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Calls to Action

Statement by Peter Bell, EVP, Autism Speaks

February 4, 2009 -- IACC Meeting
February 05, 2009

My name is Peter Bell, and I am Executive Vice President for Programs and Services at Autism Speaks. As most of you know, Autism Speaks is the largest autism advocacy organization in the country. We are dedicated to funding research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; advocating for the rights and needs of those affected by autism; and working to ensure that individuals with autism and their families have access to services, like insurance and therapies, and resources to improve their lives.

In collaboration with many other autism advocacy organizations, Autism Speaks played an integral role in getting the Combating Autism Act drafted, legislated and passed over two years ago; thus we see ourselves as a steward in the process of making sure that the intent of Congress is fulfilled and reflected in the Strategic Plan. I would like to further point out that my colleague Dr. Geri Dawson, Chief Science Officer at Autism Speaks, and I were both members of the Strategic Plan Workgroup that helped develop the list of initiatives that eventually became the research objectives that are now part of the Plan.

I am here to express our concerns about the events that transpired during the previous IACC meeting on January 14th, involving two issues -- the first being the process by which changes were made to the Strategic Plan and the second, the substantive merits of those changes.

Until last month, there was a sense that a genuine partnership was being forged among the public, scientific and medical communities, as well as the federal members of the IACC. In fact, the Strategic Plan, as approved and drafted before the January 14 meeting, had the support of a broad consensus of the autism advocacy community. A significant component of the approved plan was the inclusion of two research objectives relating to vaccine research. These objectives had been approved at the December 12th IACC meeting -- with broad support among the public members as well as several federal members.

Disappointingly, this all changed at the January meeting. The process by which these two objectives were reconsidered and then moved out of the objectives section of the Plan has undermined the trust that had been developed over the past two years. The topic of vaccine research – so controversial and complex by nature -- was not on the published agenda, nor was advance notice given to public members. The decision to revisit it and propose significant changes to the Plan without advance notice and adequate time to respond was unfortunate. It did not reflect the collaborative and transparent spirit with which the IACC had been functioning.

The justifications given by some federal members of the IACC for removing the vaccine-related objectives from the plan were, frankly, either flawed or insufficient. Autism Speaks regrets that because of these breaches in process and trust, we were compelled to withdraw our support for the Strategic Plan, despite the many important and good objectives it embodies, and the tremendous amount of hard work that has gone into its development.

This brings me to our second concern – the merit of the changes that were made to the Strategic Plan:

Autism Speaks supports programs that ensure the public health, including an effective and safe immunization program. Our position regarding vaccine safety and research, which is clearly stated on our website, is that the best way to ensure that parents are confident in the safety of our vaccine program and, at the same time, protect the minority of children who may be at increased risk for serious adverse effects of vaccinations, is to foster collaborative, trusting relationships among the public, the medical and scientific communities, as well as the federal government whose mandate it is to conduct research on vaccine safety. To that end, we advocate for directly and immediately addressing on-going, legitimate questions regarding the safety of vaccines through rigorous science. Authoritative safety studies require time and resources, but quick government action will instill necessary confidence and trust.

Recent discoveries in science have raised new questions about the role of environmental factors in autism, including whether immunizations are associated with increased risk for ASD. As acknowledged in the CDC's draft scientific agenda, fundamental questions have not been addressed, such as whether the use of combination vaccines confers increased risk for adverse events and whether there are subgroups in the general population, such as children with certain genetic or metabolic conditions, that are more vulnerable to serious adverse effects of vaccines, including ASD. Such research could help to identify subgroups of children at risk and develop different vaccine schedules for them, along with recommendations for careful monitoring of adverse effects.

Studies that can examine these questions are clearly feasible. A fruitful strategy for moving forward would be to establish a working group comprised of key representatives of the stakeholder, medical, and scientific communities and the federal agencies involved in vaccine safety research. The goal would be to work collaboratively to review and prioritize the scientific questions that need to be addressed in light of the most recent scientific findings and public concerns.

In conclusion, Autism Speaks still believes the IACC can reclaim the promise the Strategic Plan had following the December 12, 2008 meeting. It is our hope that the IACC will seize this opportunity to renew confidence, trust, and a true spirit of collaboration by incorporating the original, approved vaccine research objectives -- including the same budgetary requirements -- as priority items in the soon to be drafted second version of the Strategic Plan. Individuals with autism and their families -- and the general public -- will be best served through this action.