The (Not) Combating Autism Act in Action
A Clear Biomarker for Autism? – The Question of Alterations in Lipid Metabolism.

Age of Autism on The Interagency Autism Coordinating Committee

Money spiral Since we've run several posts about the IACC recently, We thought we'd provide you with an "at a glance" of many of our posts on the topic over the last year. (Remember, we have a Google search engine on the right sidebar below our ads.)

GRINKER'S STINKER: HIS WIFE RUNS THE IACC
Jan 15, 2008
By JB Handley
Who is Joyce Chung, MD?

According to the National Institutes of Mental Health, she’s the new “Autism Coordinator” and the Executive Secretary of the IACC. Let’s take a quick step back: when you read the acronym “IACC”, if you are anything like me, you wonder, “what the hell is that?”

NIMH Flip-Flops on Pivotal IACC Workgroup Meeting
Aug 25, 2008
By Kelli Ann Davis

Earlier this year, a “closed door” notice in the Federal Register announced an upcoming meeting of “four science workshops” tasked by the Interagency Autism Coordinating Committee (IACC) “to generate research priorities for the Strategic Plan” (SP). (Published by the Office of the Federal Register, National Archives and Records Administration (NARA), the Federal Register is the official daily publication for rules, proposed rules, and notices of Federal agencies and organizations, as well as executive orders and other presidential documents. It is updated daily by 6 a.m. and is published Monday through Friday, except Federal holidays.)

Autism Community Consensus Letter
Dec 11, 2008
By Jim Moody, Esq.The federal Interagency Autism Coordinating Committee (IACC) will meet this Friday, 9-4 at the Neurosciences Center (home of NIMH) in Rockville, Maryland.  This is a continuation of the November 21 meeting because there was not enough time to go through the substantial edits and additions (most of which were submitted by IACC member Lyn Redwood, Safeminds, and broadly supported by the community) required to finalize the Strategic Plan for autism research required by the Combating Autism Act. 

This is a crucial meeting as many of the topics to be discussed will determine whether the research spending will actually matter in in finding the cause and effective treatments for autism. 

IACC Meeting Wednesday to Finalize Federal Autism Research Plan
Jan 14, 2009
Jim Moody
The agenda (HERE) includes final decisions on the content of the Plan and the autism research budget, both of which are required under the Combating Autism Act of 2006.  General information about IACC, including charter, members, and documents can be found on its home page (HERE).

This is a crucial meeting as many of the topics to be discussed will determine whether the research spending will actually make a differencer in finding the cause and effective treatments for autism.  The draft strategic plan (HERE), backgrounddocuments relating to development of the plan (HERE), and the 148 public comments (HERE) received in September can be reviewed online.

Most of the revisions and additions to be discussed will make the plan an aggressive response to the national health emergency presented by the autism epidemic.  The present draft basically continues business as usual and failed to even propose spending the minimum authorized by Congress in the CAA, about $640 million over the next three years.


TACA: IACC Rescinds Vaccine Research Initiatives
Jan 16, 2009
What happened Wednesday January 14, 2009 in Bethesda, Maryland?

In a dramatic turn of events, the National Institute of Mental Health Director Thomas Insel, MD Chairman of the Interagency Autism Coordinating Committee (IACC) called for a vote on a previously voted-on and approved decision to the Strategic Plan of the Combating Autism Act of 2006. December 2008, IACC approved two studies to address vaccine safety as it pertains to autism.  The vote to reverse this previous decision was a surprise to the public members of IACC. It was not listed on the meeting’s agenda. 

National Autism Association on IACC Removal of Vaccine Safety Research
Jan 17, 2009
Washington, DC – In an unprecedented move on Wednesday, the Interagency Autism Coordinating Committee (IACC) removed previously approved vaccine safety research from the Strategic Plan for Autism Research objectives. With apparent backing from the Centers for Disease Control and Prevention (CDC) representation, Committee chair and NIMH director Tom Insel implied that vaccine research conducted by the National Institutes of Health (NIH) would constitute a conflict given the involvement of Health and Human Services with ongoing autism cases filed in federal vaccine court. The committee's action is in direct opposition to the majority of its public members who support vaccine research, and to the Congressional directive of the Combating Autism Act of 2006 (CAA) which specifically called for research into “potential links between vaccines, vaccine components, and autism spectrum disorder.”

Generation Rescue Seeks Legal Advice on IACC Violations
Jan 19, 2009
Generation Rescue consulted with a prominent DC law firm to assess possible legal recourse for multiple violations of the Federal Advisory Committee Act (FACA) committed by the Interagency Autism Coordinating Committee (IACC).  The firm is a public interest law group dedicated to providing high quality legal services and advocacy for non-profit organizations and specializes in FACA and Freedom of Information Act (FOIA) litigation. 

Generation Rescue began seeking legal counsel during the summer of 2008 when it became increasingly apparent that federal officials affiliated with the IACC were in violation of FACA rules (One example NIMH Flip Flops) and attempts to remedy the situation went unheeded despite the direct involvement of the Subcommittee on Investigations and Oversight under the House Science and Technology Committee (HERE).

IACC Insanity
Jan 22, 2009
By Katie Wright

Is IACC a serious autism research committee or a daytime drama? I’m confused. This would be funny if so much were not at stake. The machinations, backstabbing, covert agendas, and secret confabs are reminiscent of 2000 Florida re-count. Sometimes rules and laws apply, other times they do not, secret phone calls, secret meetings, anonymous votes, mysterious re-votes on already settled business, broken promises, probably broken laws…

Katie Wright on IACC, aka "Team Can't Do"
Feb 11, 2009
By Katie Wright

The IACC committee makes an incredibly persuasive case for direct democracy.

IACC’s unelected leader and unelected government officials have repeatedly acted only in their own self interest rather than in the public’s. Interesting, because that is why we have the autism epidemic in the first place.

Tom Insel is a man clearly trying to run out the clock. His boss, Mike Leavitt is gone and Insel is taking full advantage of his power in pursuit of his own agenda- stopping vaccine research. The committee voted to spend a miniscule  2% of the CAA budget for independent vaccine research. Insel, apparently panicked at that prospect, held a surprise “re-vote” at the next meeting. Anti- vaccine research committee members were told about the re-vote in advance but members who stand for honesty, transparency and the public interest were not.

There was a huge public outcry over Insel’s deceptive actions and a near universal call for re-instatement of the vaccine research. But rather than listening to appeals for common decency,  reason, Senators, Congressmen, Moms, Dads, Autism Speaks, ASA, the National Autism Association, SafeMinds, Generation Rescue, TACA, Tom goes it alone- yet again. This self-professed non expert in autism, non expert in vaccines, unelected bureaucrat believes he knows better than everyone. Rather than respecting the public’s wishes and the public interest, Insel hands the CDC and other govt agencies even more money to continue investigating and exonerating themselves. Why not just burn the money now? Let’s just end any pretense that these projects will amount to anything.

IACC: Ethical Disaster Zone
March 20, 2009
By Katie Wright

My phone would not stop ringing today. Parents everywhere were appalled by the behavior and actions of the IACC. And that is just the parents listening to the committee via phone lines. What people who attended IACC in person told me they observed shocked me.
 
Many of the committee members are directors of government institutes which conduct autism research. However, some of these directors are sorely lacking basic knowledge about autism. Dr. Story Landis actually asked what IMFAR was! Seriously she did. It was only downhill from there.

Autism Families Shut Out at IACC
July 22 2009
By Katie Wright

Alex wanted to wear a tie for the first time in his life. He was also wearing special new slacks and a blazer. Alex is a handsome young man severely affected by autism. He and his mother Elizabeth, traveled all the way from CALIFORNIA to make their pre-approved comments at the public session of IACC.

Elizabeth and other Moms in attendance had to submit pre-approved questions to IACC in order to be allowed to make comments. OK, why the need to “pre-approve” comments? Are IACC meetings in danger of being crashed by strangers? Is this really such a hot ticket? Why can’t parents just sign up and be told what time to be there? Why is IACC censoring public comment? Who is IACC charged with serving? Uninformed bureaucrats who do not really care about our kids or is IACC there is serve the autism community?

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