ALS Association Board Member Urges Congress to Protect the Right to Breathe

Tommy May, a member of The ALS Association National Board of Trustees, published a column in Morning Consult, a leading digital media platform among lawmakers, today urging Congress to protect access to noninvasive ventilators. May was diagnosed with ALS in 2005. He has used a ventilator since 2013 when his disease progression made it difficult for him to breathe on his own.

“Under a new rule created by the agency that runs Medicare, noninvasive ventilators will be included in the Competitive Bidding Program (CBP) for Durable Medical Equipment, Prosthetics, Orthotics, and Supplies (DMEPOS). Under this new system, the delivery of the respiratory care and services I, and many like me, rely on will be severely disrupted and lead to a potentially dangerous shortage of this equipment,” May wrote.

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2019 Highlights in the Fight Against ALS

As 2019 winds down, we look back on some of the important progress made this year in the fight to change the future of ALS. With the hard work and help from so many across the ALS community, the ALS Association was able to make great strides in our key mission areas, bringing us one step closer to our vision of a world without ALS.

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Future of Affordable Care Act Uncertain After Court Ruling

Court Ruling leaves Affordable Care Act’s (ACA) provisions in place, including protections for pre-existing conditions for people with ALS and other Americans. But court keeps long-term future of ACA in limbo.

The ALS Association joins with other leading patient advocacy organization in a joint statement expressing disappointment on a ruling in the Texas v. United States court case which challenges the legality of the Affordable Care Act (ACA). The statement was signed by 27 other groups including American Heart, American Lung, American Diabetes, MDA. See the full statement here.  

What is most important for people living with ALS and their families to know is that the decision left the Affordable Care Act in place for the moment. This means that protections for pre-existing conditions stay in place. Coverage purchased from healthcare.gov remains valid and coverage provided by states under Medicaid expansion continues.  

However, the ruling left the ACA in limbo by affirming the unconstitutionality of the individual mandate and by sending the case back to a lower court to decide if key patient protections will remain in the future.

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Lawmakers Agree on Spending Bill that Fully Funds ALS Association Priorities

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. 

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ALS Community Responds to FDA Guidance Document with Call for More Urgency, Flexibility

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 rule making process. Click here to view the comments.

The ALS Association has been working closely with members of the ALS community and the FDA to create a landmark, patient-led guidance initiative that will help drive ALS drug innovation more quickly from the laboratory to the patient, providing feedback to the agency, hosting a national workshop, and creating a report that informed finalization of the guidance. 

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ALS Association Joins Coalition Partners to Lead Fight for Access to Noninvasive Ventilators

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.

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How ALS Association Advocates Boosted Congressional Funding for ALS Research

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. 

Now that a government shutdown has been averted until just before Thanksgiving, it is worth reflecting on the hard work and success The ALS Association and its advocates have had in securing funding for ALS research and to look ahead to what’s next.

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