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.

Thursday, November 5, 2015

There Really Is Educational TV

Last night Charlie Rose featured a segment with Dr. Collins of the NIH and then another with PALS Jay Fishman and Dr. Rothstein.  It was late.  After a few hours of sleep, a few very random thoughts are stuck in my mind.

  • NIH funding is precious.
  • Why were NIH funds needed for this new report?  ATSDR has generous funding for the Registry.
  • The delay to diagnosis for ALS is outrageous.  Charlie Rose grasped it.  Jay Fishman lived it.  Dr. Rothstein didn't want to cast aspersions on the fellow physicians who fail to diagnose it. That delay to diagnosis is costly in many ways, and the patient is the one who pays the price, yet we give physicians a professional free pass when they miss it, and they often miss it.
  • The ALS Ice Bucket Challenge missed opportunities.
  • We need better accounting and accountability in the fight against ALS.
  • Money won't cure a disease that is short on new ideas.
  • The cure isn't "around the corner."  I took that to mean that Dr. Rothstein has no impending  treatment for Mr. Fishman.  I appreciated the candor.
  • Too bad the conversation didn't then jump on shortening "the corner" by getting experimental drugs to PALS much more quickly.
  • Charlie Rose is on too late in my city. 
  • Jay Fishman has an attitude that reminds me of my mother when she faced ALS.

We need to have more serious conversations and more action to change the status quo.  Thanks, Mr. Fishman.

No comments:

Post a Comment