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.

Friday, March 21, 2014

Are We Just April Fools Who Can't See All The Danger Around Us?

An ALS volunteer-advocate literally stumbled across things that we described in our prior two blog
entries earlier this week.

Here is our recap of concerns along with a couple of action items.

Effective April 1, 2014, the Medicare CMS rules for Speech Generating Devices (SGDs) are changing.  They are being classified as durable medical equipment that will fall under a “capped rental rule.”  The taxpayer in me didn’t get too upset until we found out some of the implications.  Medical devices will be rented for 13 months.  Here are some of the gotchas that we think are of concern.  If I’m wrong on any of these, I’m all ears.

  • The kinds of device and technology such as the setup Steve Gleason had in the Super Bowl ad will not be allowed because they are not strictly medical devices.  God forbid that you should access the internet. 
  • It’s a one-and-done for you.  If you live long enough for some stellar new $500 technology to make your 13-month device obsolete, too bad. 
  • If you go into a hospital or move into a hospice during the 13 months, your device will not go with you.  CMS assumes that the facility will have whatever you need.  Right.
There was a comments period to give feedback to Medicare CMS on the rules changes last year.  I had no idea.  Unfortunately we didn’t get in front of the rule changes.
Here are a couple of action items that I’m aware of.  If anyone knows of any others, please let us know.

Action 1.       There is a petition sponsored by the AAC Institute that is trying to gather signatures to object to the rule change.  It explains things well.  I hope that you will consider adding your names and spreading the word.  https://www.change.org/petitions/congress-white-house-centers-for-medicare-and-medicaid-services-request-that-speech-generating-devices-sgds-are-exempt-from-all-rental-requirements-and-remove-sgds-from-the-capped-rental-rule-that-takes-effect-april-1-2014?recruiter=86717921&utm_campaign=mailto_link&utm_medium=email&utm_source=share_petition

Action 2.       There is some proposed legislation that could move Speech Generating Devices as well as Power Wheel Chairs out from Medicare’s "durable medical equipment" rules (thus escaping the April 4 rule change).  This complex medical equipment that is highly technical and personalized just doesn’t fit rules written for bedpans and commodes.  The MS Society has excellent information on this and they have an action page to submit requests to your legislators.  I their letter can be changed easily to make it about ALS (with thanks to the MS Society for being on top of the issue).  I submitted one to my Representative and Senators.  Here is the link http://www.nationalmssociety.org/Get-Involved/Advocate-for-Change/Current-Advocacy-Issues/Complex-Rehab-Technology

Some really good ALS volunteer-advocates have been trying to sort through what seems to us to be an urgent issue.  Thanks if you would review those two action items above and chime in by submitting support and asking your friends and family to do likewise.

And if you know more or different information about the issue, we would appreciate the insights.

ALS Hope Foundation has been supportive of the concerns.  Team Gleason added support to the legislation item last evening. We’ve not heard a peep from any other ALS organizations. If any had actually submitted any comments to CMS or legislators on this issue, it would be helpful if they would simply post them.

Some Cain-raising by us all is long overdue.  Thanks.


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