How The ALS Association’s is Pursuing 2020 Public Policy Priorities During the COVID-19 Pandemic

ALS Association chapter executives from across the country held more than 250 meetings with members of Congress Wednesday as part of the Association’s annual “fly in” advocacy push. While the meetings generally occur in-person in Washington, D.C., this year’s discussions shifted to virtual platforms in response to the ongoing COVID-19 pandemic and emerging social distancing and shelter in place rules across the country. 

Chief among the concerns of ALS advocates is making sure that legislation being drafted in response to the pandemic includes protections for people living with ALS and their caregivers, including protecting access to noninvasive ventilators and making sure people with ALS are not forced to wait five months to access Social Security Disability Insurance. 

To hear an in-depth discussion of how the Association is advocating during the pandemic, listen to the latest episode of Connecting ALS. 

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Medicare Coverage for Telehealth Visits Expanded During COVID-19 Pandemic

In response to congressional action, The Centers for Medicare and Medicaid Services notified providers of a new option for expanded Medicare coverage for telehealth visits.  These changes temporarily remove originating site and geographic restrictions from coverage of telehealth under Medicare fee-for-service.  This coverage applies to all Medicare-approved telehealth services.

The government temporarily waived restrictions on telehealth in Medicare fee-for-service to enable more seniors to access care from their own homes during the public health emergency brought on by the coronavirus. The provisions were included in the Coronavirus Preparedness and Response Supplemental Appropriations Act.

The telehealth waiver applies to treatment of all diagnosis during the Public Health Emergency, not just COVID-19-related visits.

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ALS Association Joins Coalition Fighting to Protect Vulnerable Populations in Face of COVID-19

Letter to Congress calls for swift action to expand access to health care and facilitate social distancing

The ALS Association cosigned a letter with 27 patient and consumer organizations calling on Congress to act decisively to slow the spread of the coronavirus that causes COVID-19, particularly among vulnerable populations. 

People with pre-existing conditions are at increased risk of infection and adverse health outcomes from COVID-19. For this reason, it is essential that any legislative package taken up in the Senate ensures that the health care system has adequate capacity to provide necessary care to patients with pre-existing conditions and robustly addresses public health needs. 

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ALS Focus Launches and Seeks Participants for Important Ongoing Survey Program

Today, The ALS Association launched the ALS Focus survey program. The goal is to recruit people living with ALS and their caregivers to capture their experiences and preferences. Data will be collected in a scientifically rigorous way through quarterly surveys. ALS Focus will provide a deep and evolving understanding of disease burden and experiences of people with ALS and their caregivers. 

The program is a stakeholder driven and collaborative program run by people with ALS, caregivers, academics, industry, government, and ALS Association leadership. Together, they  will ensure a unified and truly representative “voice” for the ALS community. This information is critical to ensure that the voice of people living with the disease directly informs research, clinical, regulatory, and drug company decisions.

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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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