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Weekly Wrap: Here Comes the Combating Autism Act (Again)

AofA Red Logo Ayumi YamadaBy 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
Autism One
The Autism Research Institute
The Autism Society of Connecticut
The Autism Society of Greater Phoenix
Elizabeth Birt Center for Autism Law and Advocacy
FoggyRock
Generation Rescue
Greater Brunswick Special Families
National Autism Association
SafeMinds
Talk About Curing Autism
The Pilota House

Thank you.
--
Dan Olmsted is Editor of Age of Autism.

Comments

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I think people like Insel are strategically placed in key positions like the IACC to stall. He is doing his job for someone and it's not the parents. I'm also wary of Ring and the science team at Autism Speaks and their intense focus on genetics. They are there to steer the research into one direction (genetics) despite what the parents want. There is a bigger agenda at work here.

sound busy, make no waves, and do nothing

In politics and medicine, that is the definition of a committee.

I feel like the whole purpose of IACC has been to sound busy, make no waves, and do nothing. I think they achieved their goal.

Their aim was never to STOP THE EPIDEMIC, even though Insel himself has acknowledged that the increase is real and it's going to cost us big time when we have to
support all these disabled adults.

He doesn't do on national TV, instead, he mentions it in speeches at MIT and at NIH. It sounds like he's setting himself up to be the guy in charge when autism threatens to bankrupt the economy of the U.S. He'll be able to say, "Yes, I told you this was going to be a problem."

IACC hasn't prevented a single case of autism. They can't tell us about anything significant that any study has found out about autism. The only change that's happened during Insel's tenure has been that autism went from one in 166 children to one in every 50 children.

During all this time, Thomas Insel has stood on the sidelines scratching his head over the mystery of autism.

Anne Dachel, Media editor: Age of Autism

Roger Kulp - Thank you so much for the links on umbilical cord clamping you provided below! The NY Times and Daily Mail journalists Catherine Saint Louis and John Naish are to be highly commended for their excellent discussions of the obstetric protocol for clamping the umbilical cord immediately after birth.

Ms. Saint Louis pointed out that risk of jaundice is cited as a reason for clamping the cord immediately. Jaundice is the result of high bilirubin levels in the neonatal period, and this was never viewed as harmful until clamping the cord became more and more frequent during the early 20th century. A brief period of asphyxia is very likely if placental circulation is cut off before the baby begins to breathe. The most immediate result of asphyxia is break-down of the blood brain barrier, which then allows bilirubin to get into neurons.

Hep-B vaccine components injected immediately after birth are as likely as bilirubin to cross the blood-brain barrier. I tried to point this out at the IACC meeting held in November 2008. See slide 7 of my presentation at
http://iacc.hhs.gov/events/2008/slides_eileen_simon_112108.pdf

I first attended an IACC meeting in November 2003. It followed a 2-day “Autism Summit” conference. I was required to submit in advance a 5-minute presentation in writing and on a floppy disk. Public comments were last on the schedule, and because invited speakers went way over their time limits, I ended up with at most a minute and a half, which under Meetings & Events on the IACC website, is summarized as follows:

“Ms. Ilene Simon asked the committee to consider the possibility that clamping of the umbilical cord immediately at birth might be an environmental contributor to autism. She noted that the widespread adoption of this practice seems to correlate with the apparent increase in prevalence. She noted that research on oxygen insufficiency in newborn monkeys might be relevant, as the sites of brain abnormalities resulting from the asphyxia is similar to those that have been talked about in connection with autism. She distributed a summary paper of her ideas to the committee members.”

A year earlier I had presented this idea as a poster at IMFAR, with Dr. George Morley. I plan to attend the IACC meeting in April, with a powerpoint on the same theme, which I had planned to present in January.

I could be totally wrong, but like other stakeholders, believe I have something that merits discussion. Brain impairments underlying developmental language disorder should have been recognized and understood by child neurologists decades ago. Clamping the umbilical cord at birth has no health benefit, and will cause asphyxia if the baby has not begun breathing.

At IMFAR, Dr. Morley said, “These people love autism. It’s their bread and butter!” How many children might have been spared the disaster of autism if public concerns could have been discussed a decade or more ago.

Yes, Dan, everyone, I agree, the CAA is in need of a radical overhaul, and this would be the time to do it. But how are we going to persuade Congress to do that? If every powerful vested interest wants to preserve the status quo, if even the House Oversight Committee refuses us a hearing, then how can we possibly effect any change? What is to be done?

This is what happens when companies and docs are free from the worry of being sued when it comes to vaccines.

It has worked so well for the medical establisment that -- it is in the works to get rid of all those other medical junk law suits as well.

We are paying these guys right?
They do work for us??? Right?

I don't think they really do.

Cia, I agree, my son was born 2000 ,as well. At this time I have two parents dealing with unusual mri's , both have young adult sons, both children are in college. Both have hyperintense areas of white spots. Neither is diagnosed, after checking the boxes for MS and more. One doctor suggested these spots , which are considered areas of damage, could have occurred early in life and are just incidental findings at this time. Both mothers reflect on MMR history, to a time when the children were suffering from fuo's for several months following those live vaccines. No answers, one has capd and has lost vision in one eye, the other crohn's and a brother who is low functioning on the spectrum. No one has an answer for these moms.One mom is looking into ADEM following vaccines, again, one mom against the lies will be eaten alive if she approaches the medical community. Both would like answers.

The infrastructure that Tom built needs to be abandoned and defunded. Assigning members of the CAA Coalition to a community board of directors which would entirely replace all past members ought to do it. Those who had any part in the deliberate squandering of hundreds of millions of dollars thus far while fraudulently claiming a public benefit, should be tried for their crimes and made to pay back in dollars, cents and prison time whatever they took. All those laboratories that public money built under the pretense of solving the puzzle of autism should be dismantled and the parts auctioned off and the proceeds should go directly back into a fund for real research and aid.

One additional option... it might nearly be time to raise the "75 cents per vaccine / damage tax" that has not changed since 1986. It is so nice when insurance rates stay the same for nearly 30 years.
The vaccine industry has done nearly three trillion dollars worth of damage to American children.

On a $50 vaccine, this amounts to maximum insurance liability of 1.5%.

Insurance costs are much higher than that for someone who trims fingernails in a salon.

BarbaraJ,
You are right, but there are two reasons why their talking point is dishonest. First, you are right, my daughter, born May 5, 2000, got mercury-containing hep-B. I don't know if the four DTaPs she got by November 2001 had mercury or not, nor if the three Hibs did. She had symptoms of mercury toxicity from birth, however, and I think the mercury in the one hep-B she got would have been sufficient to cause her autism (a year after the congressional hearing said that it should never be given with mercury). The multidose vials of injectable flu vaccine, since 2004 to be given yearly to every child over 6 months old, have the full component of mercury they ever did, and the trace amounts in other vaccines are still ten times over the hazardous waste limit for mercury, and, again, they add up in the many with the genetic tendency to store it in the brain rather than excrete it in a few weeks or months (and in the interim it causes a lot of damage in everyone, even if they eventually excrete it).
And then vaccine encephalitis can be caused by ANY vaccine, and it preferentially targets the speech and social center of the brain, and the brain damage can result in autism just as the mercury poisoning can. So even vaccines which have never had, or no longer have, any mercury, still provoke a powerful inflammatory immune response that can mean brain inflammation and autism. The symptoms of encephalitis can be the prolonged, inconsolable screaming for three hours or more, or just excessive somnolence or blank staring episodes. And of course there has been no study of hundreds of thousands of children to determing how many newborns sleep so much as to qualify as excessive, or how many stare blankly.

If we could just remove the lie. Autism has skyrocketed since removal or lessening of thimerosal.

1 in 88 ..released in 2012 proves this

THE studied CHILDREN were born in 2000!!! They had full doses of thimerosal.. They are fourteen years old , those one in eighty eight. Along comes the next report 1 in 50, let's shake in our boots, however, these are school children ranging in age from 6 to 17, grouped to keep the truth out of the equation. How could we possibly know what the rate of autism is in children aged ten or less,yet this is the lie. All of these current reports say, autism has skyrocketed since the removal of thimerosal, yet there is no available data to even suggest this. Autism did skyrocket parallel to the addition of more and more thimerosal laden vaccines, these vaccines didn't leave the shelves until 2003, there was no recall, no quick removal, that drop off would have looked like a cliff and they did not want that. Now, they avoid studying birth year 2004 and later. They give these uneducated reporters and journalists this information, "studies released in 2012 prove autism has skyrocked since the removal of thimerosal" ..without telling the fact that these kids had FULL doses and were born before thimerosal was reduced..

"What would you, dear reader, like to see embedded in the next few hundred million dollars of government spending on the worsening autism epidemic?"

I think the FIRST PRIORITY of any "reauthorization of the CAA" should be to revisit the wise advice of Dr. Bernard Rimland and

"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."

All else is secondary to first identifying the underlying "CAUSE" of autism .. so we can begin to bring this catastrophe to an end.

And .. so .. it is imperative .. above all else .. to provide the means and resources necessary to conduct a scientific, INDEPENDENT study of "vaccinated v. unvaccinate" populations .. to ascertain .. once and for all .. if BOTH populations suffer the same "1 in 6" children suffering child development disorders .. including autism.

This study could be easily accomplished as all other studies are .. "retroactively" .. compiling vaccination data of each chronic childhood disorder .. such as .. juvenile type 1 diabetes by age 5 .. to ascertain if those VACCINATED have more incidence of developing Juvenile Type 1 diabetes than those who were NOT VACCINATED.

How hard would that be .. if Thomas Insel had absolutely NOTHING to do or say about it?

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