Governmental Affairs Update

A Report on What We Asked Congress For and What We Got

In April 2004, dozens of NAAR volunteers visited their Congressional representatives and urged them to increase funding for autism research as part of NAAR's coordinated efforts to advance research at the federal level.

NAAR Trustee Ann Gibbons, chair of NAAR's Governmental Relations Committee, has summarized where we now stand on the issues addressed with members of the Legislature earlier this year.

We asked our Representatives to increase by $8 million the autism epidemiology program at the CDC in the FY2005 budget over the FY2004 budget.

What transpired: In the House bill, the CDC was provided $15,300,000 for its autism epidemiology program, including the CADDRE and ADDM Network, and $2,700,000 to build on last year's new Autism Awareness and Education Campaign, which is a $2 million increase over last year's figure of $16 million. Essentially, we asked for $8 million and got $2 million. The Senate bill only proposes an increase of $1 million. NAAR will keep you posted when these bills become law.

We asked our Representatives to support language in the appropriations bill that calls on the NIH to:

1) devote sufficient resources to the autism research matrix;

2) coordinate with autism organizations already funding research initiatives to ensure the most efficient use of resources; and

3) continue the work of particular areas cited in the matrix, including genetic and behavioral characterizations of the disorder and screening and early diagnosis.

What transpired: The NIH language contained in the House bill closely reflects NAAR's request, specifically as it pertains to working with the autism research matrix and encouraging the NIH to devote sufficient resources to the matrix and coordinating the autism organizations already funding research initiatives to ensure to most efficient use of resources. We also talked about parts of the research matrix that include genetic and behavioral characterization of the disorder; this was included to ensure that some attention is paid to the NAAR Autism Genome Project. In the House bill, NAAR got all the things we wanted in the NIH language. In the Senate, the bill's language is not as specific. NAAR will keep you posted when these bills become law.

We asked our Representatives to support a $10 million request for peer-reviewed research on autism spectrum disorders in the Defense Health account in the Fiscal 2005 Department of Defense Appropriations bill.

What transpired: While we didn't achieve a specific line item amount in the Department of Defense budget, autism was in fact added for the very first time to the Peer Reviewed Medical Research program in the Department of Defense budget. It is an excellent start for the autism community. This legislation has been enacted into law. The language reads, as follows:

PEER REVIEWED MEDICAL RESEARCH PROGRAM

“The Senate recommended $50,000,000 for a Peer Reviewed Medical Research program. The conferees agree to provide $50,000,000 for this program, and recommend the following projects as candidates for study: acellular human tissue matrix research; amyotrophic lateral sclerosis; alcoholism research; anti-radiation drug development; autism; blood-related cancer research; Interstitial Cystitis; childhood asthma; chronic pain research; conjugate vaccines to prevent shigellosis; diabetes research; Duchenne's disease research; epilepsy research; Lupus and Lupus Biomarker Research; orthopaedic extremity trauma research; osteoporosis and bone-related diseases; Padget's disease; post traumatic stress disorders; social work research; Volume Angio CAT (VAC) research; and autoimmune diseases such as scleroderma and Sjogren's syndrome.”

The conferees directed the Department to provide a report by March 1, 2005, on the status of this Peer Reviewed Medical Research Program. The amount of this pool of money that will go to autism research will depend on the quality of proposals submitted to the Department of Defense.

NAAR extends its sincere thanks to all volunteers and supporters who participated in our advocacy efforts last April. Plans are currently underway to develop NAAR's 2005 Capitol Hill Day event, which is scheduled for April 19, 2005. If you are interested in joining NAAR for this day, mark your calendars. If you have not taken part in this effort before, but would like more information, please e-mail Joe Guzzardo, NAAR's Communications Director, at jguzzardo@naar.org

In the meantime, please stay in touch with your Legislators in the House and Senate via email or phone calls and thank them for supporting NAAR and the autism community on these important issues.