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January 18, 2011 IACC Meeting Summary

January 19, 2011

The Interagency Autism Coordinating Committee (IACC) met on Tuesday, January 18, at the Neuroscience Center in Rockville, MD.

IACC Chair and NIMH Director Thomas Insel, M.D. opened the meeting with a presentation on research developments since the last IACC meeting. Dr. Insel identified several studies of interest to the autism community, including the following subjects: Aberrant striatal functional connectivity; flame retardants and endocrinal disruption; residential proximity to freeways; closely-spaced pregnancies; neonatal jaundice; and interventions targeting development of socially synchronous engagement in toddlers.

IACC members followed with updates from their organizations on items of interest. Lee Grossman, President and CEO, Autism Society (ASA) and IACC Member, reported that ASA will be hosting its annual conference in Orlando in July.

Walter Koroshetz, M.D., Deputy Director, National Institute of Neurological Disorders and Stroke and IACC Member, provided an update on the Norway Birth Cohort Study, which includes 107,000 children followed from pregnancy, including cord blood samples.

The Committee then received an update on the Affordable Care Act (ACA) and Health Insurance Coverage from Cheryl Ulmer, Study Director, "Determination of Essential Health Benefits" Study, Institute of Medicine (IOM). At the request of the Secretary of HHS, the IOM is undertaking a study that will make recommendations on the criteria and methods for determining and updating the essential health benefits package. The IOM will not define specific service elements of the benefit package. Instead, the IOM will review how insurers determine covered benefits and medical necessity and will provide guidance on the policy principles and criteria for the Secretary. The IOM's report to HHS is expected in mid-September. The IOM is looking at typical employer plans, the implications inclusion of state mandates, and nondiscrimination based on age, disability or expected length of life.

Stuart Spielman, Esq. Senior Policy Advisor, Autism Speaks briefed the IACC on items of importance to the autism community in the context of ACA and the IOM study. In providing guidance on the policy principles for the Secretary, the IOM should consider the health needs of individuals with autism. These needs informed the ACA through the Menendez Amendment in the Senate and the similar amendment by Representatives Doyle (Congressional Autism Caucus co-chair), Deal, and Engel in the House. Section 1302(b)(1) of the ACA lists ten general categories of essential health benefits, including “Mental health and substance use disorder services, including behavioral health treatment” (section 1302(b)(1)(E)). The reference to behavioral health was added by amendment for clarification in both the Senate and the House. In offering his amendment, Senator Menendez specifically pointed out that behavioral health treatments are critical for individuals affected by autism as well as other disorders. For more details about the IOM and IACC presentations, visit the Autism Speaks blog.

Jeffrey Sell, Esq., Vice President for Public Policy, Autism Society, also presented on autism and the IOM's study on determining essential health benefits for implementation of ACA. Mr. Sell stated that, in determining the essential health benefits, the Secretary must give effect to each provision in ACA, including the mandate of section 1302(b)(1)(E) for behavioral health treatment for individuals with autism

The IACC meeting moved its attention to completing updates to the Strategic Plan for Autism Research for 2011.

The Committee voted to include language in the Introduction of the plan that was recommended by the Strategic Planning Subcommittee which illustrates the prevalence of autism as compared to other diseases. It also voted to retain language citing the cost of the disease. The cost to society of ASD is currently estimated to be $35-$90 billion annually, the higher estimate being comparable to Alzheimer's disease (Ganz, 2007; Järbrink & Knapp, 2001). Finally, to the Cross-cutting themes of the Introduction, the IACC voted to add a theme that people with ASD, with education and supports, aspire to lead self-determining lives. For a more detailed description of this discussion, read Geri Dawson's blog post about the IACC meeting.

The Committee voted to approve the budgetary requirements associated with each objective to the plan. The budgetary recommendations were provided by organizations with experience in funding research in those areas. The draft recommendations, which were approved, can be found here.

With these final changes, the Committee voted unanimously to send the Strategic Plan for 2011 to the Secretary of HHS.

The IACC continued its updates from IACC members on items of interest to the Committee. Autism Speaks' chief science officer and IACC member Geraldine Dawson, Ph.D. reported on a meeting on translational research co-sponsored by Autism Speaks and Pfizer. The initiative is intended to promote collaboration with industry and research that will focus on outcome measures. The recommendation from the meeting was to build consensus working groups that will include FDA when working toward functional goals in treating autism.

Alison Singer, M.B.A. President, Autism Science Foundation, gave an update of the Autism Science Foundation's work. The Foundation is in the process of awarding second round pre-doctoral grants. It is also going to be awarding scholarships for stakeholders to attend the 2011 International Meeting for Autism Research (IMFAR) meeting.

The IACC turned its attention to a draft letter on ASD-related wandering behavior to the Secretary of HHS written by the subcommittee on safety issues. The committee considered whether a letter was the best way to address the issue, or if the committee should investigate the issue further. It was noted that the IACC's statutory responsibility is to advise the Secretary on autism. The committee ultimately voted to send a letter that would urge the secretary to collect data on ASD-related wandering and investigate the use of medical sub-classification coding for ASD wandering.

The Committee discussed its work for 2011 during the remainder of the afternoon session. The Office of Autism Research Coordination (OARC) reported that the 2009 portfolio analysis will be ready in the next couple of weeks. Additionally, OARC will be commencing the data request for the 2010 portfolio analysis. The data request aims to depict how funded research corresponds with the 2011 Strategic Plan. The IACC also discussed better ways to show how research is leveraging funding, resulting in publications, and providing an impact on autism research. OARC will update the IACC at the spring meeting and expects to have the completed analysis by September 2011.

The IACC will also need to complete its 2010 summary of advances which will require additional input from the IACC members.

The Committee also discussed the potential for workshops during 2011. It will consider another services workshop or a town hall meeting on safety. It was noted that NIEHS and Autism Speaks are planning a workshop on bio-informatics and environmental issues. IACC Chair and NIMH Director Thomas Insel, M.D. reminded the IACC that the Combating Autism Act of 2006 sunsets the IACC on September 30, 2011. This makes planning workshops beyond that date impossible.

Finally, the IACC discussed the Public Comments portion of the meeting in which Ms. Caroline Rodgers discussed environmental factors and autism and James Moody, Esq. presented on behalf of the National Autism Association its disappointment in a shift in focus among safety subcommittee members who feel the right to live should not take priority over one's right to independence and self-determination. In response to Ms. Rodgers presentation, Walter Koroshetz, M.D., Deputy Director, National Institute of Neurological Disorders and Stroke, highlighted a recent CDC-Kaiser study which found no association between ultrasounds and autism.

The IACC is next scheduled to meet on Monday April 11.