Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Monday, May 11, 2015

We Need To Put The Sign Back Where It Belongs


A year ago we talked to legislators about some Medicare rules being implemented that were a crazy trip back to 1980.  They were denying people with ALS access to modern, economical technology related to speech generating devices.  When we talked to legislators and staff members, they were 100 percent in agreement that the rules were antiquated and wrong.

That was a full year ago.  There has been lots of talk and there have been band-aids, but we learned that we need a law.  The buck can't stop where it belongs for Medicare recipients unless we make a law.  Today people with ALS are denied or lose the very devices that let them be productive and engaged parents, citizens, and patients.

Enter a small charity that couldn't let those people with ALS lose the purpose, productivity, and joy
that the simple ability to communicate provides.  They let the buck stop with them because the need is vital.  In fact, they have spent over $1.4 million bucks in the last few months supplying enabled devices to people with ALS that Medicare should have been providing.  Perhaps the fact that this organization is led by a young man with ALS who uses this very technology is the reason he decided to help in a substantive way... rather than pass the buck.

Charitable contributions should not be expected to cover for a broken government rule.  Government should not be allowed to pass the buck.

But we need a law. Now.

Please write your Member of Congress. Today.  Demand quick support of the Steve Gleason Act.  Here is information and a convenient tool to submit your thoughts --

In an ultimate twist of irony, President Johnson signed Medicare and CMS into existence at the Truman Library in 1965.  They should have paid more attention to the sign while they were there.

1 comment:

  1. The Steve Gleason Foundation and small ALS Guardian Angels Foundation have stepped up to fill dire need