Saturday, November 18, 2006

WHAT’S IN THE HORSE, or POLITICS AS USUAL

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 Michael 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 ⎯ with each other and with us as our Committee worked on this bill ⎯ 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 ⎯ A-CHAMP (Advocates for Children’s Health Affected by Mercury Poisoning), Moms Against Mercury, and No Mercury ⎯ 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 ⎯ 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 ⎯ in the view of some of us ⎯ 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. John 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 ⎯ or disprove ⎯ 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 ⎯ 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.

7 Comments:

Anonymous Robin Nemeth said...

Why does Diedre Imus continue to support this bill? Doe she support it in it's present form, stripped of it's teeth, with the language that would call for a look at the role of vaccines removed? I'm presuming that if she's made it clear that people are paying attention to what is actually said and done, that she is one of them.

11/19/06, 9:15 AM  
Anonymous Cormac said...

Wade,
Thanks for taking the time to write this. I'm not much of a writer and it allows me to explain to others, why the CAA is something many families of Autistic children are against in it's present form. And dead set against after Barton guts it.

11/19/06, 9:44 AM  
Blogger Randy said...

I'm of the opinion that the vaccine/mercury link should be thoroughly investigated and either confirmed or debunked. The problem I see is designating the entity that will conduct the research and the parameters placed on the research. Is there an entity whose research and results would settle the issue once and for all, however they came out? Also, the change in party control probably means that any and all active legislation will drag along until the Democrats figure out their priorities. So the CAA is unlikely to go very far before next session.

11/19/06, 10:45 AM  
Anonymous Mary Webster said...

Wade,

How nice to see tangible evidence you survived the relocation with full use of your faculties. Thanks for this latest dose of sense – it was worth the wait.

Mary

11/19/06, 1:18 PM  
Anonymous Shawn said...

It's good to hear from you Wade. Thanks for some background on this bill. I've followed a little bit of it, but I haven't paid much attention lately.

I'm probably in the second group you mentioned, but I'm dumb founded at the funding the bill provides. My reasons are (begin cynical rant) purely mathematical:

- The bill provides $860 million over 5 years
- The US population is roughly 300 million
- Which means we're spending $2.87 per person over 5 years or
- 57 cents per person per year or
- Based on CDC numbers, $95 per autistic individual per year

Forgive me Senators and Representatives if I don't wait around for anything constructive to come from this.
(end cynical rant)

11/19/06, 9:09 PM  
Blogger Michelle O'Neil said...

Thank you for the rundown here. It is so hard to stay up to date when you are overwhelmed by the physical responsibilities of taking care of a child on the spectrum.

Too many newsletters and I start to tune out. I don't want to, but there is only so much one can take in. I really appreciated reading this and I agree, a watered down version of the bill is detrimental to the cause.

11/21/06, 1:37 PM  
Blogger Kristina Chew said...

I have been meaning to write in here since you posted this---thanks for making sense of the (usual?) senselessness that seems to happen when autism gets mixed with politics.

12/4/06, 12:59 AM  

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