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Home Healthcare Plan News Leading ALS Organizations Celebrate House Passage of ACT for ALS

Leading ALS Organizations Celebrate House Passage of ACT for ALS

Posted on December 8, 2021 Written by Annalyn Frame

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).

Filed Under: Healthcare Plan News

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About Annalyn Frame

Annalyn Frame
Editor-in-Chief, Health Plan News

Annalyn Frame
Editor-in-Chief, Health Plan News

Annalyn Frame is a dedicated registered nurse and accomplished healthcare journalist known for her commitment to promoting accessible and accurate healthcare information. With a unique blend of medical expertise and editorial prowess, Annalyn serves as the Editor-in-Chief of Health Plan News, a leading online platform at the forefront of disseminating essential insights into the ever-evolving landscape of health plans, wellness strategies, and healthcare policy.

Professional Background:
Annalyn's journey in healthcare began as a passionate registered nurse, where she honed her clinical skills and developed a deep understanding of patient care. Her experience in various healthcare settings, ranging from bustling urban hospitals to rural community clinics, has given her a comprehensive perspective on the challenges and opportunities within the industry.

Driven by her desire to bridge the gap between medical knowledge and public awareness, Annalyn transitioned into healthcare journalism. Her keen ability to dissect complex medical concepts and translate them into easily digestible content quickly set her apart as a prominent voice in the field. Her articles, renowned for their clarity and accuracy, have empowered individuals to make informed decisions about their health and well-being.

Editorial Leadership:
As the Editor-in-Chief of Health Plan News, Annalyn Frame brings her healthcare expertise to the forefront. Under her guidance, the publication has become a trusted resource for professionals and consumers alike, offering timely updates on health insurance trends, legislative changes, cost-saving strategies, and innovative healthcare solutions. Annalyn's commitment to journalistic integrity ensures that readers receive information that is not only up-to-date but also reliable, enabling them to navigate the complexities of healthcare with confidence.

Advocacy and Impact:
Beyond her role as an editor, Annalyn remains a staunch advocate for accessible healthcare and health literacy. She frequently participates in community health workshops, seminars, and public speaking engagements, where she empowers individuals with the knowledge they need to take charge of their health. Annalyn's dedication to improving healthcare access extends to her volunteer work with underserved populations, where she leverages her nursing background to provide hands-on care and education.

Education:
Annalyn Frame holds a Bachelor of Science in Nursing (BSN) degree from a respected institution. Her academic foundation, coupled with her hands-on experience, allows her to offer a well-rounded perspective on healthcare matters.

Annalyn Frame's dynamic blend of nursing expertise and editorial leadership has made her a driving force in both healthcare and journalism circles. Her unwavering commitment to delivering accurate, approachable healthcare information through her role as Editor-in-Chief of Health Plan News underscores her mission to empower individuals and promote positive change within the healthcare industry.

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