(Washington, D.C.) - U.S. Senator David Vitter (R-La.) today introduced the bipartisan Steve Gleason Act of 2015 in the U.S. Senate to help patients diagnosed with diseases such as Amyotrophic lateral sclerosis (ALS) like Steve Gleason, former professional football player with the New Orleans Saints, live more independent lives. Vitter's bill is co-sponsored by Senators Amy Klobuchar (D-Minn.) and Angus King (I-Maine). Congresswoman Cathy McMorris Rodgers (R-Wash.) is introducing the companion bill in the House of Representatives along with original co-sponsors Congressmen Steve Scalise (R-La.) and Erik Paulsen (R-Minn.). The legislation is endorsed by Steve Gleason's advocacy organization, Team Gleason, the ALS Association, the American Speech-Language Hearing Association, Center for Medicare Advocacy, the American Occupational Therapy Association, and the United Spinal Association.
"Steve Gleason has given hope to patients with ALS and other debilitating diseases across the country. Through his efforts and the tremendous work of Team Gleason, folks with these types of disabilities are living fuller, more independent lives," Vitter said. "Our legislation gives us the opportunity to extend those efforts in a way that empowers ALS patients across the country. Steve's recent visit to Washington gave us huge momentum with our colleagues in Congress and with the Administration for moving this critical legislation."
"Steve's message has always been ‘until there is a medical cure for ALS and other debilitating diseases, technology can be that cure'. This legislation provides needed changes to current policy that will give back some of what these diseases take away. Steve is honored to have his name attached to this important work, but most importantly, humbled to be the voice for so many who are fighting to be heard," said Clare Durrett, Associate Executive Director of Team Gleason.
"Steve Gleason's story and his advocacy on behalf of those affected by severe disabilities like ALS serve as an inspiration to all Americans," Scalise said. "I'm honored to join Steve, Sen. Vitter, and Reps. McMorris Rodgers and Paulsen in the fight against ALS. Debilitating diseases like ALS do not have to mean defeat, and the Steve Gleason Act of 2015 brings about much-needed reforms to help provide more independence to those with disabilities who are seeking treatments, cures and opportunities. I am proud that House and Senate Republicans are uniting to champion this critical piece of legislation for those who refuse to let a disease like ALS define them."
The Steve Gleason Act of 2015 would make the following reforms:
- Gives immediate relief for patients who have been denied access to speech generating devices (SGDs) since the Administration's rule change in 2014
- Ensures SGDs are classified as medically necessary and are categorized as "routinely purchased" under Medicare
- Reverses the Centers for Medicare & Medicaid Services (CMS) capped rental policy to allow patients to own their devices and continue using them in facilities such as nursing homes
- Ensures eye tracking technology and gaze interaction accessories are covered under Medicare for ALS patients with demonstrated medical needs. NOTE: this is how Gleason is able to verbally communicate.
Vitter worked with Team Gleason last year to pressure CMS to rescind a designation that limited access for certain medical equipment, including the speech generating device that Gleason uses.
In the 113th Congress, Vitter along with Senator Chuck Schumer (D-N.Y.) introduced bipartisan legislation, the Ensuring Access to Quality Complex Rehabilitation Technology Act, which would create a separate benefit category for Complex Rehab Technology (CRT), such as a power chair or speech devices, within the Medicare program. Click here to read more.
Gleason was diagnosed with ALS in January 2011. He has since been confined to a wheel chair and lost his ability to speak. Gleason's speech generating device has allowed him to regain his ability to communicate. Team Gleason has worked to provide individuals with neuromuscular diseases with leading edge technology and create a global conversation about ALS to ultimately find effective treatment and a cure.
Earlier this month, Gleason came to Washington D.C. as Vitter's guest to the State of the Union. Vitter and Team Gleason met with U.S. Department of Health and Human Services Secretary Sylvia Burwell to discuss ALS legislation. Click here to read more.