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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How Gardening is Part of Caregiving: Bill Dodge’s Story

November is National Family Caregivers Month, a time to recognize and honor the tremendous contributions of family caregivers. Throughout the month we have been sharing stories of caregivers in the ALS community. Caregiving is a full-time job, and many caregivers also maintain full time jobs while dealing with the financial and emotional stress that comes with being a caregiver. 

Bill Dodge, who served as a caregiver to his wife, Laura until her ALS journey ended earlier this year, remains a passionate advocate for ALS funding and public policies. We sat down to talk to him about why he continues to fight earlier this year.

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Caregiver Opens Up About ALS and the Holidays

Jen LeVasseur’s caregiver journey began while she was still a newlywed. Her husband, Noel, was diagnosed with ALS just 17 months after their wedding. 

Noel has two daughters from a previous marriage, Jen two sons. (They embrace the Brady Bunch, blended family analogy.)

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