NIMH Flip-Flops on Pivotal IACC Workgroup Meeting
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.)
In response to the closed door notice, Jim Moody wrote a piece entitled “What’s so Secret About Autism Science” (HERE) in an attempt to pressure officials to open the meeting while raising important process and transparency questions surrounding the development of the SP. [Please read this article before proceeding and pay particular attention to his comments regarding the Federal Advisory Committee Act (FACA)]. Unfortunately, Jim’s pleas were ignored and the workshops conducted their deliberations behind closed doors as planned.
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)]
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.
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)]
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.
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.
hey, where has kelli ann been anyway? it's like she won the t-shirt contest, took her booty and retired! ;)
Posted by: kim | July 29, 2009 at 07:23 AM
I'm just intrigued that they let in Autism Research Institute! Wow. Despite all the negative aspects of what has gone on here, let's celebrate that. Usually ARI is on the outside looking in, like the rest of us. A step in the right direction.
Posted by: SMD | April 10, 2009 at 10:00 AM
Dear Kelli Ann -
I'm posting here since I know you'll see this. I've come across your name and posts/articles and I'm very pleased. Thanks for all the obviously hard work.
I'm a former Gov't relations person who used to fight for the corporate side of health care issues. Now I have a 5 yr old w/ PDD-NOS. Ironic, isn't it. Now I advocate to help the ASD community.
I've been working closely w/ my Congressman's office (Jim Moran - VA 8th) and we've made good progress in terms of getting the LA on board.
I'm going to give a public comment at the IACC meeting, and try to stay involved as much as possible.
I'm interested in joining your efforts here in DC. Do you need and/or want another pair of hands? I'm eager to do what I can to push the biomed and vaccine issue. My son Adam is a regression kid. I have a case in the federal vaccine court. I am doing DAN and we've seen good progress.
At the least, I'd appreciate some of your time getting some of the political history down. And maybe offer an avenue for a message at the IACC given by a member of the public. I want to express my personal views at the IACC, but I also want to get the biggest bang for the buck. I'm not associated with any organization, so perhaps I can speak a little more freely.
Posted by: Katherine Walker | November 14, 2008 at 09:09 PM
I listened to the meeting via telecast. Basically, all that was said was, "Do you think such and such money will be enough to do studies on autism?" The members from the CDC were quite verbal in stating that they think they need much more money than what was forecasted. Many others stated they need more money as well. There was the usual genetic advocates. There was some mentioning of the need to do other research into possible causes. I think only the Autism Research Institute had something new to say, in the area of white blood cells. Now that was hopeful. Basically what I got out of listening to that webcast was that we need more people stepping up to get this money. If only a few of the same organizations keep doing the same things, then we will keep having the same results. I actually felt from what was said that if an organization with a good research plan came out of nowhere, they just might get some of that money. Thus, know that the problem with our research maybe we don't have more organizations requesting the funds.
Posted by: Heidi N | August 26, 2008 at 09:35 AM
I haven't read the all the comments, but if I recall correctly, the two names that have come up so far, Insel and Hollander - are both connected with studies of oxytocin in ASD treatment. Certainly, if OT treatment pans out, being a natural neuropeptide (mentioned in Jepson's CTC as being low in ASD kids, as well as not increasing during puberty as normally happens in NT development), is preferably to synthetic, never-seen-by-mother-nature-before anti-psychotics (especially considering anti-psychotics are particularly good at playing BAD bingo with the dopamine system).. Is this is coincidence?
Disclaimer: I take oxytocin myself, and it has allowed me to completely eliminate the need for an antidepressant (bupropion, previously at 75 mg TID).
Posted by: Jim Witte | August 26, 2008 at 01:01 AM
"I would like to see more written about it on this forum and would love to see detailed disclosures of the conflicts of interest of every member of IACC and related proceedings (some will have none and others a great many)."
Click your heels three times. It may happen sooner than you think :-)
Posted by: Kelli Ann Davis | August 25, 2008 at 08:13 PM
An Investigation and Oversight Committee can access the documents without going through FOIA.
Ain't that grand?? And they get EVERYTHING.
Posted by: Kelli Ann Davis | August 25, 2008 at 08:08 PM
Thanks so much for working so hard on this! If there's anything we can do to help you or the committee, just say so!
On an unrelated note, has anyone had any experience or success with trying to FOIA documents from HHS?
Posted by: Garbo | August 25, 2008 at 03:08 PM
Maybe it's all clear as a **Bell**.
My guess-- which should surprise no one who reads my posts (all three of you)-- is that some members of IACC are forming a medication algorithm program and embedding brand-name, expensive, on-patent neuroleptics and other psychiatric drugs to the budget. The rest, those people who more represent the environmental-injury realm, seem to remain quiet about it in public. I wonder if "our side" feels our environmental cause position is so tenuous within these proceedings that pushing the envelope too far could jeopardize their inclusion in the future.
The drug embedding process seems similar to the "MAP" programs (TMAP, CMAP, PENMAP) which are now the subject of Congressional investigation and suits against drug companies by the attorneys general of multiple states for compensation due to financial and marketing fraud and deaths and injuries to countless Medicaid recipients from the "algorithm" drugs.
Peter Bell of Autism Speaks was formerly the worldwide marketing director for Janssen and wherever he's active, even long after leaving his position with the drug company, Janssen's Risperdal mysteriously becomes embedded into budgets, becomes the subject of recommendations by name, the focus of stealth marketing posing as research which is "benevolently" funded by AS and others, etc. You could track Bell by the Risperdal promotion he leaves in his wake. He doesn't seem terribly unfriendly to drugs from other companies either (Hollander's orphan-patent Prozac campaign).
I fear that the movement, while performing "chemotherapy" on the scientific fraud of the vaccine industry, may leave in place the "tumor" of the psychopharmaceutical agenda. And haven't they done enough to our kids as it is? I would like to see more written about it on this forum and would love to see detailed disclosures of the conflicts of interest of every member of IACC and related proceedings (some will have none and others a great many).
Posted by: Gatogorra | August 25, 2008 at 12:48 PM
The letter from subcommittee chairman Brad Miller to Sec. Leavitt mentioned the distrust Americans have for HHS when it comes to ASD.
Miller wrote. "Given the fact that the Department has lost much of the public's trust, it would be to your agency's advantge to involve as many people from the activist community as possible in any decision-making." Leavitt was told to "build new relationship and repair old ones."
Miller also named SafeMinds and Generation Rescue as being currently involved in autism research, but I don't see their names on the list.
Closed door meetings and selective membership indicates that real purpose isn't to honestly address autism. In fact, there's no indication whatsoever that autism is even a health crisis. This will again prove worthless in doing anything to stop this disaster and recover our kids.
Posted by: Anne Dachel | August 25, 2008 at 11:00 AM
NIMH doesn't bother informing the public that one kind of prevalent non-familial autism and schizophrenia are caused by older paternal age. They sit on this information and create research grants that enrich the researchers and companies. http://www.schizophreniaforum.org/for/curr/Malaspina/default.asp
Posted by: Leslie | August 25, 2008 at 10:27 AM
Thanks Maggie and Katie.
Katie -- you're right. Lyn is *our* voice on the Committee and she's been trying to fight these issues in an effort to make the process transparent and fair.
Unfortunately, she's been facing an *up hill* battle and that's why it's so vitally important that the Subcommittee is willing to *step up to the plate* and help in opening up this whole process in an attempt to make sure it's done in accordance with the law.
Stay tuned to Age of Autism for further updates as this important process moves forward.
Posted by: Kelli Ann Davis | August 25, 2008 at 10:07 AM
Thank you so much Kelli Ann for all your hard work in making this process more transparent for the families with ASD kids the IACC was designed to represent. This secrecy is shameful and a betrayal of our children whose suffering contunes unabated while the IACC slams the door on their families. I know Lyn Redwood is fighting so hard for openness and a sense of urgency within the IACC.
What is the AS representative doing?????Weren't promises that this would be an open and inclusive process when AS was asking for the community's support of the CAA?
Posted by: Katie Wright | August 25, 2008 at 08:23 AM
Thanks Kelli Ann. Keep up the good work!!
Posted by: Maggie | August 25, 2008 at 06:33 AM