Quigley, Fortenberry Legislation to Find Treatments for ALS Passes House

Today, the Accelerating Access to Critical Therapies for ALS Act (ACT for ALS) – legislation led by U.S. Representatives Mike Quigley (IL-05) and Jeff Fortenberry (NE-01) – passed the House of Representatives with overwhelming bipartisan support. ACT for ALS would help people living with ALS get early access to promising treatments and help researchers gain a better understanding of neurodegenerative diseases.

"Today, I proudly cast my vote for the ACT for ALS. I did this on behalf of every American who has ever been touched by ALS and for every advocate who has tirelessly fought to expand treatment. It has been my honor to help lead this legislation in the House, so that people living with ALS can access promising treatments and put us closer to one day finding a cure. I look forward to working with my colleagues in the Senate to get this bill over the finish line and on the President's desk," said Quigley. "While an ALS diagnosis has long been considered a death sentence, in this moment we can all join my friend Brian Wallach, who likes to say, ‘Not today, ALS.' No, definitely not today."

"Today, the U.S. House of Representatives did something truly miraculous: it gave real hope to those suffering from the cruel, merciless disease of ALS. For over 50 years and over 50 clinical trials, ALS patients have submitted themselves to tests and trials, therapies and placebos, in accordance with the rules of the current health care policy framework. But progress has been uneven, even debatable, with serious impediments to promising new treatments. Many ALS patients have sacrificed their lives to science, as they gradually weakened and died. Today, with over 330 cosponsors, we advanced a new way," Fortenberry said.

"ACT for ALS represents a monumental shift for those suffering from ALS and other neurodegenerative conditions. The bill does two main things: it transforms the paradigm of disease research and regulation and creates a new pathway to promising new treatments. It drives the hope. With this transformative piece of public policy, we can break through faster for those who have suffered so much," Fortenberry added.

The legislation passed with bipartisan support from 423 Members of Congress and now heads to the Senate for consideration, where it is led by Senator Chris Coons (D-DE), co-chair of the Senate ALS Caucus, and Senator Lisa Murkowski (R-AK).

"I'm excited to see our colleagues in the House pass this necessary legislation at the same time that we reach a critical milestone of support in the Senate," saidSenator Coons. "ACT for ALS will create critical new programs to improve coordination and collaboration on ALS, support additional research, and help more patients access promising investigational therapies."

"Today's passage of ACT for ALS by the House of Representatives is historic. Today's passage is historic because it is the result of an unprecedented grassroots advocacy campaign by the ALS community, including many people living with ALS and fighting to end this 100% fatal disease. Today's passage is historic because this bill will reshape ALS research and more importantly provide access to promising ALS treatments for people living with ALS who have been left to die for far too long. Today's passage is historic because of the overwhelming bipartisan support for this bill, starting with the leadership of Reps. Mike Quigley and Jeff Fortenberry," I AM ALS Co-Founder Brian Wallach said. "Now, Senate, pass ACT for ALS so it can become law and make hope real for people living with ALS now."

"The ALS community urgently needs new therapies to be developed, approved and made accessible to people with ALS," said Calaneet Balas, President and CEO of The ALS Association. "While we pursue new treatments and cures for ALS, we need to make it livable. To do that we must dramatically expand the number of clinical trials for ALS drugs while at the same time support expanded access to promising new investigational drugs outside of clinical trials. The ACT for ALS Act achieves this balance in purpose and funding. We thank Representative Quigley and all House sponsors, and urge swift passage in the Senate."

"Today's passage of the ACT for ALS in the House of Representatives is a monumental step forward for ALS and rare neurodegenerative disease research and access to promising therapies", said Paul Melmeyer, Muscular Dystrophy Association's VP of Public Policy and Advocacy. "MDA is grateful for Congressmen Quigley and Fortenberry's unwavering support, House leaders who prioritized passing this bill, and the patient advocates who spent countless hours pushing for this legislation."

Earlier today, Quigley spoke on the floor in support of ACT for ALS. Video of his remarks is available HERE and his remarks as prepared for delivery are below:

Madam Speaker, I rise today because everything is impossible. Until it isn't.

And nothing has a cure—until it does.

Madam Speaker, I rise today to urge my colleagues to support the ACT for ALS.

Today, people diagnosed with ALS are expected to live only two to five years.

During that time, they progressively lose the ability to use their limbs, to speak, to swallow, and ultimately to breathe.

Being diagnosed with ALS is a death sentence —For now.

After my friend Brian Wallach was diagnosed with ALS an odds-defying four years ago, he made ending the disease the fight of his life. "Not today, ALS," he frequently says. Not today.

Madam Speaker, ALS is NOT incurable. It's just that we have not fully committed to finding a cure yet.

Not like my friend Brian has.

And not like Brian's wife Sandra has, or like the organization they founded, I AM ALS has.

ACT for ALS will give people living with ALS access to promising treatments and improve the research infrastructure we need to one day find a cure.

Cruelly, up to 90 percent of people living with ALS are ineligible for clinical trials.

For people with such an aggressive disease to have neither an effective FDA-approved treatment nor access to promising drugs is a tragedy.

ACT for ALS will help correct this.

I'd like to thank my 331 colleagues who have cosponsored this bill, Chair Pallone, Subcommittee Chair Eshoo, and their staffs for standing with the ALS community.

I also want to extend a thank you to Congressman Fortenberry, my co-lead on this bill, who has pursued our shared goal with relentless dedication—and to my staffers Allison Jarus and David Steury, who have gone above and beyond in pursuit of this legislation.

To every member who has not yet cosponsored this bill: you can still be a hero to people living with ALS by voting in favor of ACT for ALS today.

Madam Speaker, passing this bill is not a Congressional achievement.

It is the achievement of a community of advocates all around the country who are fighting for their own lives, the lives of their loved ones, and the lives of everyone who is affected by ALS.

In addition to Brian and I AM ALS, I want to thank the Muscular Dystrophy Association and the ALS Association for their dedication to passing this bill. And every advocate – of whom there are far too many to name – who has worked toward this achievement.

ALS may rob people of their physical ability to speak. But make no mistake, this community has made themselves heard.

It is their will that has brought us to today's vote. And where there's a will – there's a way.

Where there's consensus – there can be progress.

Where there is funding – a cure will follow.

Today belongs to the tireless advocates, to the families of people with ALS, and to every American living with the disease.

Thank you, I urge a yes vote on ACT for ALS, and I yield back.