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.

Saturday, April 29, 2017

Why?

Obviously I'm interested in ALS advocacy issues.

I read a lot and try to study them.  Our voices are important as are our ideas, and I believe that we can make a positive difference.

Every year I go the the ALSA ALS Advocacy Conference and Day on Capitol Hill.  I pay the fee and pay my own expenses.

In an email yesterday, I received a nice invitation:


I requested to join on facebook and was accepted. Nice.  I liked the idea of this new dimension to Advocacy Day preparation and discussion.

This morning I submitted four items to post.  Evidently, everything is moderated, so all were pending moderation when I signed off of facebook this morning.

Thank you for providing this area.  It’s a nice addition to let us all discuss substance that has been difficult with the format of the conference over the past few years.  We are all more than just our stories and I feel strongly that policies and our voices and thoughts matter. 
I have three topics related to the Registry that I will post and I hope they will be part of the discussion.
Thank you.
__________

1/3  Last summer’s annual Registry meeting at the CDC was blacked out.  All we have is an “executive summary” report that is not at all substantive.  When I inquired months ago about getting a detailed report, Dr. Mehta said that there would be a recording of the proceedings posted.  When I inquired of ATSDR about an ETA for the detailed proceedings, I got the unhelpful response, “When it’s ready.”

https://wwwn.cdc.gov/als/ALSReportsNew.aspx
 
We are being told to request another $10,000,000 for the project without any substance on who was invited to that meeting, what was discussed, what problems were (or were not) addressed, and what direction the leadership is taking the project.   How can we be responsible advocates without having that information?
__________


2/3  We have never seen a businesslike accounting of how ATSDR spends $10,000,000 per year on the Registry.  One year after we pressed the issue, we got a vague set of percentages in some Powerpoint pie charts at the Advocacy Conference.  It’s not unreasonable for us advocates to know how that budget was or will be spent, in dollar categories (like any good budget analyst would supply).
 
As a friend once said in a motherly way, “I’m not giving you another $10,000,000 until you tell me what you did with the last $10,000,000.”  
__________

3/3  What is the cumulative total that has been appropriated for the Registry over the many years, starting with the so-called building-block appropriations that happened in the years before the 2008 passage of the ALS Registry Act. 
We advocates can’t make good cost/value assessments without having a good handle on the costs. 
__________

This evening I find myself locked out of the group.  I can only assume that my discussion points were never posted.

Perhaps the group is to stick to dinner plans and not substance?

Why, oh, why would you stifle polite, informed discussion on something this important?

Why?






1 comment:

  1. All extremely pertinent and valuable questions that everyone should want answered. Hard to comprehend why a community manager for the FB group would pick and choose who could be involved as long as you were within the posted terms of posting unless they are trying to suppress conversation within the ALS Community. The ALS Community: Patients, Advocates and Familes win when there is transparency.

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