The problem with the IACC is…

27 Apr

…that Tom Insel is too nice.

OK, that is as oversimplification, but bear with me. Dr. Insel is the director of the NIMH (National Institutes of Mental Health) and the chair of the IACC (Interagency Autism Coordinating Committee). As chair, he gets to run the meetings. Lucky him!

I say that with tongue planted firmly in cheek. Dr. Insel has a tough job trying to manage the IACC.

Let’s back up a little bit. The IACC committee meets regularly to work on producing a plan for the government’s research effort in autism. The idea is simple–gather together a lot of people who can bring their expertise to the table and work together to build a good plan.

Unfortunately, Lyn Redwood apparently didn’t get that memo. Ms. Redwood represents her organization (Safe Minds) as well as the views of a number of other autism organizations who promote the idea that vaccines caused an epidemic of autism.

Lyn Redwood spends each meeting as though it is held for everyone to listen to her talk about vaccines. I know that sounds like an exaggeration–it isn’t. Here is a quote from another member of the IACC committee from a recent meeting, speaking about an effort by Lyn Redwood to insert a large amount of new language into the Strategic Plan.

I’m just a little perplexed as to why we are actually looking at this. Because we worked so hard over many months as a committee and..you know..and as one person in the field who is constantly seeing more and more children with autism this sense of urgency seems to sabotaged by this constant barrage of another opportunity for one person of this committee to constantly try to rewrite the Plan. It doesn’t seem to be the correct process.

Dr. Insel then commented “There are heads shaking here.” “Heads Shaking” is what Dr. Insel says when people are nodding in agreement during a meeting. In other words–a large portion of the IACC agreed with the idea that Lyn Redwood was hijacking the process again!

The problem is, to say it again, Tom Insel is too nice. He gives Lyn Redwood a LOT of leeway to talk about…well, whatever she wants to talk about. Unfortunately, she spends a lot of time talking vaccines. Lots of time. The IACC doesn’t have lot’s of time to spend on any one subject. Especially a subject like vaccines that the rest of the committee clearly isn’t interested in discussing. To make matters worse, many of the discussions are nearly meaningless. “Should we phrase this noncommittal statement this way or that way?”

Another person draining a lot of valuable time from the IACC is Mark Blaxill. Mr. Blaxill is not on the main IACC committee. He is in one of the working groups (think advisory group to the main committee). While, luckily, he doesn’t get to vote in the main committee, in his own way he is worse than Ms. Redwood. He makes long speeches, filled with insults to the other committee members, calling those who don’t agree with him “Epidemic Denialists”.

It strikes this listener that Ms. Redwood and Mr. Blaxill are trying desperately to engage the other IACC people in a debate on the autism vaccine question. Ms. Redwood has offered to bring in papers supporting her position. Thankfully, Dr. Insel avoided that mess. I can easily imagine many of the researchers on the IACC thinking, “Gad! I already wasted part of my life on that junk science when I read it the first time. Can’t we just get something accomplished for people with autism here?” I mean, seriously, does Ms. Redwood think that people haven’t read the papers she leans on? The implications sounds like, “You don’t agree with me. That means you haven’t read these studies.” What she doesn’t understand is that pretty much everyone has read the studies she uses as support for the “mercury and vaccines caused an autism epimic” idea. Everyone has read them, and most who have read them find them to be really bad science. The academics could use them as examples of bad science for their students. Those studies are that bad.

Here’s some much needed background. The IACC committee is made up of a number of professionals and stakeholders. People fly in from all over the US to attend meetings–most of which are only a day long. The agendas are packed; there isn’t much time to waste.

Rather than accept that IACC meeting time is limited and precious, with many topics to cover, both Ms. Redwood and Mr. Blaxill act as though they are in one of Senator Dan Burton’s hearings, where the goal was to get as much of the idea that vaccines cause autism into the public record as possible–whether the science was good or not.

So, what’s happening while Ms. Redwood or Mr. Blaxill are talking? This is where the “Tom Insel is too nice” bit comes into play. Dr. Insel, chair of the IACC, allows them all the time they want to take (and they want a lot of time) to talk about vaccines. I don’t know how much of it is Dr. Insel being polite or how much is an effort to stave off future complaints that the vaccine lobby was excluded from the process. There are likely multiple reasons. Net result–lots of time taken up talking about vaccines.

Well, that’s not really accurate. There is a lot of time lecturing about the supposed vaccine/autism link. You see, there is almost no discussion amongst the commitee. Just the one-sided presentations by Lyn Redwood and Mark Blaxill. The rest of the IACC members often (almost always) remain silent. My guess is that they are just too smart to get dragged into the discussions. Yes, too smart. What purpose would it serve?

From what I can see, the rest of the IACC “gets it”. They “get it” in the fact that they already understand the vaccine debate. I don’t see the point in taking up committee and working group time with Lyn Redwood or Mark Blaxill pretending to be trying to educate the other members. The rest of the IACC also “gets it” in the fact that they understand to avoid getting sucked into the debate. Mark Blaxill would likely enjoy some blog fodder. The likes of David Kirby and Robert Kennedy Jr. would love to take everything out of context and misinterpret it for their own blog readers. All this would come at the cost of people with autism.

Dr. Insel could, I guess, limit the time that Ms. Redwood and Mr. Blaxill use. To be honest, he does manage their time somewhat, but much more would help keep the meetings productive. Dr. Insel is in a hard spot–even a reasonable level of limiting the discussion would obviously be used to fuel complaints that the vaccine debate is being quashed or the process is corrupt.

So, in the end, Dr. Insel plays the nice guy. What else can he do? Lyn Redwood and Mark Blaxill take advantage of it and, in the end, it is people with autism who pay the price when the IACC meetings are hijacked and the sense of urgency is lost as one person tries to rewrite the strategic plan.

About these ads

8 Responses to “The problem with the IACC is…”

  1. Kev April 27, 2009 at 23:16 #

    Can’t we all just get along?

    Well, no. Not always. The more we ‘listen to everyone’ is the more we gave fake legitimacy where it doesn’t belong. I believe deep down Dr Insel knows that very well. Time to cut out the dead wood Dr Insel.

  2. dedj April 27, 2009 at 23:26 #

    Without a doubt, there are many people in the background of the IACC who could perform analysis of the length and style of contribution by all the members, quite possibly right down to within an error of a few seconds.

    Unfortunetly, if it were to be shown that Blaxwood et al were allowed disproportionately larger ammounts of time, and also engaged in a didactic, lecturing, way, then this will be seen by the anti-vaxx0rz as evidence that “This issue is being discussed at the highest levels!” and that “We have to present the evidence!”.

    The assumption that the IACC aren’t already aware of the anti-vaccine evidence (which, let’s face it, amounts to less than a weekends worth of reading for an experienced academic or clinician) is horrendously insulting if false, and an indication of how sorry the evidence actually is if true.

  3. Ken Reibel April 28, 2009 at 00:11 #

    “(Blaxill) makes long speeches, filled with insults to the other committee members, calling those who don’t agree with him “Epidemic Denialists”.

    Mark Blaxill is a DSM Denialist.

  4. Prometheus April 28, 2009 at 00:28 #

    “The academics could use them as examples of bad science for their students. Those studies are that bad.”

    Some of us already have.

    Good description of how a few clueless individuals have tried to hijack the IACC procedings. Hopefully, future working groups and committees will learn from the experience of Dr. Insel and the IACC – Next time, don’t invite the “biomed” loons!

    It’s also painfully clear that Redwood and Blaxill don’t “get it” that their “studies” aren’t any good. To paraphrase Dean Yeager (Ghost Busters) their “science” is the worst kind of popular tripe, their methods are sloppy and their conclusions are highly questionable. Everybody on the IACC knows about their “studies” – and all of them understand them far better more than Redwood and Blaxill ever could.

    The Arrogance of Ignorance writ large, again.

    Prometheus

    • Sullivan April 28, 2009 at 18:21 #

      Some of us already have.

      Heh!

      I can easily see it. Some of those papers are truly junk science.

  5. Roger April 28, 2009 at 23:38 #

    See,these people are good for something,even if it’s providing a textbook example of how lies,fraud, and junk science can hijack both serious research,and public debate.

  6. Mike Frandsen April 10, 2010 at 06:22 #

    I’ve attended several of these meetings and they tend to discuss too much about a Strategic Plan that policy wonks find useful, but doesn’t result in real treatments and therapies. We should listen to the parents whose children have recovered – what worked and why? Her son has recovered due to chelation therapy after mercury poisoning.

    • Sullivan April 10, 2010 at 16:18 #

      Mike Frandsen,

      the NIH has a clinical trial studying “recovered” kids. They are still recruiting after being open for a few years. You can read about that study here, but not on the blogs and websites of groups asking for research into recovered kids. Why is that?

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 1,150 other followers

%d bloggers like this: