IACC to take more active role

4 Feb

The U.S. Interagency Autism Coordinating Committee (IACC) met last week. There were presentations on important subjects but for me the real event happened in the final hour, during the discussion. You can get an idea of that from two Autism Speaks articles: IACC Pledges More Assertive Role in Federal Autism Policy and IACC Tackles Healthcare Disparities and Access to Care.

If one looks at Public Law 109-416 (the law based on the Combating Autism Act)

(b) RESPONSIBILITIES.—In carrying out its duties under this section, the Committee shall—
(1) develop and annually update a summary of advances in autism spectrum disorder research related to causes, prevention, treatment, early screening, diagnosis or rule out, intervention, and access to services and supports for individuals with autism spectrum disorder;
(2) monitor Federal activities with respect to autism spectrum disorder;
(3) make recommendations to the Secretary regarding any appropriate changes to such activities, including recommendations to the Director of NIH with respect to the strategic plan developed under paragraph (5);
(4) make recommendations to the Secretary regarding public participation in decisions relating to autism spectrum disorder;
(5) develop and annually update a strategic plan for the conduct of, and support for, autism spectrum disorder research, including proposed budgetary requirements; and
(6) submit to the Congress such strategic plan and any updates to such plan.

If you look at (2) and (3), they constitute a very broad mandate to “monitor Federal activities with respect to autism spectrum disorder [and] make recommendations to the Secretary regarding any appropriate changes to such activities”

This is an area which the IACC has up until not been the primary focus of the IACC, from what I have observed. The IACC has spent much effort, and rightfully so, on developing and updating the strategic plan for autism research.

The IACC is working on a document to offer advice on how autism should be considered in the implementation of the Affordable Care Act and the insurance exchanges the Act will set up.

The meeting started with Tom Insel (chair of the IACC, director of the NIMH) discussing some recent papers in autism. These include studies on elopement, markers of maternal inflammation as a risk factor for autism, an imaging study showing microglial activation in autistic brains, studies by IACC member David Mandell and more.

A presentation was given about the CDC Minnesota Somali Autism Project. The presentation discussed the methodology (using the same system as the ADDM network) and the difficulties in building the infrastructure from scratch. No information on preliminary results.

Jose Cordero spoke about the prevalence of autism in Puerto Rico. It is one of the highest in the United States at 1.6%. This is especially noteworthy given the relatively low prevalence for autism among the Hispanic communities regularly reported. Another presentation was made on the recent “Optimal Outcomes” study, with much discussion afterwards about what “optimal” outcomes really are. Of note was the fact that the study authors never made the statement that people “grow out of autism”, that was an interpretation added by journalists. Anjali Jain of The Lewin Group and Craig Newschaffer of Drexel University spoke about health outcomes among autistics, showing that there are more health issues among autistics. Alan Guttmacher of the National Institute of Child Health and Human Development spoke about the National Children’s study which is starting and will follow 100,000 children’s health outcomes and track possible environmental risk factors.

Public comments were given both orally and written. Unfortunately, there was no time for discussing the comments, which included statements by Dena Gassner, Amy Lutz, Dawn Loughborough and Jake Crosby.

The meeting was recorded by video. (I’ll try to get the embed code to work) http://videocast.nih.gov/launch.asp?17778

By Matt Carey

note: I serve as a public member to the IACC but all opinions here and elsewhere are my own.

One Response to “IACC to take more active role”

  1. Anne February 5, 2013 at 06:45 #

    I’m glad to hear that the committee will broaden its activities under sections (b)(2) and (3). I wonder whether federal activities with respect to ASD that don’t come within the purview of HHS are included. It seems to me that there’s an uncoordinated patchwork of federal activities, including education/vocational rehabilitation, social security and Medicaid coverage, that deal with autism. It’s often difficult for families, and especially for autistic people, to access the programs or benefits that could be available to them. I would hope that an entity like the IACC could work on making federal programs more accessible.

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