Managing Editor's note: Katie Wright, Contributing Editor for Age of Autism wrote this piece for SafeMinds. Reprinted with permission.
By Katie Wright
I first read the Interagency Autism Coordinating Committee (IACC) member roster and thought why does the National Institute for Deafness have a seat on an autism research committee? Then again, maybe there was common ground! Maybe Dr. James Battey of the National Institute on Deafness should take over IACC entirely because he is an expert on the hearing impaired, a condition that seems to affect almost every member of IACC.
IACC was created as a direct result of the hard work of thousands of families with autistic children who called, wrote and even visited their congress people and Senators to get the Combating Autism Act (CAA) passed. Parents organized phone campaigns and sit-ins in offices of non-supportive legislators. My parents, Bob and Suzanne Wright, traveled to DC dozens of times to lobby for our families, in efforts to rectify the near total absence of autism research within the NIH. Families everywhere worked tirelessly, and at their own expense, in order to make the CAA law.
Meanwhile, Secretary Leavitt did nothing to help by allowing the National Institute of Mental Health (NIMH) to remain as lead agency in the effort to answer autism’s riddle and leaving its Director Dr. Tom Insel as the IACC’s Chair. As the scientific community’s understanding of this disorder has evolved, it is apparent that autism has biologic underpinnings that are treatable, meaning that our kids are physically ill – not mentally ill. The nod to NIMH as lead agency continues to place a stigmatism on those affected by autism and delays urgent research by promoting the old association of autism as a mental health disorder.
To add insult to injury, the majority of IACC members are federal employees and out number public members by 2 to 1 and used that advantage to out vote public IACC members on key research objectives during the passage of the committee’s first strategic plan. This despite the consensus on many issues voiced by autism organizations and the public during town hall meetings that public IACC members represented in casting their votes. The feds essentially control decisions on how all autism research dollars should be spent in opposition to public IACC members. This is also contrary to the intent of the Combating Autism Act, as the legislative history specifically directed a portion of research dollars be spent on vaccine research.
To top it off, only 2 of the 6 public seats are occupied by representatives from the autism community, despite formal requests to expand the number of public member positions to balance the committee and provide seats for organizations like Autism Speaks, National Autism Association, Generation Rescue and Talk About Curing Autism. To date there has been no answer. As a result almost none of IACC’s actions reflect the critical research priorities of our 2 million families and operates with no sense of urgency.
The only sense of urgency displayed by Dr. Insel appears to come when adjourning meetings early. Sadly this urgency left 3 mothers and their ASD sons who had traveled great distances, in order to offer public comment, without an audience at the pre-scheduled time for their comment. Undeterred by the negative impact this has on our families, IACC’s website now advises that all meetings could end early, so don’t be surprised if you dial in to hear IACC in session and hear dead air. So much for public input and acknowledging the needs and efforts of the affected struggling to make their voice heard to the committee charged with representing their research interests.
Selective deafness of Insel’s IACC is the most disturbing happenstance. The Combating Autism Act specifically states in section 399c, subsection d, that, (4) “All meetings of the Committee shall be public and shall include appropriate time periods for questions and presentations by the public.” IACC is a federal advisory committee that is charged with taking public input seriously and acting upon the priorities of our families. Instead, IACC “catalogues” all public enquiries and suggestions and puts them into a binder. End of story. When will questions that have been asked receive answers? When will our input as a community be meaningfully integrated? The answer appears to be - when it aligns with the federal pre-approved agenda.
Families are lucky if they are allowed to speak during the tiny public comment portion of an IACC meeting, as comments must be submitted ten days in advance, which does not allow for public comment on the day’s events. While the byzantine manner in which parents are required to obtain approval of their public comment request complies with the letter of the Federal Advisory Committee Act (FACA), it violates the spirit of the act and does not allow for true public participation. That’s right, anyone wanting to make a public comment must submit it prior to the meeting in writing. If a parent doesn’t get their comment in by the deadline set, they don’t get a voice at the IACC’s table. By contrast, public comment at the recent National Vaccine Advisory Committee (NVAC) and the Institute of Medicine (IOM) meetings review of the Centers for Disease Control’s Immunization Safety Office Draft Research Agenda allowed for off the cuff responses from the public. They too are FACA reporting committees. Guess they understand the spirit of FACA, which is to provide transparency and public participation at these types of committee meetings.
Last week during the Senate’s hearing on autism research Senator Tom Harkin repeatedly asked Dr. Insel why IACC will not invest in a comparative study of the unvaccinated and vaccinated populations to investigate differences in total health outcomes. Parents, former Director of NIH Bernadine Healy and nearly every autism organization want this research done. Senator Harkin wants it done and is not alone in terms of the support of other members of the Health and Human Services Committee. Senator Harkin also noted that many parents are choosing not to vaccinate their children at all, and therefore it would be possible to collect data on this population along with how many individuals in unvaccinated families suffer with autism. Dr. Insel’s response was that the vaccine autism research question was closed. When the Senator asked why there has not been research studying the effects of the massive increase in vaccines given to babies under 2, Insel’s response was that it would be a waste of money. When the Senator insisted that this is an important question to answer, given that autism cases have skyrocketed along with the exponential increase in the vaccine schedule, Insel stated that the correlation doesn’t equal causation. Fair point, but given the critical research gaps revealed in the National Vaccine Advisory Committee report - why not just find out? Again, Insel said no way.
Full video of the Senate Appropriations Committee’s, Hearing on Autism Research may be found at the C-Span website, here..
It has become crystal clear that Insel is deaf in terms of hearing anyone outside the small community of people who says the vaccine safety debate has been settled. He has completely ignored the educated position of the autism community; the implications of autism specific research indicated in the NVAC’s report that should be taken up by the IACC; the mandate for vaccine safety research as stated in the Combating Autism Act; and the concerns held by individuals like Bernadine Healy with regard to the weaknesses in science that Insel stands on. With continued rebuffing of requests to expand its public membership component to bring into balance public and federal representation the status quo is likely to continue and give Insel cover in remaining non-responsive to requests from CAA’s major sponsor, Senator Tom Harkin, as well as other members of Congress. In short, Insel appears to be accountable to no one.
Our community deserves better representation and real leadership and to that end, SafeMinds has requested that Secretary Sebelius investigate Dr. Insel’s actions and reinstatement of vaccine objectives that were removed under false premises in January from the IACC’s Strategic Plan.