A Free Resource That Will Simplify Insurance Appeals and Access to Care
ARLINGTON, Va., Feb. 19, 2025 -- The ALS Association has announced the launch of the ALS Insurance Navigator™, a free, easy-to-use resource created in response to the ALS community's challenges with insurance denials. The tool is designed to help people living with ALS and their families navigate complex health insurance processes, challenge denials and access the benefits they need and deserve.
A recent ALS Focus survey found nearly one-third of people living with ALS experience denials for critical services, including medications, power wheelchair modifications, and in-home care—leading to delays in treatment, financial strain and increased stress on families. Despite these barriers, research from the Kaiser Family Foundation shows that 80% of Medicare drug coverage denials that are appealed are ultimately overturned—yet only 10% of denials are ever challenged.
"This is something we've been seeing more frequently," said Melanie Lendnal, senior vice president of public policy and advocacy at the ALS Association. "These denials can have serious consequences on both quality of life and survival. Unfortunately, we're hearing anecdotally that these challenges are becoming more common."
The ALS Insurance Navigator™, allows users to better understand why claims are denied and how to interpret the complex language used in denial letters. The tool provides step-by-step guidance for navigating the appeals process, including access to letter templates, timelines, and tips for building a strong case. Additionally, it connects individuals to key resources, such as the ALS Association's care services team and our partnership with the Patient Advocate Foundation (PAF) to provide The ALS Insurance and Benefits Resource Line, another option designed to provide individualized case management assistance for people living with ALS, their family members and caregivers.
"Don't let the process wear you down," said Chris Spaulding, an ALS advocate living with the disease.
"The appeals journey isn't as daunting as it seems when you have the right support. I fought for months to get the treatment I needed, and without the ALS Association's guidance, I wouldn't have known where to turn."
Whether someone is new to managing insurance or in the middle of a current appeal, the ALS Insurance Navigator™ is designed to empower individuals and help them advocate for coverage and benefits. The ALS Association encourages people living with ALS and their caregivers to visit the ALS Insurance Navigator™ or als.org to learn more.
About the ALS Association
The ALS Association is the largest ALS organization in the world. The ALS Association funds global research collaborations, assists people with ALS and their families through its nationwide network of care and certified clinical care centers, and advocates for better public policies for people with ALS. The ALS Association is working to make ALS a livable disease while urgently searching for new treatments and a cure. For more information about the ALS Association, visit our website at www.als.org
About ALS
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Over the course of the disease, people lose the ability to move, to speak, and eventually, to breathe. The disease is always fatal, usually within five years of diagnosis. Few treatment options exist, resulting in a high unmet need for new therapies to address functional deficits and disease progression.
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