WASHINGTON, D.C. – U.S. Senators Susan Collins and Angus King praised yesterday’s unanimous passage of the Steve Gleason Act of 2015, which will help support patients diagnosed with diseases like Amyotrophic lateral sclerosis (ALS) to live more independent lives by making speech generating devices (SGDs) more accessible.
Senators Collins and King are both original cosponsors of the legislation, which is named in honor of former professional football player Steve Gleason, who was diagnosed with ALS in January 2011.
“The unanimous passage of this legislation is a true testament to Steve Gleason’s tenacity and commitment on behalf of the ALS community,” said Senator Collins. “Speech-generating devices restore communication for people with ALS and enable them to live more independently, despite their diagnosis. This bipartisan legislation would remedy a current flaw in Medicare policy that has limited many ALS patients from receiving these communication devices and enable more Americans with ALS to recapture their voices.”
“ALS can be a devastating and debilitating disease, but inspiring people like Steve Gleason demonstrate the power of hope and perseverance in the face of remarkable odds,” said Senator King. “As we continue to work towards a cure for ALS, we can help empower those struggling with the disease to live independent lives by making speech generating devices easier to obtain. The ALS community faces enough challenges as it is, and accessing devices to help them communicate with others shouldn’t be one of them.”
The Steve Gleason Act of 2015 will make the following reforms:
· Give immediate relief for patients who have been denied access to SGDs by a rule change which reclassified certain medical equipment – particularly speech devices – into a different category, making them more expensive.
· Reverse 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
· Ensure eye tracking technology and gaze interaction accessories are covered under Medicare for ALS patients with demonstrated medical needs.
The bipartisan bill is led by Senator David Vitter (R-La.) and, along with Senators Collins and King, is also cosponsored by Senators Amy Klobuchar (D-Minn.), Lisa Murkowski (R-Alaska), Chuck Grassley (R-Iowa), and Mark Kirk (R-Ill.).
A companion bill has been introduced in the House of Representatives and House leadership has assured Vitter that it will come to the House floor for a vote. 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.
Gleason, a former special teams standout for the New Orleans Saints, has been determined to inspire others diagnosed with ALS to live a rewarding life, and to inspire new medical developments to ultimately find a cure for the disease. Since his diagnosis, Gleason and his family and friends have raised ALS awareness and funding through the organization Team Gleason. After years of battling the disease, Gleason has been confined to a wheel chair and lost his ability to speak. He was able to regain his ability to communicate through his speech generating device.