The Interagency Autism Coordinating Committee (IACC) recently released their annual report on the portfolio of autism research funding for 2009. The report reveals that over $314 million dollars was spent on autism research from both federal and private sources. This report comes at a crucial time when the Combating Autism Act of 2006 (CAA) is under consideration for renewal. The CAA instigated the formation of the IACC which helps guide the appropriate use of federal funds for autism research.
So what was funded in 2009? The IACC breaks down funding into seven categories that stem from the key questions in the IACC’s strategic plan. The questions are listed in the figure below. In 2009, almost one-third of the funding (32% of total) went toward identifying risk factors for autism spectrum disorders (ASD).This category also received the greatest funding in 2008. The second and third most funded categories were investigations of the underlying biology of ASD (20%) and the development of treatments or interventions (20%). The categories receiving the least funding were services research (3%) and studies on autism during adulthood (<1%). The IACC noted these categories as special targeted areas for increasing funded projects in future years.
2009 included significant funding from the American Recovery and Reinvestment Act (ARRA) that Congress authorized earlier in the year. The National Institutes of Health used Recovery Act money to fund autism research with $64 million dollars that supported 141 new projects, which accounted for 33% of NIH’s autism research in 2009. The ARRA grants were targeted to address the IACC’s strategic plan questions and an analysis of those grants separately looks similar to the overall portfolio of grants. The greatest percentage of funding was allocated for studies of risk and underlying biology and least for services studies and understanding adult outcomes. The ARRA infusion of federal funds significantly increased the dollar amount of federal funding for autism research over 2008.
Overall, funding for autism projects increased by 21% from 2008 to 2009, much of this due to the ARRA funding.
The analysis also included a breakdown of funding by federal and private organizations. By far NIH supported the greatest number of projects (516) and granted the most money ($197 million) overall. The second and third biggest supporters of autism research were private organizations. The Simons Foundation granted $51 million over 98 research projects in 2009. Autism Speaks supported 220 projects with $23 million dollars raised from generous donations of families and loved ones who want to see better lives for all who struggle with ASD.
These numbers show the impact that foundations such as Autism Speaks can have on the direction of autism research as they typically support ideas deemed too “risky” for NIH funding. Indeed, a recent analysis conducted on Autism Speaks’ grants showed that for each dollar invested in research, investigators leveraged $10 more in additional funding. Researchers were able to use our early investment to further their studies and advance our collective understanding of autism.
Autism Speaks’ Chief Science Officer, Geri Dawson, Ph.D., says “Although we are pleased that funding increased for ASD research, we are still in great need of increased funding so we can make faster progress. Notably, the current IACC report shows that more funding needs to be directed toward research on adults and services. Basic scientific discoveries need to be translated into real world solutions that impact the daily lives of people struggling with autism.”
The timing of this report is critical. As previously mentioned, the CAA is now up for renewal. Without this support we would not have the IACC , which brings together stakeholders from the federal government, private research organizations, and community leaders to consider the needs of the community as a whole so we can best invest research dollars to solve pressing questions that actually impact the lives of real people.
Last month, new reauthorization bills were introduced with strong bi-partisan backing in the Senate by Senators Robert Menendez (NJ-D) and Mike Enzi (WY-R), and in the House by Autism Caucus Co-chairs Rep. Chris Smith (NJ-R) and Rep. Mike Doyle (PA-D). President Obama has pledged to sign a CAA reauthorization into law this year. The Combating Autism Reauthorization Act of 2011 (CARA) would extend the CAA – which includes funding for critical research, services and treatment, and contains measures to ensure cost-efficient planning and coordination of these efforts – for three years at current funding levels.
As Autism Speaks co-Founder Bob Wright stated last month upon the introduction of CARA, “Bi-partisan support for any legislation today is rare, and reflects our elected leaders’ understanding of the severity of the challenges we face. It is imperative that CAA is reauthorized, so that the vital work in research, treatment and services can continue.”
The numbers in this report are just one way to quantify the investments that are being made in our understanding of autism spectrum disorders, from risk factors to the effective delivery of services. We will continue to keep watch and advocate for more research that is aimed at improving lives today and transforming lives tomorrow.
The entire report is available for download here.