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.

Tuesday, December 17, 2013

We Got Plenty Of Nothing



When will there be a candid, honest discussion of the CDC's ALS Registry?  Was there one at the annual meeting in July?  Is anyone looking seriously at the scope, deliverables, and effectiveness of the very expensive project?  Is there a valid reason for the cloak of secrecy?  Really?

Following is the item in a recent advocacy "listening" survey (click here) (thanks to the chapter that shared) related to the ALS Registry:


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.)
   
 1st /2nd/3rd/Not a top priority this year



A single tick (or not) doesn't address the considerable concerns that many of us have --

  • What are the deliverables that ALSA and now MDA deliver to earn the millions that they have been granted in contracts? 
  • What are the performance standards for those deliverables and have they been met? 
  • Is anybody bothered by the lack of transparency over these contracts that advocates stumbled upon quite by accident? 
  • What is the uptake on self-enrollment? 
  • Who is questioning the scope-creep of this project? 
  • Are the risk-factor surveys eliciting sufficient response to be statistically meaningful? 
  • Who attended the annual meeting in July? What was discussed? Was anything challenged?
  • How do we proceed and best deploy resources to make this project effective?
So far we have plenty of nothing for tens of millions of dollars.  No answers.  No meaningful status information.  No sign of responsible project management.  No transparency from organizations that were given substantial, non-competitive contracts.

Nothing is not plenty for us.

2 comments: