Murkowski-Coons ALS Legislation Passes Senate
Washington, D.C. – U.S. Senators Lisa Murkowski (R-AK) and Chris Coons (D-DE), co-chairs of the Congressional ALS Caucus, this week secured Senate passage of their legislation, the Accelerating Access to Critical Therapies for ALS Reauthorization Act (ACT for ALS Reauthorization Act) of 2026. The bill will help people living with ALS continue to access promising treatments while advancing the scientific understanding of neurodegenerative diseases.
Companion legislation, led by Representatives Mike Quigley (D-IL) and Ken Calvert (R-CA), passed the U.S. House of Representatives last month. The next step is for the House and Senate to appoint conferees to negotiate the differences between the two bills.
The legislation would reauthorize ACT for ALS for five years, codify the Department of Health and Human Services' (HHS) interpretation of Expanded Access Program eligibility guidelines, require a new five-year FDA Action Plan, and direct the U.S. Government Accountability Office (GAO) to issue a report by 2030 on the implementation of ACT for ALS programs. This legislation is endorsed by I AM ALS, the Muscular Dystrophy Association, the ALS Association, and ALS United.
Senator Murkowski spoke about the impact of this legislation on the Senate floor.
Senator Murkowski’s full remarks can be found here.
Transcript:
Mr. President. We go through periods here in the United States Senate where there's frustrating issues that we deal with. Hours of unknown as to what's going to happen. Are we going to be able to make something happen? Are we making a difference? And some days can be particularly discouraging.
We've got a long way to go before this day is through. But to be here at the midpoint of this day and to be able to—as my colleague and my friend from Delaware has stated—to be able to celebrate an accomplishment is a reminder that we do good here. And we don't do good on our own. It takes teamwork, it takes cooperation, and collaboration; it takes advocacy. This is really what makes me just filled with a level of optimism and hope as we're talking about where we are at this moment for the ALS community.
The House passed the Accelerating Access to Critical Therapies for ALS Act—we call it ACT for ALS—they passed it a few weeks ago, and then the Senate was able to pass it in wrap-up. Yes, that means it passed by unanimous consent here yesterday. We're now in this final step: a final step of reauthorizing a program that is making a real difference for people living with ALS.
I think it's so important to just take a step back and say, what does that mean? Because we have not found the cure, unfortunately, for ALS. This legislation is not about this magical treatment that has come to be, but what we were able to do working together now five years ago when we passed the ACT for ALS Act—we created this pathway for individuals. It's kind of a roadmap. We said, if you're not eligible to participate in clinical trials to access investigational treatments, there's another way here for you.
We provided some pretty important funding to NIH and to FDA to accelerate the research, to improve the data sharing, to help speed up the development of new therapies. But what really comes about with the ACT for ALS is it gives people who are living with ALS the opportunity to try. Just "let me try something. It might not work, but let me try—because right now, the diagnosis that I'm living with offers no hope.”
So this is something that gives those living with ALS some hope. This is a program that works. We passed it five years ago, and what we have now done is a reauthorization that allows us to build on this progress that we've made to ensure that individuals living with ALS can continue to access these clinical trials and the programs that continue to meet the needs of the patients and the researchers.
Senator Coons has mentioned the advocacy—those caregivers, those who stand with and are wrapping their arms and their hearts around their loved ones who are dealing with ALS. This is about hope for them as much as those who are living with this dreaded disease.
My friend has acknowledged the name of those that he calls friends: Dan Tate was able to receive a text message on passage of the reauthorization here, saying, you know, "Go dudes" or something like that. I don't know that I'm a "dude," but I loved the enthusiasm that he had. Brian Wallach has been an extraordinary partner over the years; you mentioned Sandra Abrevaya, absolutely. And then my personal advocate, my cousin, Jenny Dwyer. It was through Jenny's husband Pat that our family learned of ALS, as Pat lived with ALS for eight years. As a family, we came to not only understand the disease and the awful progression, but it allowed us to understand some of what families live with—the almost daily heartbreak as you're watching your loved one progress through this diagnosis.
So, to the advocates: know that your work matters. Know that your stories matter. Know that you have made a difference. So, we're pleased to be able to be at this place where we can move to finally get this reauthorization into law, work things through the two bodies here, and get it signed.
There's more that we've got to do. We're working on some good things as the co-chairs of the ALS Caucus: the Justice for ALS Veterans Act, which is a really good one, and the ALS Better Care Act. Again, these address some of the challenges that face individuals with ALS as well as their families when they're trying to access care and benefits after a loved one has passed.
We know that for those that are living with ALS, every day matters. Every day is precious, and we cannot afford to lose momentum when promising therapies are being studied. I'm reminded—if not weekly, maybe daily—that people are waiting. People are waiting, and they're counting on us to show up for them.
So, to all those in the ALS community: thank you for your advocacy, thank you for your heart and your passion, your persistence, but also your willingness to open your hearts and to share your stories so that we can also become motivated and tenacious on your behalf.
I am very grateful for my friend from Delaware. It is hard as I hear stories of your dear friend, and as he goes through these stages of this disease. Know that even though I have not met Jack, he is in my heart as well, as well as the many, many who we are advocating for.
With that, I thank again not only Senator Coons, but all members here in the Senate that have joined us in this effort to end ALS.
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