Friday, January 6, 2012

Perhaps 2012 Will Force Some New Dimensions to "ALS Advocacy"

There are some interesting things bubbling that may move ALS organizations to break out of their ruts.
  1. There is an ethics issue that would be wrong to ignore.
  2. We spend millions on an national U.S. ALS Registry, yet are patients really self-enrolling? Why not? Mission not accomplished.
  3. Studies and organizations have touted ALS multidisciplinary clinics as providing clearly better outcomes for people with ALS, yet our veterans with service-related ALS are not provided with multidisciplinary clinics by the VA. What is wrong with this picture?
  4. Newly diagnosed ALS patients report vastly different experiences in clinical trial recommendations from their neurologists. Some encourage, some discourage, some seem clueless.
  5. ALS is still the best-kept-secret killer disease.
Sleepy won't expect miracles regarding number 5 (it's not new) but expects that the first four will boil to the point that our ALS organizations will need to step up and do some new things. Same old same old won't cut the mustard in 2012.

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