Navigating an ALS diagnosis is daunting enough without the added challenges of health insurance denials and appeals. For Chris Spaulding, resident of Spring, Texas, the journey to accessing critical medication sheds light on the obstacles many in the ALS community face and serves as a beacon of hope for those in similar situations.

On June 4, 2024, Chris heard those three terrible words, “You have ALS.” Devastated by the diagnosis, his initial reaction was to take on the disease with every tool available. Supported by his physician, renowned ALS expert Dr. Stanley Appel, Chris focused on accessing the treatment Radicava (edaravone), one of the few FDA-approved drugs for ALS.
What followed was a battle against his insurance provider that tested his resilience and highlighted the broader struggles many in the ALS community face when navigating their health insurance coverage and accessing the benefits they deserve.
Despite his relatively slow ALS progression, Chris’s request for Radicava was denied by the pharmacy benefit manager (PBM) handling his Medicare Part D coverage. The reason? Chris’s ALS Functional Rating Scale (ALSFRS-r) score indicated a need for assistance climbing stairs—not because of his disease progression, but because he admitted to habitually using a handrail for safety when going up and down stairs.
“They said that there was no confirmation that I retained all activities of daily living,” Chris explains.
Chris began the appeals process, supported initially by his clinic, Houston Methodist Neurological Institute, an ALS Association Certified Center of Excellence™. However, after multiple denials—including from a third-party Medicare contractor—he was left to fight on his own.
Frustrated but determined, he contacted the ALS Association, where he connected with Melanie Lendnal, our Senior Vice President of Public Policy and Advocacy.
“Melanie encouraged me to take my case to an Administrative Law Judge (ALJ),” Chris says. “She told me that it’s intimidating in theory, but the process itself is manageable—and that most cases end with a favorable ruling.”
Melanie’s advice proved invaluable. With her guidance, Chris compiled evidence, including a YouTube video of him climbing stairs without the use of a handrail, to challenge the denial.

In September 2024, Chris presented his case during an ALJ hearing. His testimony, supported by Melanie and the video evidence, prompted his PBM to immediately and without a fight reverse their denial on the spot.
“When I hung up the phone, I just broke down,” Chris recalls. “Time is of the essence for people with ALS. While I prevailed in the fight to obtain insurance coverage for Radicava, the actions of the PBM caused my starting on the treatment to be delayed for over 50 days when I could have been benefiting from the medication much sooner.”
Unfortunately, Chris’s ordeal is far from unique. Melanie highlights how insurance denials have become increasingly common, not just for drugs like Radicava, but also for essential equipment such as wheelchairs and noninvasive ventilation systems.
“This is something we’ve been seeing more frequently,” she says. “Obviously, that can have serious impacts on quality of life and quantity of life. And, unfortunately, this is something that seems to be increasing, anecdotally.”
And the broader statistics are telling. According to the Kaiser Family Foundation, only 10% of the 3.4 million Medicare drug coverage denials in 2022 were appealed—but 80% of those appeals were successful.
But Chris’s victory demonstrates the importance of perseverance and advocacy. For those facing similar challenges, Chris offers this advice:
Melanie echoes his sentiment. “Patients shouldn’t have to fight these battles, but when they do, we’re here to help. We’ll continue pushing for systemic changes to make access to ALS treatments equitable and straightforward.”

Chris’s story is a powerful reminder of the barriers people with ALS face and the importance of standing up for what’s right. His determination not only secured his access to Radicava, but also inspires others in the ALS community to fight for their own care.
Together, we can work toward a future where no one has to battle for the care they deserve.
Special thanks to Chris for allowing us to share his inspiring story with the ALS community.
Learn more about navigating insurance denials and appeals and find resources on our website here.
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.
Join the conversation. Please comment below.