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April 30, 2010 IACC Meeting Summary

May 09, 2010

The Interagency Autism Coordinating Committee (IACC) met on Friday, April 30, at the Ronald Reagan Building in Washington, D.C.

Health and Human Services Secretary Kathleen Sebelius and National Institutes of Health Director Francis Collins were in attendance to kick off the meeting. Secretary Sebelius announced the new members of the IACC, including Autism Speaks' chief science officer Geraldine Dawson, Ph.D. (Read a blog post by Dr. Dawson about her first IACC meeting as an IACC committee member). Secretary Sebelius also highlighted the increase in autism spending to $196 million for FY09 due to the Recovery Act. Director Collins discussed the seriousness with which NIH will consider the Strategic Plan for Autism Research. He emphasized the charge for researchers to understand the gene-environment interaction relating to autism. He also put the $196 million in NIH spending in historical context of autism spending of $40 million in 1999. Dr. Collins reported to the IACC that NIH Directors met last Thursday on accelerating therapeutics for clinical benefit. He said the Affordable Care Act gave NIH new direction in this area through the provision for the Cures Acceleration Network.

Following the Secretary's and Director's remarks, Dr. Dawson briefed the IACC on the Autism Treatment Network (ATN). ATN is an Autism Speaks program started in 2005 that is designed to address the issues of barriers to access in health care; lack of physician training; and the lack of clinical guidelines for autism treatment. ATN is comprised of 14 centers and 126 physicians. It provides care for over 5,000 children and adolescents with autism and collaborates with the Association of University Centers on Disabilities (AUCD) LEND professional training program. In 2008, ATN was awarded a 3-year grant funded by the Health Resources Service Administration (HRSA) and the Maternal Child Health Bureau (MCHB) - under the Combating Autism Act (CAA) – to be the Autism Intervention Research Network on Physical Health (AIR-P). This initiative provides additional funding to the ATN to conduct projects aiming at having direct and positive impact on the physical health and well being of children and adolescents with ASD. ATN's model for growth is to expand beyond 14 sites thereby improving access to care; to disseminate evidence-based findings through professional training organizations; and to expand funding for clinical research, including for a bio-repository.

Peter Van Dyck, HRSA Associate Administrator for MCHB and a federal member of the IACC, described the valued partnership between HRSA and ATN, as one of its two competitively-awarded research networks under CAA. He also highlighted the importance of ATN's leveraging of HRSA's existing LEND projects.

Following the presentation, IACC Chair Thomas Insel, M.D. reiterated for the IACC that provisions of the Combating Autism Act, including those that funded ATN, are due to expire in 2011. He emphasized that the ramifications of this legislative situation was something the committee needed to consider sooner rather than later to adequately advise the Secretary on issues related to autism treatment.

Susan Swedo, M.D., Senior Investigator, Behavioral Pediatrics Section, NIMH, also presented on the development of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). There will be another period of public comment on the proposed DSM changes, followed by another set of revisions. Several IACC members expressed concern that the new guidelines could be confusing and risk denial of service. The IACC agreed to engage its public member organizations in ensuring that feedback is provided to the DSM-5 task force.

NIDCD Director and IACC federal member James Battey, M.D. provided a research update on stem cells. In addition to giving background on the various types of stem cells, he informed the group on the November 2007 discovery of Induced Pluripotent Stem Cells, which are reprogrammed to behave like Embryonic Stem Cells (ESC). Also, an ESC therapy has received FDA clearance for the first human clinical trial, which will be for a spinal cord injury. The impact of stem cell research for autism is still unknown.

Helen Tager-Flusberg, Ph.D., Director of Boston University's Laboratory of Developmental Cognitive Neuroscience, presented on a recent NIH Workshop on Non-verbal ASD. This workshop is an extension of a previous effort on assessment and treatment of non-verbal autism that was sponsored as part of Autism Speaks' High Risk High Impact Initiative. The workshop was convened to discuss future directions of assessment research. The group discussed ways in which to develop a novel assessment that would be more effective. It also reviewed existing interventions and their utility rates in the home and classroom. Its next steps are to recommend measures and benchmarks and to identify gaps. IACC members asked if the working group could determine the percentage of ASD individuals who are non-verbal.

In the final research update, Rosaly Correa-de-Araujo, M.D., MSc, Ph.D., Deputy Director, HHS Office on Disability, presented on the effort underway at HHS to build infrastructure for Comparative Effectiveness Research (CER). The Recovery Act (ARRA) contains $1.1 billion for comparative effectiveness research. CER compares treatments and strategies to improve health. This information is essential for clinicians and patients to decide on the best treatment. It also enables our nation to improve the health of communities and the performance of the health system. The IACC decided it should review existing data more thoroughly for evidence of better outcomes for people with autism and related disabilities.

Finally, the IACC heard the recommendations of the Planning Subcommittee for the Strategic Plan which is updated annually. It was determined that the IACC needs to prioritize measuring progress on existing plan this year and include new objectives, when warranted, based on major new discoveries. The IACC will seek assistance for the Plan's updated version through a new Request For Information and another scientific workshop in the Fall. Additionally, it will more closely monitor other workshops, including NIEHS's forthcoming workshop on environmental factors and Autism Speaks workshop on drug development. There will also be a services research workshop in the Fall. The Planning Subcommittee will draft the revisions of the Strategic Plan for the full IACC Committee's approval.

The next IACC meeting is on July 16, 2010.