McMorris Rodgers, Scalise, Vitter and Paulsen Introduce Steve Gleason Act to Stand Up for ALS Community

Washington, DC– Today Rep. Cathy McMorris Rodgers (R-WA), House Majority Whip Steve Scalise (R-LA), Rep. Erik Paulsen (R-MN), and Senator David Vitter (R-LA) released the following statement after introducing the Steve Gleason Act of 2015 in the House, which ensures patients have access to speech generating devices (SGDs). This technology allows millions of Americans with degenerative and crippling medical conditions to communicate with the outside world. This commonsense legislation reverses shortsighted policy changes made by the Centers for Medicare and Medicaid Services (CMS) that have limited access to this technology and made communication impossible for individuals suffering from degenerative conditions.

“We live in a 21st-centuryworld in which innovative technologies empower millions of Americans living with degenerative disabilities to effectively communicate. Unfortunately, shortsighted and cumbersome CMS policies have limited their ability to benefit from tools that help lead to independent, productive lives. After hearing from the ALS community, including Steve Gleason, an individual whose perseverance and commitment to expanding access to speech generating devices is inspiring, we continue our efforts to advocate for these men and women in Congress. All Americans living with ALS and other degenerative diseases should have the opportunity to communicate with family, friends, care providers and the outside world, and this legislation will make that a possibility. It will help millions of men and women utilize technologies that can tremendously improve their quality of life. Together we are united in standing up for all people who are suffering from these CMS policies.”

The Steve Gleason Act of 2015 will reverse CMS’s capped rental policy, allowing patients to own their devices and continue to use them in facilities such as nursing homes. Additionally, it clarifies that Medicare will cover eye tracking and gaze interaction accessories for patients with demonstrated medical needs.

In September 2014, Representatives McMorris Rodgers, Scalise, Paulsen and Senator Vitter were joined by 200 Members in sending a bipartisan, bicameral letter to CMS and Administrator Marilyn Tavenner seeking an explanation for policy changes, including the prevention of unlocking of SGD devices. CMS responded by showing a willingness to modernize their regulations to allow beneficiaries to benefit from new technologies that give individuals the ability to communicate on state of the art devices in ways never thought possible. While it is encouraging the Administration has made an effort to work with Congress by opening a new National Coverage Determination (NCD), the NCD process will take an additional seven months, while CMS’s capped rental policy and directives on coverage of eye tracking accessories continue to disproportionately and presently affect patients who rely on speech generating devices.  The goal of this legislation is to help patients right away who have currently lost the ability to use these devices due to these regulations.

In January 2011, Steve Gleason, a former New Orleans Saints player, was diagnosed with Amyotrophic Lateral Sclerosis (ALS).  He has since been confined to a wheel chair and has lost his ability to speak.  Steve has used the same perseverance he exhibited on the football field with this disease and has made it his mission to expand access to the speech generating device that he uses to communicate with his wife, son, family, friends, and caregivers.  Since his diagnosis he formed a foundation, “Team Gleason,” which helps provide individuals with neuromuscular diseases with leading edge technology, and create a global conversation about ALS to ultimately find effective treatments and a cure.

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