Former Saints safety Steve Gleason has been living with ALS since 2011 and his life has been made fuller by the availability of technology that helps him communicate despite the disease taking away his ability to speak.
When changes were made to Medicare last year, those devices were no longer covered and Gleason began work to rally support in Congress to make sure that speech generating devices would be available to all who need them. That led to the Steve Gleason Act, which the House of Representatives passed on Wednesday. The bill had already passed in the Senate and now moves to President Obama, who can sign it into law.
Gleason, who called the Medicare changes a “human rights violation” in a Washington Post op-ed, thanked legislators and other activists for their work in getting the bill passed.
“We saw it happen far too many times. People who wished to live productively denied access to the one tool that could liberate them,” Gleason said in a statement. “People in hospice, who had their SGDs seized, so their last words to their loved ones were mere silence. Thankfully, legislative leaders like Senator David Vitter, Congresswoman Cathy McMorris Rodgers, Congressman Erik Paulsen, Congressman Steve Scalise and many others, saw this tragedy and they intervened. These leaders stepped up on behalf of those who couldn’t take action themselves.
“At the time, the Steve Gleason Act seemed like a long shot. It was given only a 2% chance of passing, but the ALS community never waved the white flag. That was not an option. With help from this extraordinary ALS community of patients and caregivers, as well as advocates like The Center for Medicare Advocacy, we made some noise. A lot of noise. People, like myself, who are literally voiceless, were heard. Loud and clear. This legislation may have my name on it, but please know it is the ALS community and the diligent legislators who deserve our applause.”
Gleason was a hero in New Orleans because of his blocked punt in the team’s first game back at the Superdome after Hurricane Katrina ravaged the city in 2005. His work on behalf of those suffering from ALS and other neuromuscular conditions has made him a deserving one well outside the city’s boundaries.