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Tuesday, September 8, 2015

Research Priorities and Screening

In The Politics of Autism, I discuss screening and medical research.
In fiscal 2013, NIH spent $186 million on autism research. That figure exceeded funding for cerebral palsy ($18 million), cystic fibrosis ($78 million), and Down Syndrome ($18 million).[i] The disparity has caused some resentment. “Why is Down’s syndrome funding low? Autism I think is a big contributor,” Jon Colman, the chief operating officer of the National Down Syndrome Society told Nature in 2007. “It’s dominating priorities.”[ii] Nevertheless, one should not make too much of the notion that autism is crowding out other categories. Autism research accounts for only about .06% of NIH’s annual outlays of $30 billion.

[i] National Institutes of Health, “Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC),” March 7, 2014. Online:[ii] Wadman, “Autism Speaks, the United States Pays Up.”

 At The New York Times, Dr. Aaron E. Carroll writes that the United States Preventive Services Task Force has cautioned against universal screening because of the shortage of evidence.  He disagrees.
In 2014, the National Institutes of Health spent $188 million on autism research. This was a fraction of the more than $30 billion spent by the N.I.H. that year. The N.I.H. doesn’t even have a “Fact Sheet” describing its research programs specifically directed toward autism. I searched theN.I.H. RePORT site for any grants given for autism from the Agency for Healthcare Research and Quality in the last five years and found two; I’m a co-investigator on the first.
Further, if you drill down into the autism spending, a lot of it (if not most of it) is directed toward basic science research. It’s looking at what might cause autism, how we could better predict who might develop autism, and what the mechanisms are in the brain that lead to autism. All of that is important work. But very little of the funding is directed toward studying how behavioral and developmental interventions affect children, let alone focusing specifically on those who “screen positive.” No study is coming soon.
The cost of caring for and supporting a person with autism spectrum disorder without an intellectual disability over a lifetime in the United States is $1.4 million. Adding an intellectual disability raises the price to $2.4 million. These are costs above and beyond that of raising a child in general, including special education in childhood and medical care, residential accommodation and productivity losses in adulthood. This means that autism costs the American economy about $175 billion a year.That’s more than the cost of cancer, strokes and heart disease combined.
The task force is trying to demand a high level of evidence before recommending a screening test be performed universally. But without the stamp of approval from the group, payment for screening is not mandated by the Affordable Care Act. And no studies satisfying the requirements of the task force are likely to be done soon. This means that less screening will be done, even though we know three things: Autism is prevalent, screening works, and early intervention seems to make a difference in those found to have the condition.