A 2020 federal spending agreement reached Monday between House and Senate negotiators would fully fund key spending priorities of The ALS Association and its advocates. ALS advocates have sent 13,800 letters and 3,600 tweets, and held more than 700 meetings in the past year to secure full federal funding of ALS research.
With many ALS drugs now in phase II and III clinical trials, The ALS Association is considering strategies that will ensure any new treatments are accessible and affordable. We used our second ALS Roundtable to explore several important questions for our community including: How will these new therapies get paid for? How can people access to them? How long will it take to get access?
The ALS Association submitted a report to the FDA documenting the real impact ALS has on people living with the disease and their caregivers in order to inform the development of treatments. The information in the report draws from a survey of people living with ALS.
The ALS Association and its partners submitted comments to the Food and Drug Administration to further inform the agency’s implementation of the final guidance on the development of drugs and treatments for ALS. The comments underscore the need for urgency and commend the FDA for including voices from our community in its rulemaking process. Click here to view the comments.
A bill championed by The ALS Association was introduced in Congress today that would remove noninvasive ventilators from Medicare’s competitive bidding program. Reps. Morgan Griffith (R-Va.), Peter Welch (D-Vt.), Gus Bilirakis (R-Fl.), John Larson (D-Ct.), and Darren Soto (D-Fl.) have introduced H.R.4945, the Safeguarding Medicare Access to Respiratory Therapy (SMART) Act of 2019.
Last week Congress passed, and the president signed, a continuing resolution that will fund all federal programs at current levels through November 21. Before the continuing resolution expires, Congress must either pass full appropriations bills for the 2020 fiscal year or pass another continuing resolution.
On Monday, the Food & Drug Administration (FDA) issued a finalized ALS Drug Development Guidance for Industry. This is one important step in comprehensive efforts to bring therapies to people with ALS more quickly. Five years ago, there was no clarity around what the FDA expected from companies pursuing ALS treatments. The ALS Association recognized this problem, galvanized the broader community, and engaged the FDA to provide a clear roadmap that also can respond to new science as it emerges. The FDA Guidance is one part of a commitment that will not be complete until we have a cure for all people with ALS.
The ALS Association is deeply committed to accelerating the development of novel ALS therapies and ensuring they are accessible to those who need them. The Association is announcing today its latest strategic action with the release of Principles for Urgent, Patient-Centered ALS Clinical Trials: a series of recommendations to clinical trial sponsors and regulatory bodies worldwide.
With Congress home for the August recess, The ALS Association is redoubling its efforts to build upon momentum toward achieving a long-sought policy goal – the elimination of a five-month waiting period for Social Security Disability Insurance.
Bipartisan Legislation Eliminates Five-Month Waiting Period for SSDI Benefits for People Diagnosed with ALS
The ALS Disability Insurance Access Act was reintroduced in the 116th Congress this week as S.578 in the Senate by Senator Sheldon Whitehouse (D-RI) and Senator Tom Cotton (R-AR). Representatives Seth Moulton (D-MA) and Peter King (R-NY) introduced the companion bill in the House as H.R.1407.
Every two years, hundreds of ALS health care professionals come together to discuss new trends, share best practices and guidelines, exchange ideas and successes, and talk about challenges and potential solutions. To capture the collaborative power of the 2018 event in Fort Worth, Texas – our largest-ever Clinical Conference, with more than 500 attendees – we put together a short video highlight reel.
At our most recent clinical conference, we honored Frances (Fran) McClellan with the Lawrence A. Rand Prize. The award recognizes the courage, passion, integrity, and commitment of people serving the ALS community as volunteers, health care professionals, educators, communicators, or in other ways contributing to the quality of life of people living with ALS. It was established by Lawrence Rand, a former chairman of the Association’s Board of Trustees who played a major role in laying the cornerstone of what is now The ALS Association.
We had the pleasure of joining ALS scientists, clinicians, health care professionals, industry and advocacy partners, and, most importantly, people with ALS and their families at the annual events hosted by the International Alliance of ALS/MND Associations and the MND Association last month. It’s always a great opportunity to come together and learn from each other.
It is with heavy hearts that we share that Stephen Winthrop, Chair of The ALS Association Board of Trustees and person with ALS, died peacefully early Monday morning. Our hearts are with his wife, Jane, and their two daughters.
The ALS Association joined 37 patient groups opposing a decision from a federal court in Texas that declared the Affordable Care Act (ACA) unconstitutional. The Texas v. United States decision is expected to be appealed to the U.S. Court of Appeals for the Fifth Circuit.
Last year, I sat in the Washington, D.C., offices of my four elected Indiana representatives and saw in their eyes how my words, and the words from my wife, pierced their hearts.
The ALS community recently presented its recommendations to the U.S. Food and Drug Administration (FDA) regarding the Amyotrophic Lateral Sclerosis: Developing Drugs for Treatment Guidance for Industry at a day-long event, called ALS Community Workshop: Therapy Development and Regulatory Pathways, which was held in Washington, D.C., on July 12. Over 90 people attended in person, with many more tuning in online.
Under current law, people disabled with ALS who qualify for Social Security Disability Insurance (SSDI) must wait five months before receiving SSDI benefits. Every person must wait, regardless of the level of disability or how fast the Social Security Administration (SSA) approves their claim.
Under current law, people disabled with ALS who qualify for SSDI must wait five months before receiving SSDI benefits. Every patient must wait regardless of the level of disability or how fast the Social Security Administration (SSA) approves their claim.
