Today, the Muscular Dystrophy Association, I AM ALS and the ALS Association issued the following statement regarding today’s passage of ACT For ALS in Congress:
“I AM ALS” The ALS Association and Muscular Dystrophy Association (MDA), celebrate today’s passage of ACT for ALS (H.R.3537/S.1813). We call on the Senate to immediately take action and send this bill to President’s desk. Today’s passage is possible thanks to the leadership of the House, including Congressmen Quigley & Fortenberry.
This bill, which has more than 330 House cosponsors and 50 Senate cosponsors this year, has more cosponsors this year than any other bill in Congress. This legislation is now one step closer in making a difference in the lives and health of people living with ALS or other rare neurodegenerative disorders.
ACT for ALS is a grant program that provides access to investigational ALS treatments for those living with ALS and who are unable to participate in clinical trials. It also supports research on treatment safety, ALS progression, and funding for research.
This legislation funds neurodegenerative disease research via a new Food and Drug Administration (FDA), Rare Neurodegenerative Disease Grant Program. This program is crucial to keep the FDA and other federal agencies working quickly to find cures and treatments that can be approved and covered by insurance.
The ACT for ALS would create a Health and Human Services Public-Private Partnership for Rare Neurodegenerative Diseases (HHS) jointly headed by the FDA and National Institutes of Health, which is the first federal entity specifically charged with speeding the development and approval of treatments for rare neurodegenerative disorders.
‘Today we celebrate the fierce community and advocates who were relentlessly in making ACT For ALS the most supported bill in Congress,’ Megan Miller, I AM ALS Director for Science and Policy, said. ‘Today’s overwhelming support and passage by the House of Representatives are a direct result of advocates’ unwavering determination and commitment to improving the lives of those living with ALS today, and into the future. I AM ALS joins them in calling for urgent action in the Senate. It is high time that we take action to end this deadly disease.
Dr. Neil Thakur, Chief Mission Officer of the ALS Association, stated that ‘we have worked closely with Congress as well as advocates to pass this measure to fund early access to ALS investigational treatments as well as new funding to FDA for ALS research and development. The passage of this bill is crucial for the people with ALS.
“Today’s unanimous bipartisan House passage (ACT for ALS) further highlights the importance of enacting legislation as soon as is possible. It is now time for the Senate’s to act. The Muscular Dystrophy Association supports this legislation and is ready to work with senator leaders and bill sponsors to make it a reality,” said Paul Melmeyer (Vice President, Public Policy and Advocacy at Muscular Dystrophy Association).
