Summary from IACC Meeting to Finalize Strategic Plan for Autism Research - Autism Speaks Withdraws Support for the Strategic Plan for Autism Research
(January 15, 2009) - The Interagency Autism Coordinating Committee (IACC) met on Wednesday, January 14, at the NIH Neuroscience Center Building in Rockville, MD. The IACC is tasked by the Combating Autism Act of 2006 (CAA), P.L. 109-416, with 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.
Wednesday's meeting was scheduled to finish consideration of the Strategic Plan for Autism Research. The plan is comprised of six research areas aimed at addressing consumer-focused questions about autism: When should I be concerned? How can I understand what is happening? What caused this to happen and can this be prevented? Which treatments and interventions will help? Where can I turn for services? What does the future hold?
Each of the six research areas had been approved at prior meetings with IACC members voting to include 42 research objectives.
The published agenda for Wednesday's meeting allocated time to finish the Introduction section of the plan and review and make decisions on budgetary requirements. Additions made to the Introduction under the heading "Resources" included the need to collect biospecimens of individuals who do not have autism and the need to attract a cadre of rigorously trained researchers. The IACC also voted to add "advocacy organizations" to the list of those who have vital roles to play in shaping research in the Community Engagement section of the Introduction.
IACC also agreed to include language that Lyn Redwood, a public member of the committee, submitted to articulate the urgency of addressing autism. This language is to be reviewed by the Office of Autism Research Coordination and a draft will be circulated before the plan is complete. The IACC rejected a submission from Ms. Redwood to add three new passages to the cross-cutting themes section of the Introduction to the plan.
Upon completion of the Introduction section, the agenda stated that the IACC would review and decide budget recommendations. Instead, IACC considered revisions to previously approved sections of the plan. IACC Chair Tom Insel, M.D. said concern had been raised that the IACC did not have enough information when it voted to include two research objectives relating to vaccines at the December 12, 2008 meeting.
Specifically, Ed Trevathan, M.D., Director of the National Center on Birth Defects and Developmental Disabilities at the CDC, spoke to a fear that the feasibility study to evaluate the safety of vaccines in vaccinated versus unvaccinated populations would be duplicative to efforts underway by the National Vaccine Advisory Committee (NVAC). In addition, Dr. Insel expressed concerns about potential conflicts of interest related to pending Omnibus Autism Proceeding on vaccine injuries involving HHS. Ultimately, the vaccine research objectives were the only objectives reconsidered and both were moved from the research objectives section of the plan to research opportunities. The IACC decided to send a letter to NVAC expressing a desire to coordinate interest on autism research.
The remaining agenda item was consideration of the budgetary requirements. The remaining 40 research objectives' budgetary requirements total approximately $789 million. The proposed budgetary requirements were adopted by the IACC with a few adjustments.
The plan is expected to be circulated for final approval over the next week and sent to the new Secretary of HHS.
Given the unexpected change in the final approval process, Autism Speaks has withdrawn its support of the Strategic Plan and called for the new Administration to restore the intent of the CAA to respect and value community input. For more information on Autism Speaks' position, please see the following statement:
- Autism Speaks Withdraws Support for Strategic Plan for Autism Research, Decries Unexpected Change in Final Approval Process
To read Autism Speaks' Statement on Vaccine Safety and Research, click here.