Murkowski Welcomes Advancement of ALS Research Treatments Legislation from Committee

Murkowski Welcomes Advancement of ALS Research Treatments Legislation from Committee

Washington, D.C. - Today, Senator Lisa Murkowski (R-AK), a member of the U.S. Senate Committee on Health, Education, Labor & Pensions (HELP), welcomed the advancement of her Accelerating Access to Critical Therapies for ALS Reauthorization Act (ACT for ALS Reauthorization Act) of 2026. The legislation, co-led by Chris Coons (D-DE) and approved unanimously by the committee, will help people living with ALS continue to access promising treatments while further advancing the scientific understanding of neurodegenerative diseases. The bill now heads to the Senate floor for consideration.

In the U.S. House of Representatives, companion legislation that passed unanimously out of the House Committee on Energy and Commerce last month is being led by Representatives Mike Quigley (D-IL) and Ken Calvert (R-CA).

The legislation will reauthorize ACT for ALS programs for five years, codify the Department of Health and Human Services' (HHS) interpretation of Expanded Access Program eligibility guidelines, require a new FDA five-year Action Plan, and require a new U.S. Government Accountability Office (GAO) report on the implementation of ACT for ALS programs in 2030.

Watch Senator Murkowski's remarks here.

The full transcript of her remarks can be found below.

TRANSCRIPT

Mr. Chairman, thank you for working with us to get this bill to this place. As you have noted, this is significant in terms of research into the therapies for ALS.

In 2021, we passed the Accelerating Access to Critical Therapies for ALS Act. This provides a pathway for people who are not eligible for clinical trials to receive investigational treatments, and it also provides funding to the NIH and FDA to accelerate research and data sharing to speed therapy development.

But basically, what we're talking about here is a process that allows individuals the right to try. As we know, an ALS diagnosis is effectively terminal; there is just a tragic course. And so, any opportunity, any ray of hope that can be found out there is what those who are living with ALS are hoping for.

The bill that we have before us is a reauthorization of this program. You noted the work that Senator Coons and I have been doing on this reauthorization. But I tell you, we have been working with some extraordinary advocates over the years, people like Dan Tate, Brian Wallach, Sandra Abrevaya, and Jenny Dwyer, as well as advocates who have also just recently passed away, like Eric Dane. Many of us have personal connections in this space.

In that vein, Mr. Chairman, I would like to introduce into the record a statement from Senator Coons, highlighting the successes of the program and acknowledging the work of so many advocates and those who have helped us get to this point. This is a program that works and needs to keep working as we move towards possible treatments and, hopefully, one day, a cure.

We have made a few improvements here, but we really want to get this passed and signed into law. I thank you, and all those on the committee, for the support.

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