A parent response to Barton's form letter

[Guest guest]

JOE BARTON DEFENDS POSITION ON CAA, PARENT RESPONDS

Recently, I sent a letter to Congressman Joe Barton pleading with

him to release the Combating Autism Act from his committee for a

vote in the House of Representatives. Having passed unanimously in

the Senate, and being endorsed by twenty national autism

associations, it reportedly is assured passage in the House, because

it's a good bill that makes a step in the right direction.

In response, I received a letter from his office. Attached is Rep.

Barton's letter and my response, along with a brief analysis of his

campaign contributors.

BARTON:

Dear Mrs. ,

Thank you for contacting me about autism research. I appreciate

hearing from you on this very important matter.

On August 3, 2006, the Senate passed S.843, the Combating Autism

Act. I agree with the great majority of provisions listed in

S.843. Increasing and intensifying autism-related activities at the

Centers for Disease Control (CDC), including autism surveillance,

education and outreach is something I enthusiastically support.

RESPONSE:

I find it interesting that you state you enthusiastically support

activities such as surveillance (let's count those autistic kids),

education (let's teach those autistic kids) and outreach (let's find

those autistic kids), but not research into what has caused the

meteoric rise in autism rates seen in the past decade. Furthermore,

the CDC will get its money through the appropriations process with

or without CAA – the key question is – how will they use it? Thus

far, their handling of the autism epidemic has been nothing short of

disastrous!

BARTON:

I would also like to include $225 million to educate doctors and

parents about the warning signs of autism.

RESPONSE:

Why do we need $225 million for this? Give me a few hours and the

email address of the American Medical Association, the American

Academy of Pediatrics, and the American Academy of Family

Physicians, and I'll do this for free. They can forward the message

and communicate electronically with their membership (I don't know a

Pediatrician who doesn't have a computer). This is just smoke and

mirrors to deceive the public into believing you are actually

addressing the problem.

BARTON:

I support the provisions which allow the CDC to award grants for the

collection, analysis, and reporting of state epidemiological data of

autism spectrum disorder.

RESPONSE:

Epidemiology is what the CDC hides behind when it doesn't like what

the clinical studies are saying. The major epidemiological issue of

true importance here is to compare vaccinated and unvaccinated

populations to look at not only autism spectrum disorders but also

at a huge range of health problems including life-threatening

allergies, ADHD, and myriad developmental delays. Just curious,

do you support the bill mandating this research? Don't worry –

that's a rhetorical question and I already know your answer.

It can't be stressed enough that there is no such thing as a genetic

epidemic. While there is likely a genetic component to autism that

makes some children more vulnerable, there is something that

triggers autism which means it can be prevented and possibly, cured.

BARTON:

I also encourage promotion of early screening of individuals.

Another important component is providing individuals and their

family information regarding such disabilities and available

evidence-based interventions.

RESPONSE:

These would be the evidence-based interventions families can't

possibly afford, and which no state agency and almost no public

schools will provide, right? Like the 40 hours per week of one-to-

one Applied Behavior Analysis (ABA) necessary to teach our children

even the simplest task, like making eye contact?

BARTON:

I support requiring the CDC to collect and analyze information on

the number, incidence, correlations and causes of autism spectrum

disorder.

RESPONSE:

Finally, we come to the word " cause " . If you truly supported

research into the causes of autism, you wouldn't be trying to heart-

cut the provisions of CAA that mandate research into all possible

causes, including environmental causes, which in turn includes

vaccines and their components.

BARTON:

Additionally, families could benefit from the creation of an

Intragency Autism Coordinating Committee at the Department of Health

and Human Services (HHS) which would coordinate all efforts with HHS

concerning autism spectrum disorder.

RESPONSE:

The IACC has been around for years, since about 2000, and you would

know that if you really cared about autism. The Senate version of

the CAA requires that one-third of the IACC be from the community

(or a total of seven). At the present time, there are only three

community members in the IACC who are not doing anything to advance

environmental research, which begs the question, who picked these

folks?

BARTON:

Included with this letter, for your review, is a brief side-by-side

explanation of the Senate-passed bill and my Chairman's draft offer

to Senator Rick Santorum of Pennsylvania, the sponsor of S.843.

There have been no House hearings on my draft offer, and it is

subject to change when Congress reconvenes in November.

RESPONSE:

Included with my letter is an enlightening look at the industries

that are your biggest supporters. Honestly, parents of children

with autism know why you are not supporting CAA.

BARTON:

At the same time, I believe the most effective way to improve

federal research is the fundamentally reform the National Institute

of Health (NIH). This will positively impact research and medical

advancement into all diseases, including autism. The House of

Representatives passed H.R. 6164, the NIH Reform Act, by a near-

unanimous majority of 414-2 on September 26, 2006. This bill has a

specific and simple principle for medical research: politics out,

money in. The bill gives the NIH director the tools he needs to

clean up the mess in national health research, where sometimes the

left hand does not know what the right hand is doing. H.R. 6164

authorizes an increase to the NIH budget of $1.4 billion to a total

of $29.7 billion next year, $31.2 billion in 2008, and $32.7 billion

in 2009. This is money that will spur medical innovation aimed at

curing autism and dozens of other disorders and diseases, which

impact the lives of millions of Americans. The NIH Reform Act, if

it passes the Senate and becomes law, will make the NIH much more

transparent and will enhance merit-based prioritization of

discretionary grants towards historically under-funded areas like

autism research.

RESPONSE:

During your recent appearance on CNN, you said you didn't think

autism should " play by different rules " than other diseases (sort of

like we are just bad children who want more than our " fair share " ).

Whether you are aware or not, autism is not just an epidemic, it's a

national emergency. The " one-size-fits-all " legislation you propose

is inadequate to meet the challenges we face. Your failure and that

of many of your colleagues in Congress to acknowledge this epidemic

long ago has heightened this emergency. Your bill does nothing to

ensure that any portion of the money will go toward autism research,

will take years to implement, requires no mandate for environmental

and vaccine research, provides no option for a national autism

advisory board, and contrary to your claim actually politicizes the

research agenda by giving a 5% fund to the specific control of the

director of NIH, a political appointee.

Years could pass before anyone even decides how much money should be

devoted to autism, as you pit us against the long-time sacred cows

of medical research currently receiving a disproportionate amount of

available funds. Autism is now more common than childhood AIDS,

cancer, and diabetes combined. This is a problem of epic

proportions, and your alternative, which amounts to doing nothing

now, does not guarantee any progress whatsoever. Each day that more

children are diagnosed with autism, the social, emotional and

economic costs explode exponentially. Unanimously, the Senate agreed

that this bill is warranted. Are your colleagues in the Senate so

misguided?

BARTON:

Again, thank you contacting me. Please continue to keep me informed

of the issues that are of importance to you.

RESPONSE:

No problem. I, and millions of Americans like me, will not go away

because you send us a form letter. I believe our compassion and

determination are greater than your political will because we love

our children fiercely. I'm afraid you underestimate us, and we will

do everything in our power as advocates to ensure your constituents

realize that you've forsaken many of our society's most vulnerable,

disabled members.

With hope for the future,

M.