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Wednesday, May 28, 2014

CARA Controversy

Elise Viebeck reports at The Hill:
House lawmakers took a step toward moving a landmark autism-fighting law following a government investigation found that most federal autism research has the potential to be duplicative.
The Energy and Commerce Subcommittee on Health approved an amendment Wednesday that would require the Health and Human Services secretary to designate a deputy to oversee federal autism research and services.
The official would help coordinate anti-autism activities across federal agencies and ensure the projects "are not unnecessarily duplicative," according to the amendment.
The language comes after the Government Accountability Office found last year that 84 percent of autism research projects under current law have the potential to cover each other's ground.

Lawmakers from both parties praised the amendment and predicted it would improve existing programs.
Last week, she reported on  opposition from the Autism Policy Reform Coalition (APRC) is against the bill, arguing a drastic overhaul is needed in order for the money to be used effectively.
"[The rise in autism] is nothing short of astronomical, and I would say, cataclysmic," said Craig Snyder, a longtime autism lobbyist and chief spokesman for the APRC.

Snyder’s group is taking a hard line, arguing it would be better for lawmakers to let the autism act expire on Sept. 30 rather than continuing it in its current form.
"We believe it is better for the country to face the end of these programs and to have a serious dialogue about what went wrong than to put another seal of approval on bad policy," Snyder said.

Legislation from Menendez and Enzi is expected to include several of the reform coalition’s top priorities, Snyder said.

First, Snyder’s group wants to centralize federal autism research within a new office at the NIH modeled on the Office of AIDS Research.

The office would have its own budget and direct scientific work about autism in line with a strategic plan, shifting away from the current model of organic studies funded out of general NIH accounts.

Snyder argued that federal research on autism is overly concerned with genetics at the expense of exploring possible environmental risk factors and ways of treating patients.

Other agencies would also see big changes under the APRC plan.

The CDC, for example, would be required to revamp its autism prevalence survey and conduct it every year instead of every two years.

The Health Resources and Services Administration would be tasked with creating clinical guidelines to ensure that the appropriate clinician treats someone with severe autism during a medical emergency.

And finally, the APRC would create a new body to coordinate autism policy across federal agencies, similar to the White House Office of National Drug Control Policy.
ASAN opposes the bill:
1) H.R. 4631 continues to use language offensive to Autistic people and our allies. We don’t want to be “combated” – we want to be supported and respected. Despite numerous complaints by the Autistic community, the legislation continues to use disrespectful and offensive language. This has to change.
2) H.R. 4631 adds four congressionally appointed members to the Inter-Agency Autism Coordinating Committee, politicizing the IACC instead of letting it focus on analyzing autism research and policy from an objective perspective.
3) H.R. 4631 fails to require additional self-advocate representation on the IACC. Shouldn’t a government advisory committee about autism require more than one autistic representative on the committee? Tell Congress that they shouldn’t be acting about us, without us.