Advocates push for swift passage of ACT for ALS reauthorization bill
Bipartisan lawmakers race to prevent funding cliff for critical research and care
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- Advocates urge reauthorization of the ACT for ALS bill to fund research and expand access to treatment.
- Current funding expires in September, and the new bill extends support through 2031.
- Swift passage is crucial to prevent a "funding cliff" for vital ALS programs.
Advocates and lawmakers are racing against a looming September deadline to prevent a “funding cliff” for critical amyotrophic lateral sclerosis (ALS) research and treatment access.
The ALS Association is now throwing its full weight behind the newly reintroduced ACT for ALS Reauthorization Act (H.R. 8205), a bipartisan push to ensure that life-extending programs for people with ALS don’t expire this year.
The original ACT for ALS, or the Accelerating Access to Critical Therapies for ALS Act, was a landmark 2021 law designed to fast-track new therapies and expand “compassionate use” access for patients who don’t qualify for clinical trials. By fostering coordination between public and private researchers, the program has become a cornerstone of the modern fight against the disease.
While the 2021 law provided $100 million in annual federal funds, that support is set to legally expire on Sept. 30. This week, a bipartisan coalition led by Reps. Mike Quigley (D-IL) and Ken Calvert (R-CA) introduced the reauthorization bill, which would not only extend funding through 2031 but also mandate stricter accountability for clinical trials and greater regulatory transparency.
A strengthened path for patient care
A team including many of the same legislators had introduced a similar bill in 2023, but that version failed to advance beyond committee. With the expiration date now months away, the ALS Association is urging Congress to treat the reauthorization with the same urgency as the disease itself.
“ACT for ALS has already changed what’s possible for people living with ALS — and our volunteers and staff fought to make this reauthorization even stronger. More accountability. Fewer barriers. Faster pathways to get promising treatments to the people who need them,” Calaneet Balas, president and CEO of the ALS Association, said in a press release. “This bill reflects what our advocates demanded and what people living with ALS deserve: a commitment from the federal government that matches the urgency of this disease.”
The push for renewed funding comes as the community sees recent breakthroughs in ALS treatments. A key example is the 2023 conditional approval of Qalsody (tofersen) for patients with SOD1 gene mutations.
Available data suggest Qalsody may help not only slow disease progression but also restore some lost function. However, because SOD1 mutations affect about 2% of the ALS population, advocates argue that the ACT for ALS framework is vital to discovering similar breakthroughs for the remaining 98% of patients.
To help bridge the gap while the bill moves through the House Committee on Energy and Commerce, the ALS Association has committed $39 million to support more than 100 active research grants. The organization has also launched its Accelerate the Cure campaign to raise an additional $1 million.
