What happened: - ALS United called on congressional leaders to resolve differences between the House- and Senate-passed ACT for ALS Reauthorization and send final legislation to the president before the House leaves for fall recess at the end of the week. - The House passed H.R. 8205 on July 22, led by Reps. Mike Quigley, D-Ill., and Ken Calvert, R-Calif. - The Senate passed S. 4472 the week of Aug. 3, led by Sens. Lisa Murkowski, R-Alaska, and Chris Coons, D-Del. - ALS United said Congress must complete the work now because people living with ALS cannot wait months for a final bill.

The details: - Both chambers approved their own versions over the summer, but Congress still has to reconcile remaining differences. - Jerry Dawson, ALS United president and CEO, said the bills are not far apart and can be reconciled in a way that works for people living with ALS, researchers and others involved in the effort. - Dawson said every week of delay means time people with ALS do not get back. - ALS United said supporters should contact their members of Congress this week and press for completion before the recess begins.

Between the lines: - The push reflects urgency around a program that is tied not just to access, but also to the infrastructure behind ALS research. - The reauthorization fight is less about whether to continue ACT for ALS and more about how quickly Congress can close the gap between two already-passed bills. - The timing matters because the House recess could create a delay that extends uncertainty for patients, researchers and program partners.

What's next: - Congressional leaders need to negotiate a final compromise and pass a unified bill. - If Congress acts before recess, the legislation can move to the president's desk. - If Congress misses the deadline, the future of the program and its support systems could remain uncertain.