July 16, 2015 WASHINGTON, DC – Steve Gleason, former NFL standout athlete for the New Orleans Saints, has redefined what it means to be a hero. Diagnosed with ALS (Amyotrophic Lateral Sclerosis, or Lou Gehrig’s disease) in 2011, Steve’s mind is unaffected by the disease, but he can no longer move any part of his body – except his eyes. He communicates his thoughts to the world through technology operated by his eye movements, in much the same way as physicist Stephen Hawking. Last year, Medicare took steps to restrict access to this technology, known as Speech Generating Devices (SGDs). Medicare’s action was unacceptable to Steve and others who need communication devices after experiencing ALS, strokes, traumatic brain injury, cerebral palsy, Parkinson’s, spinal cord injuries, chemical accidents, and many other types of injuries, accidents, and other complex neurological conditions.
Using the very technology Medicare stopped covering in many care settings last year, Steve first used his “Team Gleason” Foundation to ensure that everyone who needed a Speech Generating Device had one. Team Gleason became the safety net for many people that Medicare denied. Steve then called on Congress to stop Medicare’s restrictive policies on behalf of thousands of SGD users. He engaged members of Congress from his home-town district (in Eastern Washington) and his adopted home-town State (Louisiana). Motivated by Steve’s passion and tenacity, Senator David Vitter (R-La), Congressman Steve Scalise (R-La), and Congresswoman Cathy McMorris Rodgers (R-Wa) introduced legislation named for Steve. The Steve Gleason Act ensures that Medicare will pay for SGDs and it allows people to keep SGDs for as long as they need them, regardless of the care setting they find themselves in (hospital, skilled nursing or long term care facility, or hospice). It also provides coverage for accessories needed to allow the SGDs to work effectively.
After the Steve Gleason Act was introduced in February of this year, Steve relentlessly led the charge toward passage, engaging his huge social media following and partnering with many other advocacy groups, including the Center for Medicare Advocacy. The U.S. Senate passed the Steve Gleason Act unanimously on April 22nd. The House Ways and Means Committee unanimously approved it last month. Today, with passage by the full House of Representatives, the Steve Gleason Act makes its way to the President’s desk for signature into law. Medicare will again allow SGD users to communicate.
Some heroes come in the form of scrappy, athletically talented NFL players. Some heroes come in the form of role-models who lead with their eyes and a tenacious spirit. And sometimes, those heroes are one and the same.
Thank you for your leadership, Steve Gleason.