Representative Mike Garcia (CA-25) released the following statement after the bipartisan, bicameral Accelerating Access to Critical Therapies for ALS Act (ACT for ALS), or H.R. 3537, passed the House. Garcia co-sponsored this legislation that would 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.
 
“I am pleased that the House passed this vital legislation which would help speed up clinical trial therapies for those with ALS and other neurodegenerative diseases,” said Garcia. “Currently, the FDA blocks any opportunity for individuals with ALS to seek medical treatment that has not been through their full and lengthy approval process. Any treatment that could slow the onset of symptoms or provide an increased quality of life would be a miracle for many ALS patients and their families. It is past time that the FDA allows patients access to promising  new treatments  that could restore patients’ dignity and hope.  With a 100% fatality rate, individuals with ALS do not have time— but they deserve it.”
 
ACT for ALS would create a public-private partnership for the rare neurodegenerative disease at the Department of Health and Human Services (HHS) to streamline the development and approval of innovative therapies. The legislation would also establish a grant program at FDA related to rare neurodegenerative diseases.
 
“This bipartisan bill would provide those living with ALS improved access to promising clinical therapies and also pave the path for future understanding and improved treatments for ALS and other neurodegenerative diseases,” said Garcia. “I urge the Senate to move quickly and pass this legislation to provide those with ALS the hope they deserve.” 
 
The legislation is supported by I AM ALS, The ALS Association, and the Muscular Dystrophy Association.
 
Click here to read the text of the bill.