ALS Advocacy

ALS Advocacy
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, November 10, 2014

Finally, A Pearl

There are a few people who get a case of ALS rage after helping a loved one through the difficult journey.  Nothing is easy with ALS, and it is an outrageous disease.

One such person fights relentlessly on behalf of those with ALS.  It's not her job.  It's her passion.  She is quiet about what she does.  She knows who she is.

She's the one who first pointed out the change in Medicare CMS administration of Speech Generating Devices that was a disaster for those with ALS.  When told by organizations that they had it covered, she kept pressing.  When told by professionals that these things take time, she pushed and prodded because time is the one thing that those with ALS don't have.  When one advocacy organization sloughed her off or offered feckless statements, she pressed others.  When told to stand down, she stood up and fought.

She was an irritant to many.  Too bad.  You can't be afraid to irritate a few on the way to fixing a
problem for those with ALS.

Last week, all of that irritation resulted in a pearl.

As she said to me last week, "It's so rare to have positive news."  Amen.  Finally people with ALS got some positive news with the announcement from Medicare CMS that the Speech Generating Device rules were being fixed.  Were it not for that one advocate who pushed and prodded and irritated and found individuals who could be effective, I'm sure we would still be in the bureaucratic morass.

Here's an article on the announcement.

And you can see that there is more to do.

Special thanks to this remarkable advocate and to Team Gleason and the Center for Medicare Advocacy and the other amazing irritants who joined forces.

It was a pearl of a week.  Finally.

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