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Calls to Action

Why Do Dollars for Autism Go Down When Prevalence Is Up?

Testifying before House Appropriations Committee on March 29, Peter Bell, Autism Speaks executive vice president for programs and services, said the nation's autism community is growing increasingly impatient with what it views as an inadequate federal response to the "epidemic" of autism. Read Bell's prepared testimony below. You can follow Peter on Twitter @PHBell15.

 

TESTIMONY PRESENTED TO THE HOUSE APPROPRIATIONS SUBCOMMITTEE ON LABOR, HEALTH AND HUMAN SERVICES, EDUCATION, AND RELATED AGENCIES 

 
BY PETER H. BELL, EXECUTIVE VICE PRESIDENT FOR PROGRAMS AND SERVICES AT AUTISM SPEAKS
 
Chairman Rehberg, Ranking Member DeLauro, and members of the subcommittee, thank you for the opportunity to offer testimony on the importance of continued funding for autism.
 
My name is Peter Bell and I am executive vice president of programs and services for Autism Speaks. My responsibilities at Autism Speaks include overseeing the foundation’s family services and government relations activities. I also serve as an advisor to our science division. Autism Speaks is the world’s leading autism science and advocacy organization. Since its inception in 2005, Autism Speaks has committed over $173 million to autism research as well as developing innovative resources for individuals with autism and their families. Our mission is to change the future for those who live with autism. We do this through funding science, raising awareness, helping families and advocating for those who live on the spectrum.
 
I am also the proud father of a child with autism. His name is Tyler and he recently turned 19. In 1996 when my wife and I first heard the words “your son has autism,” we were stunned. Our only reference to autism at the time was from the Oscar-winning movie “Rainman.” We had never known anyone with autism, nor did we know any families who had a child with autism. I suspect this would have been true for most of you on this committee. However, today, I’m willing to wager that every one of you personally knows someone or some family who is touched by autism. Each year, nearly 50,000 families hear those same words -- “your child has autism.”
 
Twenty years ago, the experts estimated that one of every 2,500 children had autism. The latest statistic is one in 110, one in 70 for boys. On Thursday March 29th, the Centers for Disease Control and Prevention (CDC) is expected to announce a new prevalence rate that we suspect you will find even more disturbing. Increasingly we hear the word “epidemic” associated with autism in America. But we at Autism Speaks are hearing something else from the families in our community and it is getting louder by the day.
 
And that is the question, “what is our government doing to confront this public health crisis?” We are increasingly frustrated and frankly confused by what appears to be a lack of will from Washington. When the number of people on the spectrum is going up, why would the dollars for autism research and prevention be going down?
 
When Bob and Suzanne Wright founded Autism Speaks in 2005, they were shocked that a disorder as prevalent as autism commanded so little in terms of resources devoted to research and treatment when compared to other, less common disorders. Working together with thousands of families affected by autism, we were able to enact the Combating Autism Act of 2006. Signed by President Bush, this historic act was considered to be the most comprehensive piece of single-disease legislation ever passed by Congress. Last year, working with many of you in bipartisan fashion, the CAA was reauthorized when President Obama signed a three-year reauthorization into law on September 30th.
 
Autism Speaks and the one million plus members of our community are of course grateful for this funding. But we also recognize it provides but a fraction of the billion-dollar-a-year commitment that had been promised by President Obama, a commitment that better reflects the actual need for funding meaningful research, treatment and services. That disappointment has now been compounded by fears that the funding that was authorized just last September may now be in jeopardy as a result of this year’s appropriations process.
 
Funding for the CDC to continue prevalence research under the President’s budget request was $700,000 below the $22 million authorized funding level and then inexplicably incorporated within the Prevention and Public Health Fund created under the Affordable Care Act. As you know, recent legislation reduces the fund by 20% in FY 2013, further jeopardizing the CDC’s autism surveillance activities. Since 2000, funding for this work has always been included within the CDC’s total discretionary budget authority. It should continue there. Autism Speaks requests that you include $22 million for autism activities within the National Birth Defects Center, within CDC’s discretionary budget authority.
 
Further, we urge you to fully fund the basic and clinical research initiatives for autism at the levels called for under the Combating Autism Reauthorization Act. Specifically, we ask you to support at least $161 million for the NIH’s autism research programs and $48 million for HRSA’s autism research, treatment and training activities.
 
As I mentioned earlier, Autism Speaks has committed more than $173 million through private fundraising to scientific research studies, fellowships, and scientific initiatives. Other private foundations have contributed in excess of $125 million. But we can’t do this alone. We ask that Congress restore full funding as authorized under CARA for autism research, surveillance and treatment. And we ask that Washington treat autism as the epidemic it has become.