A program that lets people with ALS try experimental treatments just got five more years

For people dying of ALS who can't get into a clinical trial, there's another door: a federal program that lets them try investigational treatments anyway. That program was set to expire Sept. 30 — and this week the U.S. Senate voted to keep it running for five more years.

ALS, or amyotrophic lateral sclerosis, is a fatal neurodegenerative disease with no cure, and for many patients time runs out faster than the slow machinery of drug trials. The program, first created in 2021 as the ACT for ALS, opens access to experimental treatments outside those trials and funds research at the National Institutes of Health and the FDA. Sen. Lisa Murkowski, who co-chairs the Congressional ALS Caucus, led the reauthorization.

"We said, if you're not eligible to participate in clinical trials to access investigational treatments, there's another way here for you," Murkowski said on the Senate floor. "But what really comes about with the ACT for ALS is it gives people who are living with ALS the opportunity to try."

She credited advocates Dan Tate, Brian Wallach and Sandra Abrevaya, along with her cousin Jenny Dwyer, for years of work pushing it forward. The disease advocacy group ALS United, which had pressed for the renewal, warned that letting the law lapse would put that progress at risk.

A companion bill has already passed the U.S. House, and the two chambers still have to reconcile their versions before it reaches the president. Murkowski said the ALS Caucus is also working on measures addressing the care and benefits patients and their families struggle to access — including after a loved one has died.