Stronger ACT for ALS Act Would Foster New Treatments, ALS Association Says

Stronger ACT for ALS Act Would Foster New Treatments, ALS Association Says
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After working for months behind the scenes, the ALS Association is calling a strengthened Accelerating Access to Critical Therapies for ALS Act (ACT) a key step toward swifter development of new therapies.

The revised bill (HR 8662/S. 4867) calls for $100 million over five years for amyotrophic lateral sclerosis (ALS) research and establishment of the first federal body specifically charged with coming up with treatments for neurodegenerative diseases.

ACT for ALS was reintroduced Oct. 29 in the U.S. House of Representatives by Jeff Fortenberry (R-Nebraska) and Mike Quigley (D-Illinois), and in the Senate by Chris Coons (D-Delaware) and Lisa Murkowski (R-Alaska).

“Together, these revisions will ensure the ACT for ALS Act will benefit the entire ALS community and bring promising treatments to people with ALS,” the ALS Association stated in a press release. “We look forward to working with congressional champions, committees of jurisdiction, and the ALS community as the bill is refined throughout the legislative process to ensure the bill becomes law as soon as possible.”

The organization worked with ALS community stakeholders to incorporate its recommendations into the bill, which would create a new framework specifically for getting potential new treatments to patients. It also would create a new U.S. Food and Drug Administration (FDA) research grant program for rare neurodegenerative disorders.

A Collaborative for Rare Neurodegenerative Diseases would be established at the U.S. Department of Health and Human Services (HHS) to coordinate federal efforts to develop and approve new therapies and cures.

The $100 million in funding, which must be appropriated by Congress, would be allocated among the three programs.

The HHS collaborative would advise on program grants, and establish an advisory panel including patients who would review the three programs’ designs and implementation. The panel also would report its findings to Congress.

In addition, the entity would produce and make public an action plan outlining government efforts to make program enhancements, and to develop policy and regulatory science initiatives. It would facilitate pharmaceutical companies’ use of the FDA guidance on ALS treatment development, and define or develop regulatory or translational pathways for treatment candidates. (Translational research emphasizes improved health outcomes.)

Finally, the collaborative would develop and implement a mechanism for sharing feedback about research, as well as strategies for providing accessible care services.

The ALS Association is asking bill supporters to urge lawmakers to cosponsor the ACT for ALS Act. The measure was referred to the House Committee on Energy and Commerce.

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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Inês holds a PhD in Biomedical Sciences from the University of Lisbon, Portugal, where she specialized in blood vessel biology, blood stem cells, and cancer. Before that, she studied Cell and Molecular Biology at Universidade Nova de Lisboa and worked as a research fellow at Faculdade de Ciências e Tecnologias and Instituto Gulbenkian de Ciência. Inês currently works as a Managing Science Editor, striving to deliver the latest scientific advances to patient communities in a clear and accurate manner.
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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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