A congressional briefing arranged by Congressmen Chris Smith (NJ-04) and Mike Doyle (PA-14), the Co-Chairmen of the Congressional Coalition on Autism Research and Education (C.A.R.E.), laid out new, sobering figures for the costs of autism on the U.S. and international health care systems Wednesday afternoon. Dr. Andy Shih, Ph.D., Vice-President of Scientific Affairs for Autism Speaks, the advocacy group that funded the research, discussed the national and per capita costs of autism.
“The costs of autism are staggering,” said Smith, author of Combating Autism Reauthorization Act, Public Law 112-32, signed into law in September 2011. “Of course, the costs in terms of the quality of life of children and adults with autism is staggering, as well. It makes the necessity of seeking prevention, effective treatments and even someday a cure more critical than ever.”
Autism Speaks announced the new research estimates autism costs society a staggering $126 billion per year in the U.S. – a number that has more than tripled since 2006. The costs of providing care for each person with autism affected by intellectual disability through his or her lifespan are $2.3 million in the U.S. The lifetime costs of caring for individuals who are not impacted by intellectual disability are $1.4 million in the U.S. The research, conducted by researchers Dr. Martin Knapp, Ph.D., of the London School of Economics, and Dr. David Mandell, Sc.D., of the University of Pennsylvania, was presented at the international conference “Investing in our Future: The Economic Costs of Autism,” on March 31 in Hong Kong. Click here for information about the cost study. Click here to the read the Autism Speaks announcement.
In addition, the Centers for Disease Control and Prevention’s Drs. Marshalyn Yeargin-Allsopp, M.D. and Jon Baio participated in the briefing, discussing the characteristics of those affected by autism and on-going research to unravel the complex risk factors for autism.
In follow-up to the news released last month by the CDC on the alarming data showing that 1 in every 88 American children and 1 in every 49 New Jersey children has a form of autism, affecting 5 times more boys than girls, the CDC researchers revealed that autism affects 1 in 83 non-Hispanic whites, 1 in 98 non-Hispanic blacks, and 1 in 126 Hispanics. Knowing racial discrepancies are important because the data may lead to clues about the causes of autism, and may help in the delivery of support services.
CDC also discussed the Study to Explore Early Development (SEED) – a multi-year, multi-site study in six diverse areas that looks at possible causes of and risks for autism and other developmental delays.
“We as a nation must strive to determine what causes autism and find better ways to ensure early diagnosis, so that interventional care can begin as early as possible,” said Smith, who also authored the provision in Title I of the Children’s Health Act (PL 106-310) which created the Centers of Excellence in Autism and Pervasive Developmental Disabilities Epidemiology that carried out this study. “We need research, new treatments and a path to a cure.”
Smith’s landmark legislation enacted in 2000—the Autism Statistics, Surveillance, Research and Epidemiology Act (Title I, P.L. 106-310) created the first comprehensive federal program to combat autism. In 2011, another piece of legislation he authored The Combating Autism Reauthorization Act (CARA)”— (now Public Law 112-32) was enacted and will provide $693 million over the next three years to continue the program.
In March, Dr. Thomas Frieden, Director of the CDC, personally briefed Smith about the new CDC data. The information was set to be released at a CDC briefing for Congress Thursday afternoon. Click here to read the study. The CDC study, entitled Prevalence of Autism Spectrum Disorders – Autism and Developmental Disabilities Monitoring Network, provides autism prevalence estimates from 14 states, including New Jersey. It was published today in the Morbidity and Mortality Weekly Report.
Smith’s law, CARA, signed September 30, 2011 authorized for each of the next three fiscal years: $22 million for the Developmental Disabilities Surveillance and Research Program; $48 million for Autism Education, Early Detection, and Intervention, and; $161 million for hundreds of Research Grants at the National Institutes of Health (NIH), and for the Interagency Autism Coordinating Committee.
In May 2011, Smith chaired a hearing on U.S. and global autism. He also has written two other bills in the current 112th Congress, H.R. 2006, “The National Autism Spectrum Disorders Initiative Act,” and H.R. 2007, “The Autism Spectrum Disorders Services Act .” H.R. 2006 designates the Secretary of U.S. Health and Human Services Department as head of the national autism effort, and authorizes the Secretary to approve a strategic plan developed by the Interagency Autism Coordinating Committee (IACC), in consultation with the National Institute for Health. H.R. 2007 broadens the existing IACC by expanding public representation and by making services to individuals with autism a major focus. H.R 2007 establishes a planning and demonstration grant program for services to children, transitioning youth, adults, and individuals of any age who may be at risk of injury, authorizes grants for protection and advocacy systems, and creates a national training initiative to better equip teachers and autism services providers.