WHAT’S IN THE HORSE, or POLITICS AS USUAL

[Guest guest]

WHAT'S IN THE HORSE, or POLITICS AS USUAL

by Wade Rankin

http://tinyurl.com/ya8vd9

There was an old comedy routine called " That's good/that's bad, " in

which a comic says something that sounds like bad news. When the

straight man say's " that's bad, " and the comic then explains why it's

really good news. But then when the straight man thinks it's good

news, the comic takes a turn and it's bad again. I've been think about

that routine lately while thinking about the continuing saga of the

Combating Autism Act ( " the CAA " ). The twists and turns just won't stop

in this story. And politics has turned something that should be

uniting the greater autism community into a wedge.

Let's review how we got here. In the late night hours of August 3,

2006, when only the hardiest political junkies were watching C-Span,

the United States Senate approved S. 843, the " Combating Autism Act. "

The approval was unanimous; after all, what Senator wants to be on

record as opposing efforts to " combat " a disability affecting so many

American families? Some corners of the autism community joined with

the Senate in calling for celebration and praise. One can well imagine

similar glee being expressed by the citizens of ancient Troy as they

accepted a large wooden horse left behind by Greek invaders. And a

closer look at what went on reveals the bill to be a Trojan Horse.

In the " colloquy " (a prepared script performed by legislators prior to

voting, designed to illuminate their intentions), Senator

Enzi, Chairman of the Health, Education, Labor and Pensions (or

" HELP " ) Committee, thanked various senators and staff members who had

worked on the bill, and then turned his attention to others:

I also want to thank the various groups and individuals who work

on behalf of individuals and families affected by autism spectrum

disorder. I appreciate the way in which this community of advocates

has come together to work with me and my colleagues on this. If they

had not worked together so well & #9135; with each other and with us as our

Committee worked on this bill & #9135; I doubt we would be here today.

Indeed, various research and advocacy groups had worked hard to

encourage legislation that would address a growing crisis. After it

became clear that the bill, as originally introduced, would not

represent a change for the better, 21 organizations, with varying

agendas, came together to help craft a revised bill to address a broad

spectrum of needs for research and services. The consensus revision

was not perfect, but it represented such a positive step forward that

the 21 groups agreed to come together as one and endorse the proposal.

All indications from the Senate led to a belief that the bill would

emerge from the HELP Committee in substantially the same form as the

consensus revision, and the 21 organizations worked hard to garner

support for the bill.

Shortly before the bill emerged from the HELP Committee, it became

clear that the language the Senate would vote on did not include some

of the most important parts of the consensus revision. Three of the

endorsing organizations & #9135; A-CHAMP (Advocates for Children's Health

Affected by Mercury Poisoning), Moms Against Mercury, and No Mercury & #9135;

decided that principle allowed them to support only the consensus bill

rather than what emerged from the Committee.

The CAA directs the Director of the National Institute of Health

( " NIH " ), acting on behalf of the Secretary of Health and Human

Services, to " develop and implement a strategic plan for the conduct

and support of research related to autism spectrum disorder. "

Of course, the NIH is not known to have an open mind on the principle

issue in the autism community: do vaccines and/or any component part

such as thimerosal, play any role in the triggering of autism spectrum

disorders. The Institute of Medicine ( " IOM " ), which is part of the

NIH, examined the issue, at the behest of the Centers for Disease

Control ( " CDC " ). The IOM Committee working on the question, rushed to

a conclusion, before much of the biological evidence was ready for

consideration, and it ignored other biological evidence. Instead, the

IOM relied on flawed epidemiological studies, and concluded that there

was no proof of a causal link, and that research efforts should be

directed to other issues.

Therefore, assigning the job of investigating the hypothesized link

between vaccine components and autism spectrum disorders to the

unbridled discretion of the NIH makes little sense. And the NIH's

discretion in directing research under the Combating Autism Act will

indeed be broad.

The CAA would authorize federal spending, " subject to the availability

of appropriations, " for the NIH Director to support " centers of

excellence " for research, environmental research, and epidemiology.

With regard to the second category, the Act, if passed, will authorize

spending, again " subject to the availability of appropriations, " for

centers of excellence to " conduct basic and clinical research of a

broad array of environmental factors that may have a possible role in

autism spectrum disorder. " Note the narrow language, as opposed to the

consensus bill, endorsed by the 21 organizations, which defined the

scope of that research as being " possible environmental causes of and

risk factors for autism and the mechanisms by which they may lead to

autism, and the developmental effects of environmental agents that may

be associated with autism, including but not limited to vaccines,

other biological and pharmaceutical products, and their components

(including preservatives). "

It may sound like the idea behind such research is to look into

environmental factors such as vaccine components to determine whether

a link exists, but it seems that all environmental factors are not

created equal. Because the statutory language does not specifically

include vaccine components as being an environmental factor, we must

look to the Report by the HELP Committee and the Floor Colloquy to

determine the legislative intent. The Report sheds no light

whatsoever; it contains 8,953 words, none of which are " vaccine, "

" preservative, " " mercury, " or " thimerosal. "

The Floor Colloquy, on the other hand, manages to shed light in all

directions. Senator Enzi, speaking for the HELP Committee, was asked

to directly address the vaccine connection, but he was anything but

direct. He finished by saying that " no research avenue should be

eliminated, including biomedical research examining potential links

between vaccines, vaccine components, and autism spectrum disorder, "

and that " [n]o stone should remain unturned in trying to learn more

about this baffling disorder. " But before saying that, he noted that:

… In 2004 the Institute of Medicine's Immunization Safety Review

Committee concluded that the body of epidemiological evidence " favors

rejection of a causal relationship between the MMR vaccine and autism

spectrum disorder " and also " favors rejection of a causal relationship

between thimerosal-containing vaccines and autism spectrum disorder. "

The IOM committee also found that " potential biological mechanisms for

vaccine-induced autism spectrum disorder that have been generated to

date are theoretical only. "

…

I agree with the IOM committee's recommendation that " available

funding for autism spectrum disorder research be channeled to the most

promising areas. " The HELP Committee reported this bill without making

the determination for the autism spectrum disorder research community

of what are the " most promising areas " for investigation. Instead, the

bill reported by the HELP Committee contemplates key research

activities, including environmental research, that focus on a broad

range of potential contributing factors, with meaningful public

involvement and advice in setting the research agenda.

Even as he advocated leaving no biomedical stones unturned, Senator

Enzi stated that " there is currently no expectation that the Centers

for Disease Control and Prevention should further pursue additional

epidemiological research regarding the link between autism spectrum

disorder and vaccines or vaccine components, unless new biomedical

research provides additional information about specific at-risk

subpopulations. "

While Senator Enzi may not want to leave any stones unturned, and he

" hopes " that the NIH will direct research into the role of vaccines

and thimerosal, those wishes may not translate into specific action,

given the recorded wishes of the Senate that funding should go to the

most promising areas. In other words, the NIH is free to consider

biological research in this area a low priority because

epidemiological studies do not demonstrate a clear link, and no

further epidemiological studies, regardless of how well-designed they

may be, will be funded until further biological evidence is presented.

One way to ensure that the NIH Director acts in the public interest

rather than a separate agenda would be to add transparency to the

process. One of the provisions jettisoned from the consensus proposal

would have mandated the NIH Director to " provide for a means through

which the public can obtain information on the existing and planned

programs and activities of the National Institutes of Health with

respect to autism and through which the Director can receive comments

from the public regarding such programs and activities. " Right now,

the only means of any public input or oversight will come through the

Interagency Autism Coordinating Committee ( " IACC " ), and that does not

bode well for any meaningful participation.

The IACC, created by the Act to coordinate the Director's duties, will

include some public participation, but only one member is required to

be an autistic individual; only one member must be a parent; and only

one member is required to be a representative of a " leading research,

advocacy, and service " organization. Discarded from the consensus

proposal was a provision for an additional Autism Advisory Board,

which would have consisted of twelve professionals and eight

" individuals representing organizations from the autism community. "

That body would have provided more diversity of opinions, and would

have come closer to assuring an effective watchdog over the setting of

a research agenda. Without the Autism Advisory Board, there will be

far less transparency.

The CAA further mandates that the Secretary (again acting through the

NIH) " promote research, through grants or contracts, to determine the

evidence-based practices for interventions for individuals with autism

spectrum disorder or other developmental disabilities, develop

guidelines for those interventions, and disseminate information

related to such research and guidelines. " In other words, the

government will determine what physicians and therapists can and

cannot do, and what health insurers will pay for.

So the CAA, as passed by the Senate was no great bargain. And the

various subcommunities of the greater autism community that once

united behind it splintered. Those who opposed it still opposed it.

But those who had supported it were split into three groups: those who

still think it is the greatest piece of legislation in the history of

the republic; those who feel that even a flawed bill was better than

no bill; and those who believe that the dangers of the bill outweigh

the benefits. I happen to fall into the last group & #9135; the group that

prefers to call the statute by the name Dr. Bernard Rimland coined:

" The Pretending to Combat Autism Act. "

With that background, the CAA moved to the House of Representatives.

Enter Congressman Joe Barton. Barton, as most of you know, was the

Chairman of the House Committee on Energy and Commerce, which drew the

assignment of considering the CAA. The only thing was that there would

be no consideration at all. Joe Barton pulled a power play and decided

there would be no hearings scheduled unless the Senate passed a pet

bill of his called " The National Institutes of Health Reform Act of 2006. "

There are two ironies to Mr. Barton's stance. One irony is that the

bill he wants to push through is not a reform measure at all. In the

name of efficiency and transparency, the NIH would be freed from any

legislative oversight. It smacks of what I like to call " Offitism, "

which can be defined as a philosophy holding that scientific matters

of public interest are best determined without public input because

most of the public (i.e., us) are just too damned stupid to understand

that sacrifices need to be made.

The second irony is that & #9135; in the view of some of us & #9135; Rep. Barton

did

us a favor by delaying the steamroller that the CAA had become. It's

not that he wanted to help anybody in the autism community; Barton's

antipathy toward at least some parents of autistic children has

already been documented elsewhere. And yet he did us a favor by giving

us another chance to look within the big wooden horse.

Of course, the recent elections have changed everything in Congress.

The latest word is that Rep. Dingell will take Barton's place as

the Chair of the Committee. Does that necessarily mean anything? Well,

maybe and maybe not. Mr. Dingell has a good reputation for being

open-minded on issues such as this. On the other hand, Democrats in

general have a blind fondness for the vaccination program. Much will

depend on whether the new " ins " become convinced that a lot of people

care about finding the truth.

And don't count Joe Barton out of the picture just yet. He is still

the committee chairman during this lame-duck period, and he doesn't

want to come off as being quite so lame. He has been involved in

negotiations to get the bill passed on his watch, perhaps in an

attempt to defuse criticism that might damage his bid for the minority

leadership of the House. Considering what already happened to the bill

in the Senate, I shudder to think what might result from further

negotiations.

I also shudder that some voices in the autism community are so anxious

to get any autism bill NOW, that they are willing to settle for just

that: ANY autism bill. We've waited years to get to the point where

politicians are willing to make autism their issue. Can't we wait a

little longer to make sure we get something that will help prove & #9135; or

disprove & #9135; the hypothesis that vaccines may contribute to triggering

autism, instead of settling for a mechanism designed to bury the issue?

Most members of Congress will not examine the issue enough to truly

understand the potential for good or ill unless they are given more

time. But many activists and politicians are determined to throw more

coal into the boiler of a runaway locomotive. They're all anxious to

stand behind the president as the CAA is signed into law so they can

get into the picture. Some in our community seem to think that

supporting this " compromise " will help them get a " seat at the table. "

I hope that works, and I hope they're not relegated to the children's

table off in the corner of the room. I hope they get a real seat

because we're going to need all the eyes and ears we can get.

If the CAA passes in its present form (or, heaven forbid, an even more

watered down version), the only hope we'll have of seeing a push for

an honest look at the issue will be constantly reminding the

politicians and bureaucrats that we're out here keeping an eye on them

& #9135; that we're everywhere, and we're not going away any time soon.

One of the staunchest supporters of the CAA, Diedre Imus, served such

a notice on Senator Santorum, who appeared on Don Imus' show to pat

himself on the back after the CAA passed the Senate. Despite her

continued support for the bill, Ms. Imus made it quite clear to

Senator Santorum that people actually paid attention to what was said

and done, and that many of us are not happy about the hypocrisy that

was shown.

It will take a lot of watching to add any semblance of transparency to

the processes that will arise from the CAA. There is no congressional

mandate to take an honest look at the vaccine issues, and the

opportunity for real public input and oversight was written out of the

bill. That input and oversight must come up from the people. After the

CAA passed the Senate, A-CHAMP announced the formation of " CAA Watch, "

which will attempt to do just that: keep a watch on the

government-sponsored activities spawned by the CAA. That gives us a

little hope, but wouldn't it be better not to have to rely on that

hope? Wouldn't it be better to just get the bill right in the first

place? There's still a window of opportunity.

posted by Wade Rankin at 9:06 PM