Legislators Celebrate Bipartisan Victory for ALS Community

Washington, DC –Today Representatives Cathy McMorris Rodgers (R-WA), Erik Paulsen (R-MN), and Representative John Tierney (R-MA) and Senator Susan Collins (R-ME) released the following statement regarding the Centers for Medicare and Medicaid Services’ (CMS) decision to reconsider how speech generating devices (SGDs) are covered.In September, Representatives McMorris Rodgers, Tierney, and Paulsen and Senator Collins spearheaded a bipartisan letter to CMS requesting an explanation for policy changes affecting the coverage of these devices, which impacted millions of Americans living with neurological and degenerative disabilities.  

“We are happy to see CMS acknowledge the fact that 21st Century technology is changing lives by enabling millions of Americans to communicate with their loved ones, their medical providers, and the rest of the outside world – because without this technology, their degenerative and crippling medical conditions made communication impossible. This decision marks a step in the right direction, and hopefully a step towards CMS embracing modern innovation in their coverage and payment decisions.

“Still, there is much more work to be done – and we urge CMS to address the other issues we raised in our September letter, such as how CMS’s capped rental policy disproportionately affects patients who rely on speech generating devices.Together we will continue to advocate for this community, and we are hopeful CMS will continue to support these life-changing technologies.”  

Last week CMS instructed Medicare contractors to rescind their coverage reminder and coding review, which was impacting Medicare patients’ ability to both “unlock” their SGDs and use their own money to add on functionalities to help lead productive lives. CMS’s recent decision to open a new coverage determination for SGDs will consider how the technology and use of augmentative and alternative communication devices by patients to meet their medical needs has changed significantly since the last coverage determination in 2001.

Today, thanks to 21st century technology, patients can use speech devices for a wide range of purposes not previously possible, such as tele-health and email.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. 

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


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