Landmark ACT for ALS Act on President’s Desk

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by Mary Chapman |

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If signed by President Joe Biden, the bipartisan Accelerating Access to Critical Therapies (ACT) for ALS Act will fund crucial research into fast-progressing neurodegenerative disorders such as amyotrophic lateral sclerosis (ALS) and provide patients with early access to promising treatment candidates.

The legislation (HR 3537), which has passed the U.S. House and most recently the Senate, also would create a U.S. Food and Drug Administration (FDA) Rare Neurodegenerative Disease Grant Program to support other research and development in the field of ALS and other severely debilitating neurodegenerative diseases.

The ACT for ALS Act, which will make available $100 million annually from 2022 to 2026, was introduced by senators Chris Coons (D-Delaware) and Lisa Murkowski (R-Alaska), and representatives Mike Quigley (D-Illinois) and Jeff Fortenberry (R-Nebraska).

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“Because of the tireless work of so many ALS advocates, the Senate unanimously passed the Act for ALS Act and sent it to President Biden’s desk,” Coons said in a press release. “Thanks to this legislation and the crucial research into ALS it will fund, countless Americans and their families who face down this cruel disease every day can go to sleep tonight with a renewed sense of hope. I am grateful to senator Murkowski and representatives Quigley and Fortenberry for their partnership on this landmark bill.”

ALS is progressive neurological disorder that damages nerve cells and causes disability. It is thought to affect one in 300 individuals. There is no cure, although treatments are available to help manage the condition.

The bill aims to advance ALS research by creating a new grant program that supports the development of investigational treatments, while making them available to patients who cannot participate in their clinical trials and to establish a public-private partnership for rare neurodegenerative diseases that advances understanding of disease mechanisms and fosters development and evaluation of treatments.

Additional components of the bill include the creation of an FDA action plan to support promising therapies that improve and extend the lives of patients and facilitate access for those living with ALS and other rare neurodegenerative conditions, and to implement an FDA grant program to fund research and treatment development in these diseases.

“This is all about hope. The ACT for ALS Act will make a meaningful difference for individuals and families across the country. Passage of this bill today is a hard-earned win for the ALS community and provides much-deserved hope to all who are affected by this disease,” said Murkowski.

“As someone whose family has been impacted by ALS, I know how terrible this disease is and how tirelessly the ALS community continues to fight for legislation to improve treatments and quality of life and search for a cure,” added Murkowski. “This bill now heading to the president’s desk is [a] huge step forward. It will offer new hope for those who are most in need, those who today — tragically — have very few options for treatment.”

Brian Wallach, ALS patient and co-founder of the organization I AM ALS, said he is celebrating the news regarding the legislation’s passage.

“For 160 years, there has been no hope for those diagnosed with ALS. That changed tonight. Tonight, as a result of tens of thousands of ALS advocates working nonstop to make their voices heard and demanding the chance to live, hope has finally come to people living with ALS,” he said after the bill was approved Dec. 16.

“This moment was supposed to be impossible. The ALS community, however, refused to give up. So today we celebrate the impossible becoming real and a new chapter for the fight against ALS,” added Wallach.

Calaneet Balas, president and CEO of the ALS Association, said that the “ACT for ALS will directly impact the lives of people with ALS by providing expanded access to investigational drugs and funding new research at FDA to find treatments and cures that are urgently needed.”

Paul Melmeyer, vice president of public policy and advocacy at the Muscular Dystrophy Association, also hailed passage of the measure by both legislative chambers.

“With tonight’s vote, this legislation, which could substantially increase access to promising therapies and advance drug development in rare neurodegenerative diseases, needs only President Biden’s signature to make this a reality.”