Generation Rescue Seeks Legal Advice on IACC Violations
Managing Editor's Note: The following is a response to the IACC meeting from our sponsor Generation Rescue.
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).
On Tuesday, the day before the fateful IACC meeting leading to Alison Singer’s vote and resignation (HERE), the non-profit Public Citizen Litigation Group put us in touch with the DC firm and the following information was sent to a senior partner after our phone call. (Side note: The latest information regarding the “revote” shenanigans was sent as follow up on Friday):
A Brief Description of FACA Violations:
"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.
"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)
"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.
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
Hardly a waste of resources to get to the bottom of what's causing autism in the first place. It's actually the absolute best use of resources, to break down the dam that's been erected by PHarma and a recalcitrant, guilty government, so that the resarch dollars can flow to find the obvious cause of the epidemic. So that the children who have autism can be recovered to the fullest extent possible and future children might be prevented from getting it in the first place. The surest way to reduce maltreatment of autistic children everywhere is to reduce the numbers of autistic children in the first place. Suing school districts won't help.
Posted by: Garbo | January 21, 2009 at 08:40 PM
GR is suing the NIH? Why not sue the countless school districts abusing autistic children? Seems like a terrible waste of resources.
Posted by: K | January 20, 2009 at 03:58 PM
THANK YOU!!!! We will be sending good energies for ALL of your efforts on behalf of our children.
MD Coalition for Vaccine Choice
Posted by: Cassandra | January 20, 2009 at 07:56 AM
Kelly - I would like to forward this piece to my boss who is an attorney right outside of Washington - is that okay with you?
Posted by: Amy | January 20, 2009 at 06:48 AM
Thank you Kelli Ann and Generation Rescue for taking on the government and industry giants who have hidden agendas and have turned away from our pleas to recognize and get answers on the autism epidemic.
It is beyond time that the autism community unite and every autism organization in the U.S. mobilize their members and stand behind you. (That would be a feat in itself if we could repair the divisiveness in our very own community) We have so much to lose, and the thought of fighting this battle for another decade is deflating. We need answers, and we need them now. We need to get our kids recovered, and for AMA, AAP, CDC and NIH to immediately respond to this national epidemic. We are a powerful and exponentially expanding voice and we are not going away. If nothing else, they should be concerned about the staggering healthcare costs for treating a nation of autistic children over their lifetime. I heard dates thrown out at the IACC meeting of "starting in 2012, 2015, etc.." Where's the sense of urgency?
Posted by: Lisa Hunter Ryden | January 20, 2009 at 06:31 AM
I wish Generation Rescue the best with their lawyers on the IACC violations. These lawyers will have their work cut out for them. The Dept. of HHS (CDC/NIH/FDA)was created by our representatives in Washington, DC but yet the pharmaceutical industry trumps the public (who by the way pays for their budget with tax money) when it comes to who has a voice. So too with the IACC, the pharmaceutical industry calls the shots, not the public!!!
Why is that?
The following on Autism Speaks and Alison Singer:
By Shaun Heasley
January 19, 2009
A top executive at Autism Speaks resigned last week, the result of a disagreement with the organization about the issue of vaccines and autism.
Alison Singer, the executive vice president of communications and awareness for the organization, stepped down ahead of a meeting of the Interagency Autism Coordinating Committee, part of the U.S. Department of Health and Human Services. At the meeting, Singer voted against funding research of the link between autism and vaccines, a position in contrast with that of Autism Speaks.
“For some time I have had concerns about Autism Speaks’ policy on vaccine research,” Singer says. “Dozens of credible scientific studies have exonerated vaccines as a cause of autism. I believe we must devote limited funding to more promising areas of autism research.”
Now, Singer is publicly speaking out about the vaccine issue. In an interview with Newsweek, she says the issue of vaccines should be put to rest since research funding is limited and the existing scientific research shows no link. “This question has been asked and answered and it’s time to move on,” Singer tells Newsweek. To read more click here........
If the lawyers can not stop the IACC violations, I would suggest a public push to get rid of the Dept. of HHS and if that isn't a possibility, then to reduce and cut their budgets substantially. The public can do this since we pay taxes for the Dept. of HHS and we have a right to tell our representatives how we want our money to be spent. With Autism Speaks, it they don't want to fund what we want (per vaccine/autism studies) then we don't donate (which I personally have never donated to them because they never funded these kinds of studies).
Posted by: Raymond Gallup | January 19, 2009 at 09:49 PM
What is the name of your law firm?
Posted by: Wonderin' | January 19, 2009 at 07:58 PM
Thank you Kelli Ann for shining a strong light in the crevasses where the inequities are being hidden and bringing clarity to a process that has been intentionally kept opaque in an attempt to keep us from understanding the many ways in which a few powerful players can control the field.
Thanks to Generation Rescue!
Posted by: cherri | January 19, 2009 at 02:09 PM
Thank you for empowering me with the details. Yesterday, I emailed all relevant AOA articles to my Congressman and his health staffer. This will be emailed today! I will hound their ass, most likely for the rest of my life, or until this national tragedy reaches its' inevitable conclusion.
Posted by: Bruce Vanicek, Middletown, RI | January 19, 2009 at 01:40 PM
Some people think that we parents should not be participating in government committees. But if we didn't, who would be there to document the bureaucratic misdeeds? Especially in such fine detail, as the GR team has done here.
Thank you, Kelli, for all your time spent and hard work. (And doubtless some gnashing of teeth.)
Posted by: nhokkanen | January 19, 2009 at 01:02 PM
Thank you so much, Kelli Ann & GR, for continuing this fight on behalf of people with autism.
Posted by: Twyla | January 19, 2009 at 12:25 PM
You guys go for it! We are all with you. If I ever meet you in person, you know that there will be at least 1 man who will be proud to hold your purse for you!
Posted by: Craig Willoughby | January 19, 2009 at 12:24 PM
Thank you for taking action! We will never go away until we get answers.
Posted by: Kristen | January 19, 2009 at 11:34 AM
didn't think GR would take this lying down but WOW, what a great response. As one reader said, maybe this admission of theirs as to conflict of interest will turn to an advantage. Best of luck with this.
Posted by: jen | January 19, 2009 at 10:38 AM
Generation Rescue and Kelli Ann,
There are so many of us out here ready and willing to provide any help and support that you need. Just say the word AND WE'LL BRING OUT OUR FORCES. Meanwhile, we are watching and waiting.....thanks.
Posted by: Maurine Meleck | January 19, 2009 at 10:37 AM
In March, 2006, Dr Peter Fletcher, former Chief Scientific Officer at the Department of Health in the UK, was quoted in the Daily Mail saying,
'There are very powerful people in positions of great authority in Britain and elsewhere who have staked their reputations and careers on the safety of MMR and they are willing to do almost anything to protect themselves.'
The same is true in the U.S. When we read about the web of conflicts involving IACC members, it should raise serious concerns.
When govt. officials won't even admit that there has been a real increase in autism, why would anyone imagine that they'd ever seriously investigate a link to the vaccine program?
Posted by: Anne Dachel | January 19, 2009 at 09:12 AM
Great work Kelli Ann and Generation Rescue! This is a very well laid out case and exceptionally well written.
We'll all look forward to hearing the law firms response.
Posted by: Pamela | January 19, 2009 at 08:21 AM
Good luck! The last few days have been quite depressing and the future for the vaccine research dollars looks lost. I pray for a path to honesty and transparency.
GR, thank you.
Posted by: kathleen | January 19, 2009 at 08:20 AM
The corrupt and the greedy have been playing their dirty games with indemnity for far too long.
Posted by: Enough is enough | January 19, 2009 at 06:25 AM