Statement from the Working Group of the Combating Autism Act Reauthorization Coalition (CAARC) on the Three Year Extension of the Combating Autism Act; As Autism Epidemic Rages On, CAARC Calls for Government Accountability Office (GAO) Investigation of Autism Spending
On Friday September 30, 2011, President Obama signed the Combating Autism Reauthorization Act of 2011 (CARA 2011) into law. The passage of CARA 2011 maintains valuable momentum, but the developments of the last week are not a time for celebration for the autism community. Five years after Congress first passed the Combating Autism Act of 2006, autism families have yet to see meaningful benefits in terms of prevention, treatment and scientific understanding despite hundreds of millions in spending. Meanwhile, as the autism epidemic rages on, federal bureaucrats evade responsibility, delay critical activities, continue to invest in an obsolete scientific orthodoxy and have even begun promoting the acceptance of autism as a “new normal.”
The lengthy process (CAARC was formed in June 2010) that produced CARA 2011 has led to an outcome that is consistent in many ways with CAARC’s long held and principled positions on autism legislation.
- Despite the opposition of some advocacy groups to the very notion of “combating autism” the focus of CARA 2011 remains on research into the causes and underlying biology of autism.
- Unlike the overly broad early proposals, current drafts of bills designed to improve on CARA 2011 and CAA 2006 now separate research from services.
- Extending CARA 2011 now retains the strategic planning discipline and accountability set in place by CAA 2006.
- Importantly, CARA 2011 is a three year extension rather than a full five year renewal, recognition of the need to fix what’s broken in the original bill.
The signing of CARA 2011 is an occasion to reinforce the urgent need to combat autism, a relatively new, epidemic disorder that disables children for life, devastates families and is on track to cost America trillions of dollars. In the congressional debates of recent weeks, some Republican senators have called into question the advisability of disease specific legislation. Indeed, as one Senator told us in 2006, “there are thousands of worthy groups in here every day.” He has a good point making single disease bills only rarely a good idea and single disease bills should be the exception rather than the rule.
Autism is an important exception. No other disease has increased a hundred fold in a few decades; no other disease disables one percent of American children, leaving them dependent on caregivers for a lifetime; and no other disease has so perplexed and revealed the shortfalls in the conventional process of medical problem solving. At the same time, even though autism is a deserving exception to the bias against disease-specific legislation, exceptions like autism need to be managed closely. CAA 2006 had a five year sunset provision for a reason. Any time Congress sets aside taxpayer funds to target a single disease, it’s appropriate to pause at frequent intervals to evaluate the rate of progress against initial goals.
Five years in, the clear conclusion is that CAA 2006 has not made sufficient progress against its goal. The current leaders at NIH continue to place priority on an obsolete set of autism research priorities. The CDC continues to drag its feet on autism surveillance and only begrudgingly acknowledges that there really is a problem. These failures stand in stark contrast to the logic that motivated CAA 2006 in the first place
So as we mark the passage of CARA 2011, its time to ask the tough questions about waste, illogic and delay at the Department of Health and Human Services (DHHS). Questions like this:
- Why is NIH spending money on genetic autism research at a 6:1 ratio over the environmental causation research? This spending patterns flies in the face of all logic in light of the epidemic rise of autism. There are no genetic epidemics.
- Why does CDC’s most recent autism surveillance cover children born in 1998, well over a decade behind, and only begin surveillance in a population born in 1992? This lackadaisical pace of surveillance combined with the narrow time period of inquiry appears almost consciously designed not to shed light on the problem. The CDC’s feeble and illogical response to the autism epidemic lies at the root of the problem and has helped perpetuate what has clearly become a national emergency.
- Why does NIMH director Thomas Insel continue to lead the strategic planning for autism research when he has so strongly resisted any personal accountability for poor performance? Insel’s failed leadership lies at the root of the problem of CAA 2006; any new research expenditures require oversight from a more courageous and capable scientific leader.
In the debates leading up to the passage of CARA 2011, Senator Coburn (R, OK), a leading opponent of disease-specific legislation, asked the Secretary of the DHHS to “identify and consolidate duplicative and overlapping autism programs and initiatives throughout the Federal Government.” CAARC asks Congress to do even more than Senator Coburn proposed. We ask that Congress authorize an investigation by the GAO into the rate of return of taxpayer investments in autism research and to detail the reasons why, to date at least, the return on that investment has been so poor.
CAARC asks that the GAO investigation provide answers to the following questions
- Why would we invest hundreds of millions of taxpayer dollars to “combat autism” if there were no autism epidemic?
- Why would we invest hundreds of millions into genetic autism research when no autism genes of major effect have been found and a recent and comprehensive twin study demonstrated that well over 60% of autism causation is attributable to environmental causes?
- Why is so little research dedicated to environmental causation in autism when only new environmental exposures can explain the epidemic rise of autism and only the removal of said new exposures can prevent new cases?
- How can DHHS agencies effectively govern research into new environmental exposures like childhood vaccines when Insel himself has acknowledged that DHHS has a conflict of interest in investigating such exposures?
- What changes in research and surveillance will be required to make expenditures authorized under the Combating Autism Act an effective use of taxpayer dollars?
The CAARC Working Group urges all of its member organizations and supporting activists to join them in reaching out to Congress to authorize this investigation. It’s time to fix what’s broken at DHHS and stop the autism epidemic in its tracks.
The Combating Autism Act Reauthorization Coalition (CAARC) is made up of approximately 70 autism organizations in 40 states. CAARC members represent tens of thousands of families and uses the collective voice and power of those organizations to pass legislation that serves the interests of those with autism. You can learn more about CAARC and its Guiding Principles here: http://caacoalition.org/indeTime x.php . CAARC invites autism groups large and small across the nation to join us in advocating for those with autism by signing on to our Guiding Principles. Together, we are stronger.