Legislators Call For Answers On Behalf of ALS Community

Washington, DC – Today Representatives Cathy McMorris Rodgers (R-WA), John Tierney (D-MA), and Erik Paulsen (R-MN), and Senator Susan Collins (R-ME) sent a bipartisan, bicameral letter to the Centers for Medicare and Medicaid Services (CMS) requesting an explanation for recent policy changes impacting millions of Americans living with neurological and degenerative disabilities. They released the following statement on these changes, which limit patient access to speech generating devices (SGDs) .

“Americans rely on these innovative technologies as their only means to continue communicating with family, friends, and the outside world, but CMS’s recent actions are now limiting their ability to benefit from these tools that help lead to independent, productive lives. After hearing from numerous individuals living with ALS and other degenerative disabilities, we urge CMS to explain its shortsighted policy decisions. Together we stand with the millions of Americans living with degenerative disabilities who are being impacted. We must empower men and women with the opportunity to utilize 21st century technologies that can have a tremendous impact on their quality of life.”

These changes by CMS impact patient access to speech generating devices, including eye tracking technology, which is often the only option for those with advanced degenerative conditions. Patients living with cerebral palsy, amyotrophic lateral sclerosis (ALS), Rett Syndrome, muscular dystrophy, multiple sclerosis, Parkinson’s disease, brain stem stroke, locked-in syndrome, and traumatic brain injury are affected by these changes. 

This letter seeks an explanation from CMS for these revisions, which include the prevention of unlocking of SGD devices — which expand their functionality — when Medicare is not being asked to cover or pay for those expanded functionalities.  

Representatives McMorris Rodgers, Tierney, Paulsen and Senator Collins were joined by 200 legislators who signed onto this bipartisan letter to CMS and Administrator Marilyn Tavenner. 

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