Last month at the July 15th IACC meeting, it was announced – once again – that an IACC workgroup, in this case the Strategic Planning Implementation Workgroup would convene behind closed doors away from the public eye.  These are the members of the Workgroup:

• National Institutes of Health
• Centers for Disease Control and Prevention
• Autism Speaks
• Department of Defense
• The Simons Foundation
• Autism Research Institute
• Autism Consortium
• Organization for Autism Research
• Health Resources and Services Administration
• Centers for Medicare and Medicaid Services
• Southwest Autism Research and Resource Center
• Department of Education Staff

In response to this obvious attempt to hinder public participation on the matter, I stressed to the IACC during the public comment session it was our intent to work closely with the Subcommittee on Investigations and Oversight in pressing for openness and transparency as the process to develop and implement the SP moved forward. Read about the Subcommittee’s letter to Secretary Leavitt (HERE).

A few weeks later, On Wednesday, July 30th, a notice was submitted to the Federal Register announcing that the Workgroup meeting would “be closed to the public with attendance limited to invited participants” and further stated “the purpose of the workgroup meeting is to discuss future granting opportunities and budgetary requirements for the IACC Strategic Plan for Autism Spectrum Disorder (ASD) Research.” The following day, Thursday July 31st, the notice appeared in the Federal Register:

[Federal Register: July 31, 2008 (Volume 73, Number 148)]
[Notices]               

The workgroup meeting will be closed to the public with attendance limited to invited participants.

The purpose of the workgroup meeting is to discuss future granting opportunities and budgetary requirements for the IACC Strategic Plan for Autism Spectrum Disorder (ASD) Research.
   
Agenda: Review of budgetary requirements and funding opportunities for the IACC Strategic Plan for ASD Research.

Jennifer Spaeth,
Director, Office of Federal Advisory Committee Policy.
[FR Doc. E8-17513 Filed 7-30-08; 8:45 am]

But, then something unusual happened; sometime between Thursday, July 31st and Tuesday, August 5th, officials at the National Institutes of Mental Health (NIMH) decided to reverse course and make the meeting public. 

Generation Rescue learned of the reversal, not from the Federal Register but through a private e-mail exchange with NIMH Director Tom Insel on Tuesday morning.  In the e-mail, he provided a public access number and webinar information for the upcoming Friday, August 8th meeting. 

Several hours later, I went to the Federal Register to see if the new information was available to the public but the “closed” notice from July 31st was still the most current listing available.  When I realized the discrepancy early Tuesday evening, I immediately advised Dr. Insel I would submit the information to Age of Autism in an effort to inform the public and the autism community of the open meeting since the Federal Register did not accurately reflect the changed status.

Two days later on Thursday, August 7th , the National Institutes of Health (NIH) list-serve sent out a “correction” e-mail notification to its members several hours after the information was posted on the Age of Autism.  In addition, a notice was submitted to the Federal Register that same morning announcing a “change in the meeting” of the Strategic Planning Implementation Workgroup stating it would “now be accessible to the public.” Unfortunately, the Federal Register did not post the correction until the morning of the meeting, Friday, August 8th: 

[Federal Register: August 8, 2008 (Volume 73, Number 154)]
[Notices]
Notice is hereby given of a change in the meeting of the Strategic Planning Implementation Workgroup organized by the Interagency Autism Coordinating Committee (IACC).

Notice of this workgroup meeting was published in the Federal Register on July 31, 2008.

Audio of this workgroup meeting will now be accessible to the public via a teleconference phone link and there will be Web-based access to information displayed at the meeting via computer/projector.  Attendance at the meeting will be limited due to space available.
   
The purpose of the workgroup meeting is to discuss future budgetary requirements for the IACC Strategic Plan for Autism Spectrum Disorder (ASD) Research.

Jennifer Spaeth,
Director, Office of Federal Advisory Committee Policy.
[FR Doc. E8-18245 Filed 8-7-08; 8:45 am]

Of course, it was too late for members of the public to attend in person unless they had read about it on Age of Autism or received an e-mail directly from NIH the previous day.

At the end of the meeting on Friday, I had an opportunity to chat with Dr. Insel who told me the initial Federal Register notice was “accidently advertised as closed” and the corrected version didn’t get posted until that same morning.  Hmmmmm…..

Once the meeting was over and I had time to think about the sequence of events and looked more closely at the Federal Register notices, I discovered a few discrepancies in the official explanation for this sudden burst of renewed openness and transparency on the part of government officials.  Four in particular stood out:

1.   Meetings are open by default.  In other words, it takes additional paperwork to deviate from the norm and close a meeting so why would someone go through the extra step to make sure a meeting was closed unless specifically instructed to do so?

2.   The decision to open the meeting was known and the call-in details disseminated early Tuesday morning, so why did officials wait until two days later to submit the change to the Federal Register?   

3.  Why would the “purpose” of the meeting change if the correction notice was issued to reverse the closing of the meeting as we were told?  If you look at the initial notice, the purpose stating “future funding/granting opportunities” is gone. Additionally, the whole agenda line from the initial notice is missing as well. 

4.  In the initial notice the “agenda” specifically states a “review of budgetary requirements and funding opportunities…”  Wouldn’t the use of the word “review” imply there is already something there to look over?  And if that’s the case, the document would have originated somewhere behind closed doors which would bring up the next question: Who devised it since technically the Strategic Planning Implementation Workgroup hadn’t even met yet?

As much as I’d like to believe this reversal to include the public is a genuine attempt to make this important process more open and transparent, you’ll have to excuse me if I’m a bit reluctant to accept sudden goodwill as the sole basis for all the back-peddling done during the last few weeks; especially regarding a process that has been wrought with lack of transparency and conflicts of interest issues since it’s inception over a year ago.   

My guess is the following meeting was the real motivator behind the flurry of activity:   

On Thursday, July 31st, the Subcommittee on Investigations and Oversight met with officials from FACA, HHS, and NIMH for approximately 3.5 hours to discuss process and conflicts of interest issues associated with the IACC.  Two business days later, the meeting was opened, the purpose was modified and officials were on alert that a Congressional Committee was committed to ensuring an open and transparent process in the formation and implementation of the important research agenda which will decide how to spend approximately 640 million dollars on autism research over the next five years.

It appears that the people running the IACC learned that they needed to open up a process that they had repeatedly tried to close. That raises additional troubling questions. What else have they managed to keep closed about this process? What are they trying to keep away from the public eye?
   
Kelli Ann Davis is the D.C. Political Liaison for Generation Rescue.