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Autism Speaks again calls upon the federal government

NEW YORK, N.Y. (January 13, 2010) — As the Journal of the American Medical Association (JAMA) reports on the actual decline in U.S. biomedical research funding, Autism Speaks, the nation’s largest autism science and advocacy organization, again called on the federal government to immediately step up its efforts — and dramatically increase research funding — to address the growing national autism public health crisis. The American Medical Association report, U.S. Funding Biomedical Research, 2003-2008, reprinted in JAMA, January 13, 2010 finds that overall funding for biomedical research in 2008 decreased, when adjusted for inflation. Nowhere is the need for increased research funding more evident than for those individuals and families whose lives are impacted by autism.

According to the AMA, during the period of 2003-2007, nation-wide biomedical research funding across the full spectrum of healthcare needs and diseases, increased 14%, with a compounded annual growth of 3.4%. In 2007, the highest year of funding, the US spent approximately 4.5% of its health care expenditures on funding biomedical research and approximately 0.1% of the expenditures on health services research with industry providing the majority of funding (58%), and the government contributing only one-third of funding (33%).

This reduction in funding for biomedical research is of great concern in light of the staggering new statistics on the prevalence of autism spectrum disorders. Just this past December, the Centers for Disease Control published findings in Morbidity and Mortality Weekly Report (MMWR), that approximately 1 percent or 1 in every 110 children has been diagnosed with autism, including 1 in 70 boys. This represents an alarming 57% increase in prevalence from 2002 to 2006, and a 600 percent increase in just the past 20 years. Geraldine Dawson, Ph.D., Autism Speaks chief science officer, noted that recent research indicates that a significant amount of the increase in autism prevalence cannot be explained by better, broader or earlier diagnosis and that, “It is imperative that the federal government, primarily through the National Institutes of Health and CDC, quickly and significantly increase funding for autism research to explore the factors that are contributing to the increase We have learned a lot about autism during the past five years. However, most of the critical questions about the factors that cause the many manifestations of autism ? and how we can better treat this disorder ? remain unanswered.”

Autism is a major public health emergency that is taking an enormous toll on millions of families across the country who need answers that can only come through further research. Families are also desperate to access services that are, at this point, grossly inadequate to meet the current and growing needs of people with autism. According to a 2007 Harvard School of Public Health study, it costs the United States approximately $35 billion each year to care for people with autism ? a number that has clearly increased over the past two years with the rising prevalence among the youngest people with ASD and a growing demand for housing, work skills and opportunities, healthcare, and other services that simply do not exist for adults with ASD. In FY 2008, total federal spending on autism research was just $177 million, expected to increase to $282 million in FY 2009 ? only because of a one-time infusion of $89 million in stimulus spending.

Autism Speaks funds a significant amount of research made possible by the fundraising efforts of thousands of families across the country. To date, Autism Speaks has committed $131 million to research. “Because there are many kinds of autisms, as there are many kinds of cancers, we expect many environmental factors may be contributing to the increase in autism prevalence,” explained Dr. Dawson. “With a significant part of the increase attributed to unknown factors, we have cast a wide net to explore the role of environmental factors, so we have funded research on prenatal factors (maternal and paternal age), diet and nutrition, challenges to the immune system, chemicals, and toxins. There is so much work to be done.”

“During his campaign, President Obama committed to $1 billion of annual federal spending on autism by 2012. In October, he identified autism as one of his administration’s top three public health priorities. This new prevalence data must compel Congress to take action to fulfill the President’s promise in the upcoming FY 2011 budget process,” said Mark Roithmayr, President of Autism Speaks. “In addition to the funding of research, it is also vital that any healthcare reform legislation sent by Congress to the President must include ? as both the current House and Senate versions do ? an end to insurance discrimination against people with autism by requiring insurers to deliver coverage for behavioral health treatments.”

The JAMA paper states that biomedical research “serves many masters and is highly valued as a source of new and more effective treatments for common or devastating diseases,” and further that research, and the products and services it develops, are sources of economic development. The paper concludes that is likely in coming years a debate will emerge whether new technology represents a new cost or a value added. “There is no doubt that advances in autism research on causes and treatments will actually reduce the long term and growing cost to this country of supporting the growing population of individuals with autism, some 750,000 children and the not yet counted population of adults,” concluded Dr. Dawson.

About Autism

Autism is a complex neurobiological disorder that inhibits a person’s ability to communicate and develop social relationships, and is often accompanied by behavioral challenges. Autism spectrum disorders are diagnosed in one in 110 children in the United States, affecting four times as many boys as girls. The prevalence of autism increased 57 percent from 2002 to 2006. The Centers for Disease Control and Prevention have called autism a national public health crisis whose cause and cure remain unknown.

About Autism Speaks

Autism Speaks is the nation’s largest autism science and advocacy organization. Since its inception only five short years ago, Autism Speaks has made enormous strides, committing over $131 million to research and developing innovative new resources for families through 2014. The organization is dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. In addition to funding research, Autism Speaks also supports the Autism Treatment Network, Autism Genetic Resource Exchange and several other scientific and clinical programs. Notable awareness initiatives include the establishment of the annual United Nations-sanctioned World Autism Awareness Day on April 2 and an award-winning “Learn the Signs” campaign with the Ad Council which has received over $200 million in donated media. Autism Speaks’ family resources include the Autism Video Glossary, a 100 Day Kit for newly-diagnosed families, a School Community Tool Kit, a community grant program and much more. Autism Speaks has played a critical role in securing federal legislation to advance the government’s response to autism, and has successfully advocated for insurance reform to cover behavioral treatments. Each year Walk Now for Autism Speaks events are held in more than 80 cities across North America. To learn more about Autism Speaks, please visit www.autismspeaks.org.

About the Co-Founders

Autism Speaks was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Bob Wright is Senior Advisor at Lee Equity Partners and served as vice chairman, General Electric, and chief executive officer of NBC and NBC Universal for more than twenty years. He also serves on the boards of the Polo Ralph Lauren Corporation, RAND Corporation and the New York Presbyterian Hospital. Suzanne Wright has an extensive history of active involvement in community and philanthropic endeavors, mostly directed toward helping children. She serves on the boards of several non-profit organizations and is a Trustee Emeritus of Sarah Lawrence College, her alma mater. In 2008, the Wrights were named to the Time 100 list of the most influential people in the world for their commitment to global autism advocacy.




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