By Elise Viebeck - 05/21/14 08:46 AM EDT
Advocates for people with autism are divided over whether Congress should make major changes to a landmark federal program that is set to expire at the end of September.
The Combating Autism Act of 2006 was the first law passed by Congress that was unique to autism, and is credited by advocates with jumpstarting the national campaign — now symbolized by a puzzle piece — to treat and diagnose a condition that affects an estimated 1 in 68 children in the United States.
But an upstart group known as 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 reform coalition has found allies in Sens. Robert Menendez (D-N.J.) and Mike Enzi (R-Wyo.), who plan to introduce a competing bill in the upper chamber that would pursue a different approach, partly by dictating where research dollars should be spent.
The group said the marked increase in autism cases is an epidemic that cannot be fully explained by better diagnoses, and say it’s time that Congress took a more aggressive approach.
"[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.
"So far, the government's attempt to combat it has completely fallen short," he added. "It is not a serious effort that has failed. I would called it a fake effort, a cosmetic effort that was doomed to failure from the beginning."
Initially funded at nearly $1 billion, The Combating Autism Act launched the first national survey at the Centers for Disease Control and Prevention (CDC) to gauge the prevalence of autism, and required National Institutes of Health (NIH) to craft a strategic plan for autism research.
Last month, a wide coalition of healthcare and disability groups urged lawmakers to renew the act, arguing it has "dramatically" increased the breadth and pace of the fight against autism.
"This comprehensive strategy is accelerating our efforts to better understand this increasingly prevalent developmental disability," the Consortium for Citizens with Disabilities wrote in one letter.
But not everyone in the autism community thinks the program is working, and their doubts have been amplified by government investigations into how the program is run.
In a widely cited report, the Government Accountability Office said last year that 84 percent of autism research projects under current law have the potential to be duplicative.
The agency laid partial blame on the Interagency Autism Coordinating Committee, a panel that has been heavily criticized by the Autism Policy Reform Coalition.
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.
A spokeswoman for Menendez confirmed he is working on legislation but declined to discuss the details.
Sources close to the debate believe the APRC-inspired bill is likely to move given the imminent retirement of HELP Chairman Tom Harkin (D-Iowa), who has an eye on his legacy.
But the measure will have strong competition from the House reauthorization bill, which has the backing of GOP leaders, 50 bipartisan co-sponsors and the support of Autism Speaks.
The bill would reauthorize the Combating Autism Act with a handful of small changes to increase accountability. Reps. Chris Smith (R-N.J.) and Mike Doyle (D-N.J.), who worked with Menendez and Enzi on the law’s 2011 reauthorization, are sponsoring it.
Stuart Spielman, senior policy advisor and counsel at Autism Speaks, said the priority should be keeping the current program in place.
"There are certainly things we can do better," he said. "But it took a long time to build this edifice, this structure, and we need to build on it, not start from scratch."
An aide to Menendez said Wednesday that the senator maintains an open-door policy with all stakeholders and does not believe the Combating Autism Act should expire.
"He is working on a bipartisan bill to ensure the programs created under the CAA are extended and, where possible, improved," the aide said.
"We’ve worked hard to draft a bill that both recognizes the priorities of the broad range of stakeholders, as well reflects the political realities of what’s achievable."
— This story was last updated at 11:19 a.m.