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.

Thursday, December 11, 2014

The Ears Can Be Deceiving

If you've ever been owned by a Basset Hound, you know that the big ears can be deceiving.  Bassets aren't always the greatest listeners.  Why the big ears?  They're more about stirring up the scent for their noses to track things than actually to listen (especially to listen to their human beings who sometimes have things to say that are inconvenient to hear).  I love my hound but am realistic that's she's smart when she wants to be.  And listening isn't her forte.

We're at that time of year when the ALS Association is conducting its "listening tour" for public policy priorities for next year.  It consists of an email sent to chapters that has not changed a lot over the years. Chapters have a short due date to reply to the email with their three priority picks.  That's it.  Some chapters reach out to people with ALS and caregivers and their chapter benefactors.  Others don't.  They pick three and reply.  It's traditional.

Below is some text from this year's email.  In 2014 we have some wonderful social media tools that would cast the nets more broadly and generate some energy and ideas beyond pick-three.  They would make it much easier for everyone truly to listen.  Ah, the same tools that were so effective for engaging people to dump ice and be interested in ALS in August would also work for them to hear and be heard in December.


The ALS Association Public Policy Department is currently in the process of working with local chapters to identify the issues most important to the ALS community nationwide.  Feedback received will help to inform our 2015 public policy priorities.  Please take a few minutes to review the following public policy issues.  I’ve included links for ease of finding information on the topic. 
Afterwards, we ask that you IDENTIFY and RANK your top THREE public policy issues and submit your responses to us by email.  You may reply directly to this email.  We need all responses by Monday, December 15.  Thank you for your participation!
Public Policy Issues
  • MODDERN Cures Act
  • PDUFA implementation
  • Compassionate use programs
  • Drug development and approval process
  • “Right to Try”
2.      Health Care Reform Issue may include:
  • Ensure key provisions of health reform enacted in 2010 remain law, including:
    • Closing the Medicare prescription drug benefit coverage gap
    • Eliminating preexisting condition exclusions
    • Eliminating lifetime and annual caps on health insurance coverage
  • Promote respite care and respite care funding
  • Implement the CLASS Act, legislation included in health care reform enacted into law in 2010 that establishes a national program to enable people to purchase long term care services
  • Provide Medicare and private coverage of in-home custodial care services and home health aides
  • Change Medicare’s homebound requirements
  • Reimburse/health benefits to family caregivers
  • Establish caregiving tax credits separate from the deduction for medical expenses
4.      General Medicare Issue may include:
  • Eliminate therapy caps and/or extend the process to receive an exception to caps on coverage
  • Streamline and speed processing of claims
  • Improve coverage of Durable Medical Equipment
  • Provide Medicare coverage for iPads, iPhones and other similar devices
  • Oppose implementation of/repeal Competitive Bidding for DME in Medicare
5.      Medicare Prescription Drug Benefit (Medicare Part D) Issue may include:
  • Implement provisions of health reform enacted in 2010 that eliminate the coverage gap
  • Ensure Medicare coverage of specific prescription drugs (Rilutek is currently covered)
  • Ensure Medicare coverage of drugs prescribed off label
  • Limit the use of utilization management tools such cost sharing, tiering, therapeutic/generic substitutions, quantity limits and other policies of Medicare prescription drug plans
6.      National ALS Registry Issue may include:
  • National Office to continue support Chapter outreach and enrollment activities by providing materials, equipment, education and training
  • Continued funding for the National ALS Registry
  • Expand the number of surveys in the registry
  • Encourage research use of the registry
  • ­Continued funding for ALS research or policies and programs that advance ALS research at:
    • the ALS Research Program at the Department of Defense
    • the National Institutes of Health
    • the Food and Drug Administration
    • the Department of Veterans Affairs
    • the Centers for Disease Control and Prevention
  • Stem cell research including expediting human trials
8.      Speech Generating Devices Issue may include:
  • Ensure access to non-speech functions such as email, internet access and environmental controls
  • Capped rental
  • Eye-gaze technology
  • Eliminate the 5-month waiting period
  • Eliminate the “20-40 rule” under which a person with ALS must have worked five of the previous 10 years in order to qualify for SSDI
10.    Veterans Issue may include:
  • Assistance navigating/accessing VA benefits
  • Change functional criteria and other elements of the adaptive housing grant process
  • Establish a formal process to expedite claims
  • Develop partnerships with VA for clinical care
  • Increase grants for adaptive housing and accessible vehicles

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