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Autism Speaks Testifies at Congressional Hearing

June 1, 2011 8 comments

This guest post is by Andy Shih, Ph.D., the Vice President of Scientific Affairs at Autism Speaks.

When Peter Bell, our EVP of programs and services, first told me about the possibility of testifying at a hearing Congressman Chris Smith (R-NJ) was holding on a global perspective on autism, I did a double take. It was not surprising that Congressman Smith, a long time friend of the community who with Congressman Mike Doyle (D-PA) had just introduced the Combating Autism Reauthorization Act of 2011 in the House last week, is interested in autism. But the fact that he wanted to learn more about the international autism community, especially in Sub-Saharan Africa, had me wondering what could have led the congressman from Brick Township, N.J., to the Townships of South Africa.

It turned out that like many others in our community, Congressman Smith and his colleagues on the House Foreign Committee’s Subcommittee on Africa, Global Health, and Human Rights, understand that autism does not discriminate based on ethnicity or socioeconomic status, and that the only way to speed answers to all individuals and families struggling with this disorder around the world, including those in the U.S., is through international collaboration.

“The benefits of international collaborations and cooperation are multidirectional,” said Congressman Smith in his opening statement at the hearing yesterday afternoon.

In addition to Stuart Spielman and Kevin Roy from our crack government relations team, I was joined at the hearing by Dr. Tom McCool, CEO of Eden Autism Services in New Jersey, Ms. Brigitte Kobenan, founder of Autism Community of Africa, and via teleconference, Ms. Arlene Cassidy, CEO of Autism Northern Ireland. We spent a few hours with members of the subcommittee discussing barriers to progress, such as lack of awareness, capacity and expertise, especially in low and middle income countries.

We also touched on the unique scientific opportunities available and the lessons we can learn from them. For example, we explored the implications of the recently published, surprisingly high prevalence estimate from South Korea; an epidemiology study Autism Speaks funded in a region of South Africa endemic for AIDS to explore the potential risk of a compromised immune system on brain development (link to KZNU study); and the promise of eHealth and distance-learning technologies in the global dissemination of best practices.

Importantly, Congressman Smith credited a trip he took to Lagos, Nigeria, in 2007, where he learned firsthand from parent advocates the enormous daily challenges they face with little or no government support, as the impetus for the Global Autism Assistance Act that he first introduced in 2008 (HR 5446). He is planning to reintroduce the legislation later this week and wants to encourage the “Administrator for the United States Agency for International Development (USAID) to establish and administer a health and education grant program to support activities by nongovernmental organizations and other service providers focused on autism in developing countries…”

“Concerted actions are required to overcome the global challenges to effectively address autism and other developmental disabilities,” Congressman Smith concluded. “We need to continue to help increase awareness of autism at all levels and in all countries, to advocate for the inclusion of developmental disabilities in national and state health policies, to increase the availability of quality services across a continuum of care and across the lifespan, and to continue to support scientific research that will lead to more effective treatments, and one day, to effective strategies for prevention.”

For more information on the Combating Autism Reauthorization Act (CARA) of 2011 please visit Autism Votes.

To view the Congressional Hearing on the C-SPAN Video Library click here.

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