The Steve Gleason Act

July 15, 2015

Last year sweeping changes were made at Medicare. I was shocked to learn that those changes would include Medicare stripping communication devices (SGDs) from people whose only means of communication was those very devices. In a Washington Post op-ed, I called it a human rights violation.

We saw it happen far too many times. People who wished to live productively, denied access to the one tool that could liberate them. 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 VitterCongresswoman Cathy McMorris RodgersCongressman Erik PaulsenCongressman 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.

‪#‎NoWhiteFlags‬ ‪#‎NotQuietly‬

– Steve Gleason