Passage of the Steve Gleason Act to Make Life Easier for ALS Patients

Passage of the Steve Gleason Act to Make Life Easier for ALS Patients
General Health

Life is about to get a little bit easier for people with ALS, thanks to the Steve Gleason Act, which was signed into law by President Obama recently.

Named after the former New Orleans Saints special-teams standout, the act will make vital technology available to ALS patients through Medicaid and Medicare including speech-generating devices that are controlled through eye movements. [1]

Steve Gleason was diagnosed with ALS in 2011 and became a crusader for people with the disease and other neuromuscular disorders. The Team Gleason foundation was the driving force behind the law, ESPN reported July 31.

Gleason sought Microsoft’s help last year in creating a way for him to drive his power chair with his eyes. This week, the software giant unveiled the technology. It’s not yet on the market, but Gleason described the new technology as “liberating.” [1]

ALS slowly paralyzes people, robbing them of their ability to walk, talk, eat, and eventually breathe. Speech-generating devices (SGDs) are critical to helping ALS patients continue to communicate with friends and loved ones and, as Microsoft’s new driving technology shows, maintain their independence for as long as possible.

Read: Ice Bucket Challenge? ALS Foundations Don’t Exactly Fund ‘Cures’

The push for the passage of the Steve Gleason Act was sparked by a rule change last year in a reimbursement policy under Medicare and Medicaid that denied ALS patients access to SGDs – a move Gleason called a “human rights violation.”

Gleason worked with Senator David Vitter, Congresswoman Cathy McMorris Rodgers, Congressman Erik Paulsen, Congressman Steve Scalise and other members of Congress to introduce a bill that would overturn that policy.

“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,” Steve Gleason said in a statement. “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.” [2]

Senator David Vitter said:

“NO WHITE FLAGS! The Steve Gleason Act is official, the law of the land. The President signed my bill this evening. Congrats to Steve and Team Gleason for your tireless, inspirational efforts to get this across the goal line.”

Steve Gleason played for the Saints from 2000 to 2008. Before the passage of the act, Gleason was most famous for a blocking punt against the Atlanta Falcons in a 2006 homecoming game at the Superdome after Hurricane Katrina. [3]

[1] ESPN

[2] Huffington Post

[3] Fox Sports