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, June 20, 2013

Time To Raise The Lid And Smell The Cooking?

[If you've not read the June 15 post, please give it a quick scan for some background first.]

The national ALS registry concept was an easy case to make.  Take a look at if you're not familiar with the need and the history.

We fight hard every year for taxpayer dollars that will let the CDC's Agency for Toxic Substances & Disease Registry (ATSDR) develop its ALS Registry well.  You'll not find ALS advocates getting stingy over such an important project.  They go to great personal expense to get ATSDR what ALSA says it needs.

Here's the recipe.

  • ALS advocates get ALSA's legislative priorities in the first quarter of every year.  Those legislative priorities include continuing funding for ATSDR for the ALS Registry.  ALSA presents us with the number.  This year and last, the requested number was $10 million per year.
  • ALSA has an advocacy fly-in during the first quarter of the year for invited advocates and ALSA employees to promote the priorities with legislators.
  • In May all advocates who are able to make the trip and pay the fees and travel expenses are invited to a bigger Advocacy Day to call on legislators.  Many ALSA employees also make the trip at the expense of their donors as part of their jobs.  Some people with ALS may be assisted by their chapters' benefactors or by other not-for-profits to help with travel expenses.  This year, under the guidance of ALSA, we advocates asked legislators for another $10 million for ATSDR to continue the ALS Registry project.  Here's a recent ALSA pitch.  
  • Annually there is an invitation-only meeting of a committee that gives input to ATSDR on the Registry project.  The public is not informed of the meeting in advance.  The minutes of the meeting come out long after the meeting, and the minutes reflect a group very happy with the project.  There is little critical discussion.  Nobody's feet are held to any fires.  Expenses are not reviewed.  You can see for yourself here.  The list of 2012 participants is at the end of the document.  You'll see that ALSA, MDA, and the CDC and ATSDR and its contractors are very well represented.  There is only one ALS patient on the list of whom I'm aware, and he died shortly after the meeting.

That's it.  We sing for ATSDR's supper every year and we work hard so that they have the generous funding that they and ALSA say they need.

I was flabbergasted when I found this the other day at

Then when I downloaded the data, I became even more concerned.

Has ALSA been the recipient of large, no-bid, noncompetitive contracts out of the generous funds they had us request for ATSDR?

Was this ever mentioned to us -- the advocates who pitched hard for them for their suggested funding level for the Registry?

Has the ALSA-ATSDR relationship become too cozy?

This at best smells bad.

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