Telehealth: Exploring Ways to Provide ALS Care for Everyone, Everywhere

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Momentous events have a way of not just changing us, but changing how we speak as well. For example, before 2020 and the COVID-19 pandemic, the word “zoom” meant many things, but a verb meaning “to join a virtual online meeting” was not one of them.

But beyond creating new meanings for old words, the pandemic introduced many of us to new ways of doing things, including introducing many people in the ALS community to telehealth and the important role it can play in supporting the delivery of health care services.

“Telehealth has been an extreme benefit to people living with ALS because some people, because of their geography, aren't able to make it to a multidisciplinary clinic,” said ALS Association Vice President, Community & Professional Education Lesie Ryan. “Some people cannot make it to clinic because of their disease progression and it's just too exhausting, too taxing on them to get out and go to the clinic day.”

Telehealth has allowed that team to come into people's homes instead. And so, being able to meet people where they are and make sure that they're still getting the care that they need, they're still getting the treatments and management of the disease has been extremely beneficial to people living with ALS.”
Leslie Ryan
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The value of telehealth and its benefits for people living with ALS was considered significant enough by National Academies to be included in its recent groundbreaking report on how to make ALS livable as an important tool whose use should be expanded. “Innovative approaches to bringing care to people with ALS will also be encouraged; examples may include expanded telehealth services,” the report noted as part of its recommendations.

The National Academies pointed out that while the number ALS multidisciplinary care clinics has expanded significantly since the Ice Bucket Challenge in 2014, there are still a large number of people living with ALS who could benefit from telehealth visits as part of their ALS care plan when getting to a clinic may be difficult.

Dr. John Novak, a neurologist and medical director at OhioHealth, an ALS Association Certified Treatment Center of Excellence in Columbus, Ohio, has seen these benefits firsthand.

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“(We) typically do one or two patients by (telehealth) each week. This can be someone who's mobility is reduced and it's very difficult to get out, or someone who's just far away,” Dr. Novak said. “So someone who might have to drive two hours, we can now camera-in. We can have our therapists talk to everybody. Sometimes we can even see the layout of their house, which helps our therapists.”

There are, however, challenges to being able to provide telehealth services to all who could benefit from them. During the public health emergency caused by the COVID-19 pandemic, every state issued a waiver and/or developed expedited telehealth licenses, allowing residents to meet virtually with doctors across state lines. Unfortunately, most of these waivers or regulations were not extended beyond the pandemic, meaning it can be difficult or impossible for many people living with ALS currently to receive telehealth care from doctors from another state.

ALS advocates are working on the state and national level to ensure that all people living with ALS can access telehealth services. The National Academies report recommends that telehealth be available without state line restrictions for people with the disease in a similar manner to how ALS patients served by the VA are able to access telehealth nationally.

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To further aid the ALS community, earlier this year we announced a partnership with Synapticure, a leading telemedicine company focused on improving the lives of people and caregivers living with neurodegenerative diseases. Through this collaboration, we will offer Synapticure's innovative telemedicine platform to supplement in-person visits at ALS Certified Treatment Centers of Excellence and Recognized Treatment Centers.

The partnership will provide people living with ALS access to both local and national resources. A designated ALS Association patient liaison will be embedded within the Synapticure virtual clinic to help navigate the healthcare landscape and help provide personalized support to the care they need.

The is no doubt that telehealth is here to stay, and that it is beneficial to the ALS community. We are committed to working across public and private sectors to ensure that people living with ALS have access to the telehealth care they need and deserve to ensure that ALS is livable for everyone, everywhere, until we can cure it.

To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog.

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