ALS Association’s 2020 National Advocacy Conference Goes Virtual

Not to be deterred by the COVID-19 pandemic, ALS Association advocates from across the country held more than 350 virtual meetings with members of Congress Tuesday, adapting the Association’s longstanding annual Advocacy Conference to ensure the safety of participants. Historically, upwards of 600 ALS advocates gather in the nation’s capital for days of face-to-face meetings with their elected representatives in the Congress and the Senate.   

“COVID-19 makes our policy priorities all the more relevant,” said Kathleen Sheehan, vice president of public policy at The ALS Association. “The pandemic exacerbates the financial, emotional and clinical needs of the ALS community and it was imperative to let legislators know that, even if it meant modifying our conference to a new platform.”

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ALS Association Presses Congress to Expand Access to Health Care as Part of COVID-19 Response

The ALS Association joined with 32 consumer and patient advocacy organizations in calling on Congress to enact legislation in response to the COVID-19 pandemic that protects and expands access to quality, affordable health insurance. 

“The COVID-19 pandemic has made abundantly clear that all people need access to adequate and affordable health insurance coverage now more than ever. Research has demonstrated that access to comprehensive health insurance means access to timely, medically necessary health care. If someone without health insurance today contracts the COVID-19 virus, they may be forced to make the difficult decision to not be tested and treated due to fears about the cost of care. That puts our entire society – particularly the people we represent – at risk,” the organizations stated in a letter sent to Congressional leaders. 

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Noninvasive Ventilators Removed from Competitive Bidding in Big Win for ALS Community

The Medicare program at the Centers for Medicare & Medicaid Services removed noninvasive ventilators from competitive bidding for durable medical equipment. The decision will keep the devices out of competitive bidding for at least three years and is a victory for ALS advocates. The ALS Association and its partners have led an intense lobbying campaign against competitive bidding for noninvasive ventilators for more than a year. The Medicare program cited COVID-19 in announcing the move.

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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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