By Dan Olmsted
Can it be? Is it already time to wrangle over the re-re-authorization of the Combating Autism Act, the billion-dollar (give or take) boondoggle that was supposed to marshal the government's war on autism but instead has shillied and shallied and dillied and dallied? Sadly, the only thing that has redoubled is not the government effort, but the autism rate.
It is indeed CAA time. The funding expires at the end of September -- the government's fiscal year -- unless it is renewed. The way things work in Washington, where I live and which I used to cover, heavy negotiations will be going on in April and May, which is practically next month.
The glaring beacon of mediocrity that exemplifies the feds' futile efforts is, of course, the Interagency Autism Coordinating Committee, which, besides not coordinating anything, spends most of its time avoiding the fact that vaccines are driving the autism epidemic. Tom Insel, whom I've called a feckless factotum and called on to resign many moons ago, seems to be hearing voices from on high (HHS? The White House?) and keeps things merrily spinning in circles.
Don't take my word for it. The Government Accounting Office recently concluded that "84 percent of the autism research projects funded by federal agencies had the potential to be duplicative. Of the 1,206 autism research projects funding by federal agencies [mostly, let's face it, by Insel's NIH] from fiscal years 2008 through 2012, 1,018 projects [most of them!] were potentially duplicative because the projects were categorized to the same objectives in the IACC strategic plan."
In its own self-serving report to Congress, the NIH's Office of Autism Research Coordination blathered on about how, "In the time since the enactment of the CAA, CDC has built critical infrastructure to further advance understanding of ASD and has seen these efforts come to fruition."
No, the CDC has continued to front-load the childhood vaccine schedule with immune-inflaming shots that are the primary trigger of the autism epidemic; the NIH has funded stupid and studiously avoidant studies; and HHS, of which both are a part, has continued to deep-six the vaccine "court" evidence that vaccine injury is clearly linked to autism.
Heck of a job, Tommy.
Given all that, what can we really expect from a renewed CAA? Well, as I said, it's almost March 1 -- meteorological spring -- and hope springs eternal. What would you, dear reader, like to see embedded in the next few hundred million dollars of government spending on the worsening autism epidemic?
Meanwhile, we shouldn't forget what the scientists call the null option -- in this context, doing nothing, letting the whole thing expire and trying something else. As the late, great and never-wrong Bernie Rimland wrote before the first CAA was enacted:
"I strongly oppose endorsing 'The (Pretending to) Combat Autism Act' unless it includes clear and explicit language supporting meaningful research on the role of vaccines and mercury as plausible causes of the autism epidemic.
"The proposed Combating Autism legislation is as sincerely dedicated to combating autism as O.J. Simpson was to finding the 'real killers' of his ex-wife Nicole.
"The fear that failure to pass the CAA will lead to a catastrophic failure to fund future autism research vastly overestimates the value of government funded research. Most such research is only of academic interest, which gathers dust on library shelves and advances the 'publish or perish' aspirations of academic researchers. Is there any evidence whatever that more than a minuscule percent of government funded research has produced any positive and useful benefits for autistic children and their families, or ever will? If you are aware of any examples showing such research is serving a truly useful purpose, please let me know."
A good place to start towards a CAA worth having would be to revisit the principles of a group called the Combating Autism Act Reauthorization Coalition (AOA was a member), which tried its best the last time around but ran aground as Congress, in one of its frequent panics, ignored the issue till the very last moment and then shoveled the SOS through both houses. Here is our article from October 2010, a full year before the last bill was passed:
President Bush signed into law the Combating Autism Act (CAA) on December 19, 2006. This landmark legislation authorized $700 million in research funding over five years and set the goal of finding the cause (including possible environmental causes) and treatments for autism. The Act sunsets on September 30, 2011.
A coalition of leading community organizations is coordinating an effort to seek reauthorization and has prepared a list of Guiding Principles. A broad consensus on these principles is the essential first step before legislation can be crafted to implement these ten principles as policy (details on each principle follow below):
1) Recognize that our country faces a national public health emergency.
2) Direct increased resources for a lifespan of autism services through established services infrastructure at the state level.
3) Dedicate federal research to strategic research that can halt the autism epidemic in its tracks.
4) Conduct autism surveillance with the scope, timeliness and rigor appropriate to the need.
5) Focus strategic new research in areas that can yield meaningful near term results.
6) Keep individuals with autism safe from accidental death and injury.
7) Prevent harmful restraint and seclusion of autistic individuals.
8) Address critical gaps in vaccine safety research and policy governance.
9) End health insurance discrimination against individuals with autism.
10) Develop autism policy with an open, transparent approach.
We invite all organizations to mobilize and join in this vital effort. Contact information, an updated list of organizational members, and relevant documents can be found atCAACoalition.org.
The theme underlying all the Guiding Principles is that we need a legislative response driven by the seriousness of the epidemic, by the opportunity to prevent new cases and treat existing cases with the same urgency as our national response to hurricanes, floods, and pandemics, and by the necessity to provide adequate supports and services to facilitate people on the spectrum to lead full and complete lives. Accordingly, the first principle calls for the formal legislative recognition of the autism epidemic as a national health emergency without the usual hedging language from CDC that they don’t know how much of the increase is “real.”
The original Act was primarily focused on research with some additional funding for outreach and awareness education. It established the Interagency Autism Coordinating Committee (IACC) to advise the Secretary of HHS on all matters relating to autism and develop and update an annual strategic plan for autism-related research. CAA 2011 must restructure management of the research enterprise into a new National Institute for Autism Research, re-engineer the grant-making process to rapidly achieve the goals of prevention and treatment, and ensure vigorous and meaningful accountability, oversight, and broad community participation.
Research Funding Priorities Research funding must be re-prioritized and focused on the specific areas with the greatest payoff to achieve the goals of prevention and treatment. It is especially important that scarce research dollars be spent wisely in order to provide the greatest and quickest leverage. Accordingly, there must be a considerably greater focus on environmental factors, epigenetics, and on “translational” research that can quickly link bench science and clinical research to immediate medical and behavioral improvements. Money must be invested in research yielding the greatest benefit in the shortest time.
The legislative history of the original Act called specifically for research on vaccines as a potential cause of autism. However, despite repeated requests from across the community, ongoing compensation of vaccine-caused autism in Vaccine Court, recommendations and coordination from the National Vaccine Advisory Committee, and privately-funded research that continues to reveal damage done by vaccines to children and animals, IACC has refused to fund essential research such as a comprehensive comparison of vaccinated with unvaccinated children. CAA 2011 must specifically require a comprehensive program of vaccine safety research focusing on an ongoing comparison of vaccinated with unvaccinated children and animals and on the mechanisms of injury.
The CAA provided for research relating to services and supports but was not designed to actually fund them. Several bills have been introduced during recent sessions relating to demonstration projects and funding for services and supports, training, restraints and seclusion issues, wandering disorder, and infrastructure, but none of these has passed.
Especially in view of under-funding of existing mandates in Medicare and the aging of the leading edge of the epidemic through their teenage years and transitioning into adulthood, comprehensive legislation is needed to address – and fund – these complex issues. CAA 2011 must direct significantly increased resources for services through existing state-level infrastructure to the families and providers who are in the best position to meet the specific needs of individuals with autism. As with research governance, CAA 2011 must improve services governance by separating IACC into separate specialist committees that will be better able to focus on the quite distinct constituencies, specialties, and challenges faced in marshaling and coordinating the services-related resources throughout the federal government.
Because the urgency of the response and need will be aided by timely and accurate data on the scope and nature of the epidemic, CAA 2011 must significantly strengthen the gathering and reporting of information on the number of individuals with autism, the severity of their diagnoses, and their specific needs for services and interventions.
Individuals with autism face unique safety issues. Legislation must address these by guaranteeing that children in school enjoy a learning environment free from dangerous restraints and seclusion and by providing first-responder training and funding for systems to prevent wandering and ensure the safe return of children to appropriate supervision.
Legislation reforming various aspects of insurance has passed in over 20 states, and the recently passed national healthcare reform legislation addresses some aspects. However, in view of the strong popular support for “repeal and replacement,” CAA 2011 must provide for parity of coverage with other medical conditions and ban all forms of insurance discrimination arising from an autism diagnosis.
The reauthorized CAA must be the product of an open and transparent process. In the present toxic environment in Washington, its chances of passage will [require] a strong community consensus on first, guiding principles, and then the details of policy implementation developed through a close collaboration of organizations that have disparate interests and objectives. Most important, passage will require an extraordinary effort in grassroots lobbying from throughout the community. In this election, and in preparation for the reauthorization effort, take the time to visit your local Representatives and Senators and educate them as to the urgent of the community for a comprehensive and coordinated policy response to the autism epidemic.
We invite all organizations to mobilize and join in this vital effort. Contact information, an updated list of organizational members, and relevant documents are atCAACoalition.org
Age of Autism
Autism Action Network
The Autism Research Institute
The Autism Society of Connecticut
The Autism Society of Greater Phoenix
Elizabeth Birt Center for Autism Law and Advocacy
Greater Brunswick Special Families
National Autism Association
Talk About Curing Autism
The Pilota House
Dan Olmsted is Editor of Age of Autism.