Congressman Mike Garcia, R-Santa Clarita, recently co-sponsored the bipartisan, bicameral bill Accelerating Access to Critical Therapies for ALS ACT (ACT for ALS), House Resolution 3537.
This bill is set to create the infrastructure needed to fund early access to promising clinical trial therapies for patients who suffer from fast-progressing rare neurodegenerative and terminal diseases, like ALS.
“It is imperative that we take action to help those who suffer from ALS and other neurodegenerative diseases,” Garcia said in a statement Wednesday. “ALS is a 100% fatality disease, and people with ALS are in a sense drowning because the FDA refuses to throw them a life-boat due to fear that the life-boat may have a hole.”
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ACT for ALS is scheduled to create a public-private partnership for the rare neurodegenerative disease at HHS to streamline the development and approval of innovative therapies.
The legislation would also work to establish a grant program at FDA related to rare neurodegenerative diseases.
“It is past time that we throw those with ALS the life-boat they deserve, which is why I am proud to co-sponsor this bipartisan bill that would provide those living with ALS with improved access to promising clinical therapies and also paves the path for future understanding and improved treatments for ALS and other neurodegenerative diseases,” concluded Garcia.
The legislation is supported by I AM ALS, The ALS Association and the Muscular Dystrophy Association.
To read the entire ACT for ALS, H.R. 3537 bill, click here.
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