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.

Monday, May 5, 2014


That's the best title I can come up with for a post I never expected to have to write.

Last year some of us stumbled across some large no-bid government contracts given to ALSA and then to MDA from the CDC ATSDR ALS Registry funding.  The MDA's contract appeared in September and the amount, $2,695,642, floored some of us.

On October 18 I emailed a question directly to the head of the project at ATSDR who is a frequent speaker to groups on the Registry project.

Dr. Horton, Are you able to tell me what MDA is doing for this sum, please?  
I have a bad case of sticker shock.  
Thanks very much for any insights.

On October 21, I received a reply from Abby Martin of the CDC.
Neither Mr. Horton or I have the authority to respond to requests for public information not in the public domain.  (This includes any request for information via social media.)  All such requests should be directed to the CDC/ATSDR Freedom of Information Officer for a response 
Okeydokey.  I learned how to submit a Freedom of Information Act request.  The following two requests were submitted and accepted on October 22.

Request 1 I would like to know what the work product, deliverables, and performance standards are for the work in the MDA contract for “ALS Outreach and Education Activities to Support the National ALS Registry.”

Contract Award Number:
Contract Award Dollar Amount:

Request 2 I would like to know what the work product, deliverables, and performance standards are for the work in the ALS Association contract for “Education and Outreach for the National ALS Registry.”

Dollars Obligated
Current Contract Value
Identifying Agency ID
Procurement Instrument Number
Modification Number
Transaction Number
Fiscal Year
IDV Agency ID
IDV Procurement Instrument ID
IDV Modification Number
Solicitation ID

There is a nice online status tool that they provide to track the status of your request.  The status of both requests went from and initial  "Pending Program Search" to "Pending Final Review" within a few weeks.  Great!  I honestly expected to have answers by the end of the year.  Silly me.

By January 23, I felt that surely something had gotten lost somewhere in the "Final Review."  I emailed the CDC FOIA officer who had helped me with the requests.

The online status for both of these has been “pending final review” for over two months. Is there a way to check to make sure that something didn’t get lost in the process? Thanks very much for your help.  
I immediately got a reply that floored me again.

This is in response to the email below concerning your Centers for Disease Control and Prevention and Agency for Toxic Substances and Disease Registry (CDC/ATSDR) Freedom of Information Act (FOIA) requests #14-00039 and 14-00043.
 As we advised in our acknowledgement letters dated October 22, 2013, CDC processes all FOIA requests on a first-in, first-out basis, which is the court-approved method for agencies operating under a backlog. Program staff have completed their search for the records you requested, and your case is currently in this office awaiting final review. A thorough document review will be conducted by the CDC FOIA staff, and all releasable records will be provided. Processing time is contingent upon the number of requests ahead of yours and their complexity and volume. Therefore, we are unable to give you an exact timeframe for completion of your request but estimate that it may take up to 36 months for your request to rise to the top of the complex queue based on current workloads. Please be assured, however, that a response will be sent to you as quickly as possible.
 You may continue to check on the status of your case by going to our FOIA webpage at and entering your request number. The fiscal year is the first two numbers and the request ID is the second set of numbers.

Hmmmmm.  Why is this so hard?  Thirty-six months?  Does someone not want to talk about this?

My response, still on January 23, was --
I appreciate the insights.With matters ALS, the clock ticks quickly.  One of the advocates who was interested in the information has died already.I’ll keep watching the status and hope that it finds the top soon.Thanks.  Have a good afternoon.

The status is still "Pending Final Review."  That must be some fancy review.

This started as a very simple question.  The answer should be pretty simple.  It just gets curiouser and curiouser when people make everything difficult.  This is information that should be very transparent, especially since the contracts required no bidding and since we advocates go to our legislators to ask for the project's funding every year.

It should be simple, but it's not.  Such is the way with matters ALS.


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