"The law and its regulations provide detailed rules for creating and operating official committees that advise the federal government.  These rules include special requirements for balancing committee memberships, conducting open meetings, and keeping detailed records. These rules are designed to limit the influence (at least the behind-the-scenes influence) of special interest groups on federal agencies and the president." 

FACA Committee Composition:

"The committee also has to be set up to assure that the advice and recommendations that it gives are not inappropriately influenced by either the agency or by any special interest.”

• One of the four science workshop chairs who were instrumental in establishing the foundational core areas in the strategic plan (SP) was a paid expert witness for the government in vaccine court and should have been disqualified due to her conflicts of interest.

• The appointment of Joyce Chung (wife of legendary epidemic-denier Roy Grinker) as Head of the Autism Team should not have occurred due to her conflicts of interest based on her husband's openly public dismissal of environmental factors as a contributory cause of autism.

• Abrogation of IACC's obligation to make key decisions to an internal bureaucracy was undermined by the Autism Team in multiple instances. 

• The IACC did not appoint the members to the four science workshops; rather the Autism Team (made up entirely of government officials) made the selections.

• Strategic Planning Work Group (SPWG) 1.0 was not appointed by IACC; rather the Autism Team (made up entirely of government officials) made the selections.

• SPWG 1.0, 2.0, and 3.0 failed the "diversity " and "balance" tests in part because financial limitations ("ability to pay to play") were used as factors in determining membership. 

• "Community" participation of SPWG 3.0 (which was tasked to make crucial decisions regarding funding priorities and specific initiatives) was limited to organizations and interests that were already privately funding autism research -- especially relating to genetics -- and was selected in advance by the Autism Team; the IACC learned of the composition of this Workgroup in their July 15th meeting where they were also told the Workgroup meeting would be conducted behind closed doors.

• At the four science workshops, genetics was over-represented while several relevant fields were underrepresented including immunology, virology, gastroenterology, toxicology, and clinical care.

• SPWG 2.0 was arbitrarily terminated although it stated its desire to complete and extend its work and some members of IACC supported their request.  No official vote was taken on the decision to disband the group during the public meeting of the IACC and an attempt from some members to access the record of the "secret vote" afterwards was denied. 

Open Process:

"While actual membership on committees is limited, any member of the public is allowed to either speak to the committee or file a written statement with the committee. Most advisory committee meetings, even those held by telephone or by other electronic means, must be open to the public and scheduled at a reasonably accessible location and a convenient time."

• The IACC community members were prohibited from collaborating outside formal meetings.

• The "public comments" from the stakeholders and the general public in January 2008 were not made public.

• Government officials refused to provide background information necessary to SPWG 2.0 so they could carry out their charge and formulate the SP. 

• There was a systematic effort to exclude vaccine-specific research despite repeated public comment and community support that such research was absolutely necessary.

Notice of Meetings:

"In order to allow the public the time to attend meetings, adequate notice must be given. At a minimum, advisory committees must publish notice of all committee meetings in the Federal Register at least 15 calendar days before the meeting occurs. The notice must include the time, date, place, and purpose of the meeting, a summary of the agenda, and the name and phone number of the agency contact person."

• The meeting of SPWG 3.0 was initially described in the Federal Register as "closed" and was only reversed after a 3 1/2 hour meeting between FACA officials, members of the Autism Team, and the Science and Technology Subcommittee on Investigations and Oversight.  The reversal was not listed in the Federal Register until the morning of the event.  (see attachment entitled: NIMH Flip Flops) 

Record Keeping:  

"FACA requires detailed and thorough record keeping in order to keep the public informed and to allow for review of every committee's work. FACA committees must keep detailed minutes of each committee meeting, including any closed meetings, and copies of any documents it uses or issues. The public must have immediate access to all committee records without having to file requests for the documents." 

• Multiple votes and advice from members of the IACC were kept secret from each other and the public during key stages of the process; examples include input on the SP after the July 15, 2008 meeting and the selection process for the composition of the workgroups.

• Research initiatives were submitted by individual IACC members but were not circulated to the full IACC membership for review; they basically were ignored by the Autism Team.

In an effort to address the above violations, multiple autism organizations wrote letters to the appropriate government officials to voice their concerns on what they considered *closed door* decision-making by members of the Autism Team and NIMH Director Tom Insel.  Unfortunately, the letters were ignored and the violations continued.
 
Subcommittee on Investigations and Oversight:

After initially contacting the Science and Technology's Subcommittee on Investigations and Oversight a year earlier in the summer of 2007, GR (along with several other autism organizations) approached the Subcommittee in an effort to stop the trajectory of the SP until the misdeeds of government officials could be addressed properly.  After several months of meetings in which pertinent information was brought to the Subcommittee, they decided to take action: 

• On July 14th, 2008, a letter was issued to HHS Secretary Michael Leavitt reiterating the importance of environmental research and asking him to appoint an Autism Advisory Board (AAB) using the CAA, emerging research and the recent Poling case as a basis for his request. (see attachment entitled: Science and Technology Subcommittee Investigations and Oversight Letter) 

• On July 31, 2008, the Subcommittee conducted a 3 1/2 hour meeting with Jennifer Spaeth, Director of FACA Policy; Della Hann, Autism Team Head and Joyce Chung's replacement; an attorney representing HHS, and a Congressional liaison; multiple violations of FACA were discussed.  
   
Conclusion:

It's apparent by the Subcommittee's involvement on this issue that FACA was violated on several fronts.  Although their involvement is beneficial in "shining a light on federal processes" and puts officials on alert, it's our desire to take advantage of the Subcommittee's probe to initiate a legal case of our own.

Considering the importance of this issue in regards to the IACC directing approximately 650 million dollars over the next five years into autism research, it's absolutely imperative that the foundation for the strategic plan be made in an open, deliberative, and collaborative method in which all stakeholders are fairly represented and the final document (SP) reflects the intentions outlined by Congress in the CAA.

It is my hope that your firm will embrace the importance of this mission and help Generation Rescue hold government officials accountable to FACA and CAA by interjecting your expertise into a seriously compromised and flawed process which, as it stands now, does not provide for the unbiased autism research so many in the community have fought for over the last decade! 

The future of America's children depends on it.

Thanks for your consideration and I look forward to your response.

Kelli Ann Davis
D.C. Political Liaison for Generation Rescue