“When a person is diagnosed with ALS, or amyotrophic lateral sclerosis, he is expected to fade away quietly and die. This is not okay.”
In 2015, Congress overwhelmingly approved a bill that made sweeping changes to Medicare. Included in the bill: a provision to no longer fund the purchase of speech-generating devices, or SGDs.
Calling it a “human rights violation,” advocates including Steve Gleason and his mother, Gail Gleason, together with the support of the ALS community, fought to have the provision overturned. They moved quickly, and despite being told there was little chance for success, petitioned Congress with stories of courage…and of hope.
The Steve Gleason Act
Himself diagnosed with ALS, Gleason has become an outspoken advocate for those with ALS and an ardent supporter of SGDs.
Together with the ALS community, the Gleasons' work to overturn the cut in funding resulted in the introduction of a bill that would restore funding. The bill was named in honor of the former New Orleans Saints player, who helped propel the team to victory over the Atlanta Falcons in the 2006 Super Bowl.
“People, like myself, who are literally voiceless, were heard. Loud and clear.”
Their hard work paid off, and with a simple voice vote the Senate approved The Steve Gleason Act, making SGDs available to individuals who need them. On July 20, 2015, then-President Barack Obama signed The Steve Gleason Act into law.
The Gleason Act in 2017
Fast-forward to 2017, and The Gleason Act is set to expire in 2018.
However, a bipartisan bill has been introduced once again, this time to make The Gleason Act permanent.
Called The Steve Gleason Enduring Voices Act, the legislation looks to:
- Make permanent the valuable changes made by the Steve Gleason Act of 2015.
- Allow Medicare payment for communication devices.
- Maintain the payment category for these personalized devices and lets people keep them for as long as they need them, regardless of care setting.
- Provide coverage for the accessories needed to allow the devices to work effectively.
Passage of the Steve Gleason Enduring Voices Act is essential. To help:
The American Speech-Hearing Association (ASHA) is also working to help pass the bill.
The Center for Medicare Advocacy is also working for passage.
Learn more about the history of The Gleason Act, and Steve Gleason:
- 2017: Gleason Act set to expire gets new life
- 2015: Former NFL player with ALS uses his eyes to type and technology to speak
- 2015: U.S. House passes Steve Gleason Act
- 2015: The Steve Gleason Act
- 2015: The Steve Gleason Act: A Triumph For The ALS Community
- 2015: President Obama signs Steve Gleason Act into law
- 2015: Senate approves 'Steve Gleason Act' to give more access to speech generating devices
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