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The federal panel charged with allocating funds for autism research has squandered hundreds of millions in taxpayer money on ideological, nonscientific priorities. Its decisions have been financially irresponsible and practically ineffective. Its chairman should be fired and many board members replaced.
So says the Brooklyn-based Elizabeth Birt Center for Autism Law and Advocacy (EBCALA) in a stinging critique of autism policy under the Bush and Obama administrations titled “A Critical Review of the Performance of the Interagency Autism Coordinating Committee” (IACC).
“From the controversial appointment or retention of committee representatives, to the troublesome history of committee members themselves, to the lack of accountability for the few advances made in autism research, to the questionable direction of the Strategic Plan, it is fair to state that the IACC is not living up to Congress’ and the public’s expectations,” the July 10, 2012, report says.
Formed in late 2008, the Birt center educates lawyers, advocates and parents about the legal challenges of autism. “EBCALA provides training, resources and a forum within which to advance legal and advocacy strategies to improve the lives of those with autism,” its website says. It is named after Elizabeth “Liz” Birt, an attorney, a co-founder of the nonprofit advocacy group SafeMinds and a founding member of the National Autism Association. She was a principal author of a 2003 Mercury in Medicine report by the House Government Reform Committee that found mercury in vaccines was toxic.
Autism is a neurodevelopmental disorder that impairs children’s communication, behavioral and cognitive development. With rare exceptions, it is a lifelong condition that comprises a complex range of symptoms known as autism spectrum disorder (ASD).
The IACC was mandated in the Combating Autism Act of 2006, passed by Congress in response to the autism epidemic sweeping the nation and the world. A 2001 study published in the Journal of the American Medical Association found that between 1980 and 1994, the incidence of California children with autism jumped from 1 in every 2,272 live births to 1 in 480. When the IACC formed 13 years later, the widely accepted rate nationwide was 1 in every 166 children.
A 29-member panel composed of representatives from federal agencies and the public, the IACC is overseen by the Department of Health and Human Services (HHS). Its list of objectives and activities includes developing and annually updating a strategic plan “for the conduct of, and support for, autism research, including proposed budgetary requirements.”
Dr. Thomas Insel, head of the National Institute of Health, was appointed the IACC’s first director in 2007 and remains in the post to this day. Over the past six years, he and the committee have exercised authority over hundreds of millions of dollars in federal money allocated for autism research, the Birt report says.
Noting that the accepted rate of autism incidence today is 1 in 88, the report says Insel’s leadership has failed, and he is unfit to head the committee.
“The autism rate has doubled on Dr. Insel’s watch,” it says. “None of the research that IACC has funded under his direction has led to significant advances in understanding autism causation.”
Neither has any IACC funding led to significant improvement in the lives of those with autism, the report continues. And as hundreds of thousands of children with autism reach adulthood in the coming years, IACC has done virtually nothing to prepare the country for that reality.
“The most promising area of research, environmental causation, has been studiously avoided and is likely to be avoided going forward under his stewardship,” the report says. “This failure of leadership, together with conflicts of interest, procedural lapses, and the decision to appoint an unrepresentative body of new committee members, speak to Dr. Insel’s unfitness to continue as chair. IACC needs new leadership and new members if it is to succeed in its mission.”
At the heart of the Birt critique is the IACC’s history of emphasizing research into the role genetics play in autism and downplaying environmental factors – especially the neurotoxin mercury in childhood vaccines.
“Environmental research has been grossly underfunded,” the report says, calling on the General Accounting Office (GAO) to study past IACC funding “to see why almost all money went to genetic research, which we now know, based on peer-reviewed science, is not the predominant factor in autism.”
The committee’s anti-environmental stance has long kindled concern about conflicts of interests and the panel’s independence, which have been raised historically and gone unaddressed.
“For example, it is no secret that among parents vaccines are widely considered to play a significant role in the development of autism,” the report says. “Although controversial and widely dismissed by sophisticated public relations campaigns, far more science supports vaccines as a causal factor in autism than mainstream press coverage suggests.”
In fact, a Pace Environmental Law Review article published in 2011 showed that the federal government “has been quietly rewarding compensation for autism in association with vaccine injury for decades, lending support to the association that parents have recognized for years,” the Birt report says.
Led by NYU School of Law professor Mary Holland, the Pace article’s authors said, “This preliminary study suggests that the VICP (Victim Injury Compensation Program) has been compensating cases of vaccine-induced encephalopathy and residual seizure disorder associated with autism since the inception of the program.”
The article not only links autism with “vaccine-induced brain damage,” it “suggests the possibility that other contemporary childhood neurological disorders, including attention deficit disorder and learning disabilities, might be less severe after-effects, on the same spectrum of vaccine-induced brain injury.”
Yet Insel’s brother “became wealthy as the developer of a mercury-containing vaccine,” the Birt report says. And the IACC head suggested at a National Autism Association conference in 2007 that there was hope for a vaccine that would prevent autism.
The 11 new public members Insel appointed to the IACC panel that convened July 10, 2012, are a far cry from the balance the committee is supposed to represent. Only one, registered nurse and activist Lyn Redwood, represents parents who believe autism is a medical condition that can and should be prevented and treated, the report says. The rest are “ideologically biased” in favor of the pharmaceutical industry’s interests.
“There is widespread speculation within the autism community that they were selected for their hostility to investigation of environmental causes of autism, including vaccines,” the Birt report says, listing six that are publicly funded or aligned with the vaccine-industrial complex.
Matt Carey, the father of an affected child, writes about autism under a pseudonym on a UK blog. “He represents no national organization and actively opposes all vaccine safety research, while he attacks parents who advocate for it,” the report says. “Under his pseudonym, Carey is best known as an ardent defender of Dr. Paul Offit, the wealthy developer of Merck’s rotavirus vaccine.”
Dr. Jose Cordero has served at the CDC for 27 years and is on record for pressuring the journal Pediatrics to publish a deeply flawed vaccine safety study in Denmark, the report says. “Worse, he allocated millions of taxpayer dollars to Danish researcher Dr. Poul Thorsen, who was indicted by Department of Justice for 13 counts of wire fraud and nine counts of money laundering of CDC money allocated to autism research.”
Dennis Choi is a former employee of Merck, one of the world’s top-three vaccine manufacturers, and is now on staff at the Simons Foundation, a research organization committed solely to a genetic causation model of autism, Birt says.
Alison Singer, the mother of an affected child, serves as president of the Autism Science Foundation, an organization she started that is funded at least in part by vaccine makers.
Dr. Anshu Batra, the mother of two boys on the autism spectrum, is a public advocate for the American Academy of Pediatrics and its fight against vaccine safety research. “Dr. Batra represents no national autism organization,” the report says. “She has written no books, conducted no research on autism, and it is unclear whether her medical practice specializes in any kind of autism treatment.”
Dr. David Mandell is a psychiatrist and researcher who also represents the Autism Science Foundation. “His apparent goal is to develop new interventions for autism treatment, primarily using pharmaceuticals,” the report says.
“Astonishingly, even though significant evidence exists to show autism is an environmentally caused disease, no environmental scientist has been appointed,” the Birt report says. “This seems not only illogical, but also highly irresponsible.”
It is hard to interpret the new IACC as anything other than “a stinging rebuke to those who believe autism is a treatable, medical condition with underlying environmental causes,” it continues. “… It is even harder to believe any real progress will be made under the direction of the new committee members on the environmental triggers of autism.”
The Birt report analyzed results from 20 IACC-funded studies in 2011 and found none did anything to advance the quality of life for those affected by autism and their families.
The studies addressed seven questions:
- When should I be concerned? (2 studies)
- How can I understand what’s happening? (4 studies)
- What caused it? Can it be prevented? (5 studies)
- Which treatments will help? (3 studies)
- Where can I go for services for adults? (1 study)
- What does the future hold for adults? (3 studies)
- What other infrastructure and surveillance needs must be met? (2 studies)
The study results, the Birt report charged, were laughable. “In spite of spending millions of dollars just in 2011, we learn that autism is genetic, environmental, a combination thereof, and that really, they still aren’t sure.”
The studies also found: most medications don’t work; therapy only works if the teacher is good; social goals should be set for affected children; there are no services for adults; there is an increase in ASD, but there’s not an increase in ASD; and pediatricians should be on the lookout for autism by one year of age.
“The monumental waste of time, money, resources, and effort that went into confirming, or confusing, that which could have been identified through common sense and daily life is stunning,” the report says.
In addition to demanding that Insel be fired and the GAO study why so much funding went to genetic research, the Birt report issued four other demands.
First, HHS Secretary Kathleen Sebelius declare autism a national health emergency. “The human and financial toll of autism is catastrophic. The problem cannot be solved unless it is first acknowledged.”
Second, Sebelius meet with a group of representatives from FOCUS Autism, a coalition of organizations that represents more than 100,000 people, to discuss the autism health emergency. “We do not sense that she understands the urgency of this situation.”
Third, the Centers for Disease Control and Prevention rescind its recommendation for day of birth vaccination against hepatitis B. “There is no medical reason for this intervention at such an early and fragile point in infant development. … Peer-reviewed science has shown an association between day of birth hepatitis B vaccination and autism.”
Fourth, the House Government Reform and Oversight Committee hold hearings on the role of federal authorities in this crisis. “No Congressional committee has looked seriously at the conflicts of interest in federal activity on autism in almost 10 years. As part of this process, Congress must examine the Vaccine Injury Compensation Program and how it has been quietly acknowledging autism as a vaccine injury for almost 25 years. We need real inquiry by Congress into this debacle.”
In addition to Insel, his latest appointments to the committee should also go, the Birt report says. “The new members of IACC should all be dismissed, and the new Chair of IACC should commence a new search for committee members.”
Anything short of a complete overhaul at the IACC is a historic, humanitarian failure, the report authors conclude. “To continue to ignore the urgent needs of our most vulnerable population is a moral failing the likes of which our nation has perhaps never seen. Unless we do something drastic immediately, this is destined to be our legacy.”