E-Newsletter January 2009 #2

Here is your update on TACA (Talk About Curing Autism). If you are new to our site... WELCOME! This newsletter is produced two to four times each month.

We are an autism education and support group. We want to make this e-newsletter informative for you. As always, contact us your thoughts and/or questions so we can improve it.

We focus on parent information and support, parent mentoring, dietary intervention, the latest in medical research, special education law, reviews of the latest treatments, and many other topics relating to autism. Our main goal is to build our community so we can connect, share and support each other.

Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s.

In this edition:

TACA News

1. Find a TACA Meeting

2. Real Help Now Live Chat

General News

3. The Inter-Agency Autism Coordinating Committee Meeting Rescinds Vaccine Research Initiatives from the Strategic Plan of Combating Autism Act

4. Autism Speaks Withdraws Support for Strategic Plan for Autism Research, Decries Unexpected Change in Final Approval Process

5. Executive Vice President of Autism Speaks Resigns Over Vaccine Research Disagreement

6. Federal Members Of Advisory Committee Block Vaccine-Autism Research, Defy Wishes Of Its Own Scientists, Autism Community, and Congress

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1 Find a TACA Meeting
Come to a TACA Meeting!

TACA holds monthly meetings in many locations throughout the United States that feature educational speakers on important topics and allow family members to connect with one another and stay on top of the latest information in the autism world. Each TACA group maintains a resource library of the latest autism books and tapes that can be checked out by members at no charge.

Check out our group listings: each contains information on TACA meetings and special events as well as a contact form.

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2 Real Help Now Live Chat

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And don't forget to join us online at TACA-USA Yahoo! group and Facebook!
 
3 The Inter-Agency Autism Coordinating Committee Meeting Rescinds Vaccine Research Initiatives from the Strategic Plan of Combating Autism Act

Statement prepared by TACA – Rebecca Estepp

January 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. 

Who is IACC and what do they do?

IACC is made up of 18 seats. Twelve members are government representatives and six members are from the general public. IACC is responsible for developing and updating the Strategic Plan for Autism Research under the mandate of the Combating Autism Act. They decide which studies get funding from the $940 million that was allocated to autism research under the Act. The two vaccine research studies in question totaled $16 million, less than two percent of the available funds.

What is the reason for the re-vote?

Ed Trevathan from the Centers of Disease Control (the government agency who promote the vaccine program) brought up the idea of removing the vaccine studies from the Strategic Plan. Dr. Insel agreed under the auspices of conflicts of interest since the Department of Health and Human Services is the defendant in Vaccine Court. Dr. Insel also felt that the National Institute of Health was poorly equipped to do vaccine research.

How did the vote go?

It was decided to reject the previously approved vaccine research studies by a vote of 11 to seven. Five out of six public committee members voted against rejecting the approved studies. The one lone public voice that voted with most of the government representatives was Alison Singer, former Executive Vice President of Autism Speaks. 

What has been the fall out?

There has been plenty of fall out and this situation is only hours old. Autism Speaks has withdrawn its support of the Strategic Plan. They have issued a very good press release detailing the events of the meeting. See press release below.

Alison Singer no longer works for Autism Speaks. It gets even more interesting. The Autism Speaks’ Press Release was issued early in the afternoon on January 15th. A few hours later a new press release came out by Every Child by Two about Alison Singer’s departure from Autism Speaks. Read press release below.

Does this mean that Alison Singer will be working at Every Child by Two? That is not clear.

The Strategic Plan has lost support from SafeMinds (Sensible Action For Ending Mercury-Induced Neurological Disorders). SafeMinds is also asking incoming Health and Human Services Secretary Daschle to remove the National Institute of Mental Health as the lead agency for autism research. They have another request to Congress to get the repealed studies reinstated.

TACA supports both SafeMinds and Autism Speaks press release and response to the recent IACC actions. In light of the recent Mind Institute Study ("UC Davis M.I.N.D. Institute Study Shows California's Autism Increase Not Due to Better Counting, Diagnosis") environmental research including vaccines must be completed as part of the Combating Autism Act funding.

Silver Lining?

There may be a silver lining to these actions. Dr. Insel brought up a good point, although, it may not have been his intent. Our country does need truly independent vaccine research. The department of Health and Human Services is the defendant of Autism Omnibus Cases; it is a conflict of interest in having them research vaccine safety.   Independent studies are something the autism community must demand.

Alison Singer left her position at Autism Speaks. Alison was not friendly to the bio-medical and environmental research community. With her departure, there could be an easing of the relationships between Autism Speaks and the bio-medical/environmental research community.

There is also a feeling that the repeal of this IACC vote is tantamount to the 2002 Homeland Security Rider which briefly gave exoneration (it was later repealed) to the drug companies for injuries that occur because of vaccination. That rider was so egregious that it got the attention of a journalist named David Kirby. Look how that turned out. Hopefully we have the same situation here.

What to do?

The response plan is still being hammered out by many of the Autism Organizations. In the next weeks, we may have call to actions for parents, friends and family to take part in as this situation evolves.

 
4 Autism Speaks Withdraws Support for Strategic Plan for Autism Research, Decries Unexpected Change in Final Approval Process

Calls for New Administration to Restore the Intent of Combating Autism Act to Respect and Value Community Input

NEW YORK, NY (January 15, 2009) – Autism Speaks today decried a vote by the Interagency Autism Coordinating Committee (IACC) to reverse a previously voted-on decision to approve objectives relating to vaccine safety research as part of its deliberations for the Strategic Plan for Autism Research. The decision to debate removing these objectives was not posted on the meeting's agenda, nor were the public members given any forewarning that this section of the plan – which was resolved at the previous IACC meeting in December -- would be revisited. As a result, Autism Speaks is withdrawing its support for the Strategic Plan.

IACC met yesterday at the NIMH in Bethesda, MD, to finalize the Strategic Plan. As mandated by the Combating Autism Act of 2006, IACC must develop and annually update a strategic plan for the conduct of, and support for, autism spectrum disorder (ASD) research, including proposed budgetary requirements.

“We are angered and disappointed by this last-minute deviation in the painstaking process of approving the Strategic Plan. Members of the autism community have worked tirelessly during the last two years to develop a plan that would set the stage for significant progress and discoveries for autism research over the next five years,” said Bob Wright, co-founder of Autism Speaks. “In a matter of minutes, the Federal Members of the IACC destroyed much of the good will that had been established during the course of this process. Because of this surprise tactic, we now have a plan that is tainted and cannot be supported by the autism community.”

Five of the six public members voted against this revision. Autism Speaks Executive Vice President Alison Tepper Singer was the sole public member to cast a vote in support. The evening prior to the vote, Singer submitted her resignation to Autism Speaks – which was accepted – based on her intention to vote on certain Strategic Plan vaccine safety matters in a way that diverged from Autism Speaks' position on this issue. Thus, in casting votes on January 14, she was acting as an individual public member of IACC and no longer as a representative of Autism Speaks.

“We are hopeful that the new administration will fulfill the intent of the Combating Autism Act and truly value and respect the input of the autism community,” added Wright. “It is imperative that we move forward and ensure that there is a Strategic Plan that meets the needs of the autism community. Autism Speaks is committed to being part of that process.”

About Autism
Autism is a complex brain disorder that inhibits a person's ability to communicate and develop social relationships, and is often accompanied by behavioral challenges. Autism spectrum disorders are diagnosed in one in 150 children in the United States, affecting four times as many boys as girls. The prevalence of autism has increased tenfold in the last decade. The Centers for Disease Control and Prevention have called autism a national public health crisis whose cause and cure remain unknown.

About Autism Speaks
Autism Speaks is dedicated to increasing awareness of autism spectrum disorders, to funding research into the causes, prevention and treatments for autism, and to advocating for the needs of individuals with autism and their families. It was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Bob Wright is Senior Advisor at Lee Equity Partners and served as vice chairman, General Electric, and chief executive officer of NBC and NBC Universal for more than twenty years. Autism Speaks merged with both the National Alliance for Autism Research (NAAR) and Cure Autism Now (CAN), bringing together the nation's three leading autism advocacy organizations. To learn more about Autism Speaks, please visit www.autismspeaks.org.
 
5 Executive Vice President of Autism Speaks Resigns Over Vaccine Research Disagreement
NEW YORK, NY (January 15, 20091- Alison Tepper Singer, executive vice president of communications and awareness for Autism Speaks, today announced that she has resigned from her position with the advocacy organization, effective next month.

"It has been an honor and a pleasure to help to build this organization into the preeminent autism advocacy group -- the group that has, in fact, elevated the word "autism" to the global vocabulary," said Singer. "I am grateful to Autism Speaks founders Bob and Suzanne Wright for their readership, insight, commitment and for the tremendous support and love they have shown to my family and me."

"However, for some time I have had concems about Autism Speaks' policy on vaccine research. 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."

Singer resigned prior to the January 14th Interagency Autism Coordinating Committee (IACC) meeting, at which the discussion of vaccine research was to be continued from the December meeting, at the request of one of the public members. Knowing she might cast a vote with which Autism Speaks might disagree, she resigned from Autism Speaks prior to the meeting. Singer serves as a public member of the IACC and will continue to serve until 2011. She was appointed to the IACC by outgoing HHS Secretary Michael Leavitt in 2007.

The IACC, created via the Combating Autism Ad of 2006, is responsible for coordinating all efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder. including drafting a Strategic Plan for autism research with budgetary requirements. At the January meeting, the IACC voted to seek input on two proposed studies of vaccines and autism from the National Vaccine Advisory Committee Safety Working Group (NVAC), an HHS group specifically charged with undertaking and coordinating scientific review of the federal vaccine safety system, prior to induding the proposals as specific objectives in the strategic plan. Singer voted in favor of this motion.

Singer was the first professional hired by Autism Speaks when it launched in 2005. She served as interim CEO for three months, then as senior vice president and later as executive vice president. She also served as a staff member of the board of directors until her resignation. Singer has been responsible for directing the organization's award-winning awareness and strategic communications programs, including its work with the Ad Council which was awarded a prestigious "Effie" award in 2008 in recognition of the 43 percent increase in overall autism awareness directly attributable to the campaign. She also serves on the Executive Committee of the Yale Child Study Center and on the board of direc tors of Autism Spectrum News, as well as on numerous state and local autism advocacy committees. She has appeared on Oprah, The Apprentice, NBC Nightly News, Good Morning America, CBS Early Show and numerous other news programs discussing autism issues. "My work with Autism Speaks and within the advocacy community has been exceptionally rewarding, and I will continue to advocate on behalf of my daughter, my brother and the millions of others affected by autism spectrum disorder," said Singer.
 
 
6 Federal Members Of Advisory Committee Block Vaccine-Autism Research, Defy Wishes Of Its Own Scientists, Autism Community, and Congress
SafeMinds Withdraws Support for Autism Research Strategic Plan, Asks Daschle to Investigate.

JANUARY 16, 2009 – In a highly unusual departure from procedure, government representatives to the Federal Interagency Autism Advisory Committee (IACC) voted this week against conducting studies on vaccine-autism research despite approval of the same studies at their prior meeting. The research was supported by numerous autism organizations and requested by IACC’s scientific work groups and Congress.  The maneuver to re-vote on the vaccine-autism studies was initiated by the IACC’s representative from the CDC and pushed through by the IACC Chair, Dr. Tom Insel, Director of the National Institute of Mental Health of NIH.

Unlike most Federal advisory committees, the IACC is dominated by government representatives occupying 12 of the 18 seats. Of the 6 public members, 5 voted to retain the vaccine research at the meeting. The lone dissenting public member resigned from her organization, Autism Speaks, the night before the meeting.  Autism Speaks has issued a statement condemning her vote. 

The CDC, part of HHS along with NIH, has been criticized by parents citing failure to uphold vaccine safety. In a surprising moment of candor, Dr. Insel cited HHS conflicts of interests on vaccine-autism research due to the over 5,000 autism lawsuits pending against HHS. His comment supports the autism community’s contention that those in charge of promoting vaccine use while assuring safety are fundamentally conflicted and should not investigate themselves.

IACC Member and SafeMinds Vice-President Lyn Redwood stated, “Revisiting objectives already approved did not appear on the meeting’s agenda.” She added, “Advocacy groups and legislators have been marginalized in this process.”  She added,

Senators Enzi, Dodd, Kennedy and Santorum, as well as Representatives Barton and Smith made statements which are part of the Combating Autism Act of 2006 legislative history that research on vaccines and their components and autism should be implemented by the IACC. 

Due to the IACC’s actions, SafeMinds has withdrawn its support of the IACC Strategic Plan for Autism Research and requests that incoming HHS Secretary Daschle investigate the IACC’s action and reconstitute the committee, including removal of NIMH as its lead agency. 

SafeMinds is a private nonprofit organization that investigates and raises awareness of the risks to children of exposure to mercury from the environment and medical products, including thimerosal in vaccines.
 
 
Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s. TACA does not engage in lobbying or other political activities.

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