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December 10, 2002
Mr. Chairman, Members of the Committee. I am Dr. Steve Foote, Director of the Division of Neuroscience and Basic Behavioral Science at the National Institute of Mental Health. I am the witness representing the National Institutes of Health (NIH) today because I play several roles in the coordination, planning, and oversight of autism research at NIH. For example, I serve as a scientific program staff member of the NIH internal Autism Coordinating Committee (NIH/ACC), a long-standing body that serves to coordinate autism research NIH-wide. Also I have played a major role in organizing and implementing the NIH centers program called for in the Children's Health Act of 2000 (P.L. 106-310), which we have named the Studies to Advance Autism Research and Treatment (STAART) Centers program. Finally, I have served a leadership role in the establishment and operation of the Department of Health and Human Services (HHS), Interagency Autism Coordinating Committee (IACC) that was created under a provision of the Children's Health Act of 2000.
I appreciate the opportunity to talk with you about NIH support of research on autism. I am a neuroscientist who has been interested in the brain and its disorders throughout my career, and, like others, I have found autism to be a particularly challenging mystery. My view of this disorder has been broadened and deepened by my continuing interactions with members of families with autistic children and adults. I feel their urgency: an affected child cannot wait for research before growing up. Each day, each potential improvement, is crucial. I would like to acknowledge the important role of families and advocacy groups in our efforts. They have not only raised the visibility of autism and challenged assumptions, they have pushed for accelerated and expanded research activities.
I testified before this Committee earlier this year, but now there is even more recent progress to report. The basic research on autism that is sorely needed is moving forward at an ever accelerating pace, as is continued genetic research, and studies of the etiology of various autism spectrum symptoms including communication disorders and interpersonal difficulties. Autism biomedical research is rapidly expanding as the scope and level of detail of scientific topics under active investigation is aggressively broadened. Several weeks ago I attended the Second Annual International Meeting For Autism Research. This meeting was an exciting forum for this rapidly growing field. Extremely important funding programs from voluntary organizations and other federal agencies, along with very substantial increases in NIH funding of this area that have occurred over the past several years, have provided the financial support underlying this growth in volume and quality of research. Other driving forces have been the advances of closely related biomedical research fields, such as genomics and neuroscience that have provided the necessary knowledge and tools for more powerful and promising insights into the biological nature of autism. In summary, biomedical research into autism is advancing rapidly, and NIH is playing a major role in this progress.
I am also pleased to report that as part of the enhanced activities in this area NIH has made much progress in implementing the provisions of the Children's Health Act of 2000 that focused on NIH research activities related to autism. In terms of the requirement for a new centers of excellence program, NIH has issued a total of three Requests For Applications (RFA) to implement, on a fast-track, the STAART Centers program. An RFA is a clear statement to the field – setting aside funds – that NIH invites research in a particular area. The first RFA was for developmental grants to provide funds for teams of investigators as they prepared to compete for full center support. Six grants were awarded under this RFA. The second RFA was for an initial round of competition for full center support. A number of applications were received, reviewed in March 2002, and two centers were funded. A second round of competition for full center support is in mid-cycle, and the applications are being reviewed yesterday and today. When the successful applications from this round of competition are funded next year, the full network of at least 5 centers stipulated by the law will be in place. The 5 participating NIH institutes [NIMH, the National Institute of Neurological Disorders and Stroke (NINDS), the National Institute of Child Health and Human Development (NICHD), the National Insitute on Deafness and Other Communication Disorders (NIDCD), and the National Insitute of Environmental Health Sciences (NIEHS)] have established a pool of $12M per year (including $8M per year from NIMH) to fund this network. This is $60 million at a minimum.
Another component of the Children's Health Act was the establishment of an Interagency Autism Coordinating Committee - the IACC. The Secretary of the Department of Health and Human Services delegated to NIH the authority to organize the IACC, and NIMH was asked to lead this effort. The IACC has been organized and has now had three semi-annual meetings. It is actively engaged in its mandate to enhance communication and effective interaction among the several agencies that support or conduct autism-related research, service, or educational activities, and it has engaged family and advocacy groups, largely through the public members that were appointed by the Secretary. The NIH/ACC provides a continuing framework that allows program scientists and directors of the relevant institutes to come together to plan and conduct research, and it communicates closely with the IACC.
In addition to these activities, NICHD and NIDCD have competitively renewed their long-standing Collaborative Programs of Excellence in Autism (CPEA). The NIH is fully committed to this important program, and will continue its support for both CPEA and STAART programs for several years into the future. In yet another recent enhancement of the NIH autism research portfolio, NIEHS has funded two centers focused on autism research.
We at the NIH are at a heightened state of awareness concerning the need for more research on autism: due to the clear magnitude of this major public health problem and due to the work of many people within and outside this room. And, we have been making progress. In FY 1998, NIH support for autism research totaled about $26M: by FY 2001, the total was about $55M. To put this in perspective, the NIH commitment to autism research more than doubled in these few years. In terms of the specific questions in your letter of invitation, there are a number of active and planned projects that address the concerns you raise. NIH recently furnished you with a summary of the research activities sponsored by the National Institute of Allergy and Infectious Diseases and NIEHS designed to address questions about thimerosal, ethyl and methyl mercury, and the search for other environmental risk factors for autism. Several institutes are sponsoring numerous projects dealing with treatment interventions for autism, and the STAART Centers program will include a primary emphasis on such studies.
In summary, NIH is on schedule in terms of implementing the letter and the spirit of all the aspects of Title I of the Children's Health Act, including a broadly based increase in autism research support, the initiation of a new centers of excellence program, an enhancement of genetic and other research resources, and the establishment of the IACC.
That concludes my testimony. I would be happy to answer any questions.
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Last revised: May 13, 2003