It’s not over yet in California: Rallies this week to get the legislature to reinstate disability services funding.

31 Aug

Below is an email from Greg deGiere The Arc & United Cerebral Palsy California Collaboration. As many of you will recall, there’s been a big effort to restore funding for disability related services here in California. We were pushing for a 10% increase, got a 5% increase only to lose even that in a budget deal. But there’s still time and need to be heard. Three rallies are being held here in California and we need people to attend and make themselves heard.

Here are the details.

LA, San Diego, and Sacramento rallies this week!

Dear Friends,

Believe it or not, the Legislature is planning to adjourn for the year in two weeks – and it shows no sign to taking action to save our developmental services by then.

Our community service system is crumbling now. We need to tell them forcefully, in person that we can’t wait until 2016.

Please come to one of the three Lanterman Coalition rallies this week to tell the Legislature’s leaders and members to get the job done before they go home. Their words of support aren’t enough – we need their action now!

The rallies will be:

· 11 a.m. TOMORROW (Tuesday, September 1) at the office of Senate leader Kevin de Leon, 1808 W. Sunset Blvd., Los Angeles. Click here for details.

· 11 a.m. TOMORROW (Tuesday, September 1) at the office of Assembly leader Toni Atkins, 1350 Front Street, San Diego. Click here for details.

· 10 a.m. THURSDAY (September 3) at the beautiful, historic Crest Theater, 1013 K Street, two blocks from the Capitol, Sacramento. At 12 noon (note time change), we’ll march to the Capitol to deliver the message in person. (Bay Area friends – we especially need you here Thursday).

Please come to at least one of the rallies – and bring some friends. If you can’t get to any of them on your own, ask your community service provider to arrange transportation.

As one of your professional advocates here in Sacramento, it’s amazing to me that the legislative leaders would even consider breaking for the year without acting. I can hardly imagine how infuriating it must be to people with developmental disabilities and their families, friends, and service providers like you.

Thanks to the coordinated advocacy of you throughout the state and us in Sacramento, every legislator now knows about our system’s crisis, and most of them have given us strong words of support. Now they need to hear from you that you need them to match their strong words with strong action.

Thank you for your advocacy.

Greg

Greg deGiere
Public Policy Director
The Arc & United Cerebral Palsy California Collaboration
1225 Eighth Street, Suite 350, Sacramento, CA 95814
916-552-6619 x4

SafeMinds: why won’t you tell your membership about the vaccine safety study you funded? Perhaps because it says vaccines are safe?

28 Aug

Earlier this year a paper was published on vaccine safety: Examination of the Safety of Pediatric Vaccine Schedules in a Non-Human Primate Model: Assessments of Neurodevelopment, Learning, and Social Behavior. This was a followup study to earlier pilot studies that got a lot of attention in the “vaccines-cause-autism” groups (Delayed acquisition of neonatal reflexes in newborn primates receiving a thimerosal-containing hepatitis B vaccine: influence of gestational age and birth weight and Influence of pediatric vaccines on amygdala growth and opioid ligand binding in rhesus macaque infants: a pilot study.)

It is worth noting that the pilot studies didn’t link vaccines to autism. They did make claims that some early reflexes were delayed in the monkeys given thimerosal containing vaccines. If you see someone talking about “root” or “snout” or “suck” reflexes in a vaccine discussion, they are referring to the studies above. These were pilot studies–small preliminary studies to see if it is worth launching a larger study. As such the results should have been taken with caution. But caution is not what groups like SafeMinds (or any of the groups that promote the failed vaccine-autism link) are known for. Inflating any scrap of evidence that can support their political point of view, that’s what they are known for.

SafeMinds made a big deal out of the early studies. Mark Blaxill (then of SafeMinds) called the study a “blockbuster” in a four thousand word analysis. That’s a lot of space to devote considering the full study was eight thousand words. And, as noted already, preliminary. But politics is politics.

Now, an intellectually honest person, or group, would watch for the followup study and report on it no matter the result. Because, let’s face it, if you are going to spend 4000 words overstating the importance of a study, scaring people and instilling them with guilt and pain over their child’s disability, you have a responsibility to do a follow up.

If you are intellectually honest.

So, as noted above, the follow up study was published. It was published in April. Four months ago. And I don’t see anything from Mr. Blaxill on the Age of Autism blog (where he posted his “blockbuster” article) or at the SafeMinds website on the followup study. SafeMinds has their own blog, and if you search it for, say “snout”, you get this article (Ground-Breaking Monkey Study: Mercury-Containing Hepatitis B Vaccine Causes Brain Damage) on the pilot study, calling it “groundbreaking” and claiming that it demonstrates that the thimerosal containing HepB vaccine causes brain damage.

Very strong words. Words which, if overblown, are very damaging. Imagine going through life as a parent thinking that you agreed to a vaccine and that caused brain damage to your child. Now imagine that the evidence you used to draw that conclusion was (a) not strong to begin with and (b) now refuted.

Wouldn’t you want to know the truth? Wouldn’t you expect the people and the organizations that convinced you of this falshood to seek you out and correct their mistake?

And this is why people don’t hold Mr. Blaxill or SafeMinds in high regard. They are quick to scare but don’t have the courage to admit they were wrong. Courage isn’t standing up and saying unpopular truths. Courage is standing up and admitting that your “unpopular truth” was, in fact, not the truth at all.

Now, why pick on SafeMinds in specific here? A lot of people and groups jumped on the pilot study and spread a lot of fear. Check out the footnotes of the study.

This work was supported by the Ted Lindsay Foundation, SafeMinds, National Autism Association, the Vernick family, and the Johnson family

SafeMinds helped fund the new study. The one they are ignoring. They were likely aware of the results before they were published. But no word.

I expect more from decent advocacy organizations. But I am not surprised with SafeMinds, nor Mark Blaxill.

Yes, the National Autism Association did too and they need to step up as well (a point I hope to make in a later article).

How about the Johnson Family? Well, the Johnson Center stepped up and put out a press release New Research Finds No Evidence That Thimerosal-Containing Vaccines Affect Neurodevelopment and Behavior in Infant Primates. (all SafeMinds, the Age of Autism and the National Autism Association needs to do as a start is publish the press release).

Here’s the last sentence of the press release, quoting the lead researcher: “Despite these limitations, the data in this primate study overwhelmingly provides support for the safety of pediatric vaccines”

It would take a lot of courage for SafeMinds and Mark Blaxill to publicize such a statement. More than they have.


By Matt Carey

The Hooker/Thompson conversations: were significant analyses omitted from Hooker’s paper?

27 Aug

As a few people have written about recently, a book was recently published in which we get to read transcripts of conversations between Brian Hooker (a vocal advocate of the idea that vaccines cause autism) and William Thompson (a researcher at the CDC).

The basic story we have been told is that supposedly the CDC team (of which Thompson was a member) saw a “statistically significant” association between MMR vaccination and autism in African American boys. Specifically for boys who got the vaccine late, but before age 3. The story then goes on to claim that he CDC team worked furiously to bury this association. William Thompson, wracked with guilt over this, finally reached out to Brian Hooker to guide him towards this result.

This story is full of holes, as has been discussed here and elsewhere. Rather than go through that again, just take this backstory and ask yourself: given this claim that significant results were omitted by the CDC, wouldn’t Brian Hooker make damned sure that nothing important was left out of the “reanalysis” paper? After all, the main criticism Hooker levied against the CDC team was omission.

You’d think so, wouldn’t you. But you’d also guess that I wouldn’t go through this long introduction if that was the case.

Brian Hooker sold his reanalysis as strong because he took a simple approach. I.e. he didn’t control for any confounding factors. Epidemiologists will tell you the opposite–a raw data analysis is suspect.

In the conversations, we hear that Brian Hooker was well aware that he would get criticism for not making corrections:

Dr. Hooker: Right. Right. Well, what would happen…Okay, so let me play this out … My paper gets published; my MMR paper gets published. They…I get heavily criticized, because I haven’t corrected for scioeconomic factors or maternal education. Yeah. I’ll take my hits, and then eventually it gets published. And then there’s a piece of information that I receive from the CDC, but I don’t source. Is that going to be a red flag?

OK, he knows that a “simple” approach is not considered strong. This begs the question: how important are socioeconomic factors and maternal education he’s worried about? I could tell you that they are huge factors for the conclusion he’s trying to make. But don’t take my word for it, because Hooker and Thompson did discuss the importance of maternal education in the recorded calls. And this discussion is very telling. Consider this exchange:

Dr. Hooker: Right. Right. Well, it does…You know, it does kind of play backwards.

Plays backwards–as in this goes against the story they are trying to tell. Going on:

Dr. Thompson: yeah.

Dr. Hooker:… in terms of: Will those kids that got vaccinated later; then you would expect less healthcare-seeking behavior; so they would be less likely to get an autism diagnosis.

Dr. Thompson: yep.

Yep?!? That’s all he can say? This is KEY to the entire argument that there is an increased risk in African American boys.

Let’s step back a moment and look at this issue. Brian Hooker’s reanalysis is based on very few subjects (seven–African American autistic boys who got their MMR vaccine late). Implicit in his “simple” analysis is the assumption that these boys were in every way similar to the other boys in the study, aside from autism and when they got their MMR vaccine. Let’s say that there’s a reason why these autistic kids were vaccinated late–like their parents didn’t have insurance so they didn’t go to well baby checks. This would correlate with the education of the mother and, thus, this variable could help control for this “health-care seeking behavior”.

This leaves us with a HUGE potentially confounding variable in Hooker’s analysis, and in precisely the population they are most interested in–the kids who got vaccinated later. But he don’t address it in the “reanalysis”. He sweeps it under the rug.

Which is to say, this is a very ironic conversation Hooker and Thompson are having. Hooker appears to be doing exactly what he claimes the CDC was doing: crafting a story around the results he wants to report and omitting important information to make that point.

The conversation goes on.

Dr. Hooker: But if you had maternal education, then you could correct for that.

Dr. Thompson: Right. But …

Dr. Hooker: So, I don’t think I have it.

Dr. Thompson: You could argue the most important confounder was not included in that study. So, why would you even consider the results valid?

Dr. Hooker:Valid.Right. Right, you can’t say either way.

Dr. Thompson: Exactly.

Dr. Hooker: Essentially.

Dr. Thompson: Yep.

Dr. Hooker: You can’t…

Let’s repeat one line for emphasis: You could argue the most important confounder was not included in that study. So, why would you even consider the results valid?

The most important confounder being maternal education. They know this is a big deal.

And this wasn’t just a passing thought in that conversation. Later in that same call, Hooker asked again about how strong an effect one could see from maternal education. In this case, from Thompson’s experience from his 2007 thimerosal paper. And again Thompson tells him that maternal education is a strong factor that should be included in an analysis.

Given this repeated discussion of the need to adjust your results for external variables, you’d expect Hooker to explore maternal education in his own paper, wouldn’t you? As in, do the math and see how much this factor affects his calculated relative risk for MMR in African American boys, right? At the very least, you’d expect a discussion similar to the one above–how this is a potential confounding variable and how exactly it could affect his results (it could go “backwards”).

You’d expect that of an ethical researcher. I would.

Here’s the thing: Brian Hooker did not include maternal education in his re-analysis. the closest he gets in in the final paragraph of his reanalysis paper. This is where he focuses on the weaknesses of his study. He goes into detail about age of diagnosis and how that might affect his results, for example. When it comes to maternal education the closest he says:

In addition, socioeconomic factors were not assessed in the current analysis. Thus, any differences in “healthcare seeking behavior” among individuals vaccinated ontime versus late could not be assessed.

Sorry to be so repetitive, but no word about how important maternal education or other socioeconomic factors are to precisely the conclusion he’s trying to draw. Just a statement that amounts to “controlling for socioeconomic factors can’t be done because I didn’t do it.” The data were available to Hooker in the birth certificates. Hooker even used the birth certificate data elsewhere in his paper (from the paper: “Georgia state birth certificate information was used to further obtain each child’s birthweight”). So he can’t say he didn’t have it.

This is ironic in the extreme: after complaining that the CDC left out a “statistically signficant” result, Brian Hooker doesn’t include a factor which he knows is a major without which one can’t consider the results valid.

I’ll go beyond ironic. This is in my opinion scientifically unethical. And, since his study is really more political than scientific, I consider this politically unethical. Frankly, if someone working for me did something like this as part of his work, he’d be fired.

But, wait, the story is even more strange. Recall how Thompson was bashing the original study (DeStefano, et al.) for being invalid due to not controlling for maternal education (“You could argue the most important confounder was not included in that study. So, why would you even consider the results valid?”). DeStefano et. al did control for maternal education. And not only should William Thompson and Brian Hooker have known this if they were reanalyzing the paper, William Thompson was a coauthor on the DeStefano paper!

One does have to wonder if Hooker did the analysis using maternal education and chose to not report it. Given the discussions he had with Thompson, my opinion is that either Hooker did the analysis or he’s incompetent.

Bottom line, though, if you are going to make some public relations/political hay claiming some group omitted a result, you shouldn’t be omitting important analyses yourself.

Were significant analyses omitted from Hooker’s paper? In my opinion, yes. And from his conversations with William Thompson, we see that Hooker was aware of the importance of factoring in maternal education.


By Matt Carey

Book review: Neurotribes by Steve Silberman

25 Aug Cover-large

A book I have been waiting literally years for comes out tomorrow. I’m speaking of Neurotribes (Amazon link), a book by Steve Silberman. I was lucky enough to obtain an advance copy to review. First let me say that there are a number of good reviews of Neurotribes by Steve Silberman already on the web. I highly recommend this one by Emily Willingham, which includes an interview with the author.

Having referred the reader to an excellent review, I’ll start here with a simple recommendation: buy the book. Or, at least, find a copy somewhere and read it.

If you are autistic, read the book. Silberman gives one of the most sensitive discussions of autism a non autistic can give.

If you are a parent or loved one of an autistic, read the book. If you are at the beginning of the journey, you may want to spend your precious extra time now on books that help you advocate (like special education focused books), but there will be a time when you want this book and will be grateful it’s on your shelf. If you’ve already gone through the advocacy learning curve, it’s a good book to get.

If you are a professional and think you understand how our present understanding of autism came about, you need to get this book. You will be surprised with what you didn’t know.

If you are not in the autism communities, Silberman is a wonderful writer and the book will give you a great read and you will learn a great deal about autism, autistic people and non-autistic people.

Neurotribes is a rather thick book on what seems a specialized subject and I worried at first that it wouldn’t be accessible or interesting to the average reader. But I was immediately struck by how beautifully Silberman’s writes. It is very accessible and entertaining to a general audience.

By now readers are probably wondering when I’m going to stop recommending the book and start reviewing it. Answer: now.

Autism is comprised of many very disparate topics and Neurtribes captures that, with each chapter touching on the various aspects of autism. First and foremost, autism is about people. Autistic people primarily. And Silberman approaches his book with a great sensitivity towards autistics. The book begins and ends with autistics. We start with Henry Cavendish a historical figure who was very likely autistic and ends with an epilogue about Mark Rimland, who has a key place in defining current perceptions of autism is. Mark’s father was autism researcher Bernard Rimland, who is best remembered for his role in defeating the idea that autism was caused by bad parenting. Mark was also one of the role models for the fictional character Raymond Babbit–Rain Man.

Silberman ends the book with a simple statement. And like many simple statements, many of us forget the message:

Midway through the journey of his life, Mark has the most precious and elusive thing that anyone can hope for. He is completely at home on earth.

Autism is a disability. It is a different operating system for the brain. It is a difference. It is so many thing. But all of us, autistic or not, autism parents or not, would do well to follow Mark’s example. Find our place.

Autism is also about non autistics. People who love autistics and people who research autism (and there’s a lot of overlap in those groups). And Silberman pulls all the various groups together in his telling of the story.

Silberman establishes himself as the foremost expert on the history of autism. How did Kanner and Asperger independently come up with the concept of autism (hint–they weren’t completely independent). Why did Asperger focus on the less clearly disabling aspects of autism (hint: he was at work at a time when disabled people in his country were rounded up and killed). We can go on and one, but these little snippets do not do justice to the depth that comes from the fact that Silberman has spent the past four years researching and writing this book.

The depth that Silberman brings to autism’s history (and present!) could easily become bogged down in the details. Neurotribes avoids this without sacrificing the detail. Autism is told through the people, people with personalities and people placed in the context of their time and culture. And that’s what makes this more than an example of thorough research but of skillful writing. We not only hear about Kanner and Asperger (the two credited with first describing autism), but of the people in their labs and the people who followed them. But mostly, of autistics. And not just autistic patients in clinics. We meet one of my personal favorite people, Leo Rosa (an autistic young man) and his mother Shannon. I met Shannon and Steve at about the same time, at IMFAR, an autism science conference, in 2011. We meet many more people and the book is influenced by literally hundreds of people, autistic and non, for whom there just wasn’t room in the book. By telling the stories through people, the book becomes a real read.

I realize that I have yet to discuss neurodiversity. The full title of the book after all is NeuroTribes, The Legacy of Autism and the Future of Neurodiversity. Silberman introduces the topic thus (referring to his 2002 Wired article “The Geek Syndrome”)

One of the most promising developments since the publication of “The Geek Syndrome” has been the emergence of the concept of neurodiversity:the notion that conditions like autism, dyslexia, and attention-deficit/hyperactivity disorder (ADHD) should be regarded as naturally occurring cognitive variations with distinctive strengths that have contributed to the evolution of technology and culture rather than mere checklists of deficits and dysfunctions. Though the spectrum model of autism and the concept of neurodiversity are widely believed to be products of our postmodern world, they turn out to be very old ideas, proposed by Hans Asperger in his first public lecture on autism in 1938.

and in another place, he states

Neurodiversity advocates propose that instead of viewing this gift as an error of nature—a puzzle to be solved and eliminated with techniques like prenatal testing and selective abortion—society should regard it as a valuable part of humanity’s genetic legacy while ameliorating the aspects of autism that can be profoundly disabling without adequate forms of support. They suggest that, instead of investing millions of dollars a year to uncover the causes of autism in the future, we should be helping autistic people and their families live happier, healthier, more productive, and more secure lives in the present.

One last note: autism’s history has some very low points. It can be very difficult to read about the Nazi eugenics program or the way some non-Nazi’s treated their autistic research subjects. I know that some, especially autistics, will find these sections painful to read.

That said, in case my recommendation was too subtle above: I recommend buying the book :)

Here are more reviews:

The Atlantic has Before Autism Had a Name.

The Guardian has: Neurotribes review – the evolution of our understanding of autism

The New York Times: ‘NeuroTribes,’ by Steve Silberman.

There are more if you search a site such as google news.

Cover-large


By Matt Carey

note: I have personally met the author of Neurotribes.

The Brian Hooker/William Thompson conversations

24 Aug

A year ago we learned that a CDC researcher (William Thompson) had reached out to Brian Hooker (of all people!) and was talking about his (Thompson’s) view of what goes on inside the CDC. Most especially, Thompson appears to have guided Hooker towards a spurious result one can obtain from an old CDC dataset: that if one avoids controlling for any possible confounding variables one can claim that in a small subset of the study population, there is a calcluated risk of autism from the MMR vaccine.

There are so many strange aspects of this story. So many. One that has wracked my brain for the past year is this: why did Thompson reach out to Brian Hooker? Brian Hooker is not an unknown quantity. In the world of people claiming vaccines cause autism, far from it. Brian Hooker is a fixture in the community that promotes the idea that vaccines cause autism. His claim to fame for years was that he was constantly placing freedom of information act (FOIA) requests for documents from the CDC. His family are petitioners to the Court of Federal Claims (i.e. they have a claim in about a family member whose autism they believe was caused by vaccines). Mr. Hooker even spoke with CDC vaccine researchers–including William Thompson–many years back.

In the end, Brian Hooker published a paper (now retracted), teamed up with Andrew Wakefield, totally misused their spurious result in an ugly, race-baiting attack on the CDC, and betrayed Thompson’s trust by outing him.

And pretty much all of that was predictable, if you had any idea who Brian Hooker is.

Given that, there were two possibilities in my mind as to why Thompson reached out:

1) William Thompson was so stressed by what he thought was an unreleased result that he reached out to someone, anyone outside of CDC to get the result out. That he wasn’t aware of who he was working with.

2) William Thompson either didn’t care about the harm that would be cause by his actions, or wanted to cause harm. Let’s face it, Thompson chose the precise person who could make the most damage with the information. It wasn’t a strong result, or even a good result. But it was something that an intellectually dishonest person could sensationalize.

(2) Was very hard to believe. Thompson has spent many years working on public health. He was the lead author on one paper that showed no risk of neurodevelopmental disorders from thimerosal in vaccines. The idea that he would willingly ally with someone whose efforts are very much, let’s say, vaccine antagonistic, is difficult to accept.

As noted above, Brian Hooker betrayed the trust of William Thompson: Hooker not only outed Thompson, but Hooker secretly recorded at least 4 phone calls. And purported transcripts of those calls have been gathered together in a book. The forward is by Robert Kennedy Jr. (who has a long history of claiming he’s “pro vaccine” while acting completely the opposite) and is filled out by a someone named Kevin Barry. It’s a thin book and the material by Kennedy and Barry is basically filler, so you are left with transcripts from 4 phone calls.

From the conversations in the book we see that Thompson is angry. Angry at people. Not as much angry about science or omitted data. You can read more about that at Science Based Medicine.

Was Thompson aware of who he was dealing with in Brian Hooker? Yes. He says, “I see a lot of your stuff online. I saw that you interviewed Congressman Posey, is it?”

There’s a lot of talk of Posey and Congressman Issa. It seems like Hooker’s connections with congress were a big draw for Thompson.

Here’s one exchanges. Not about congress, but we get an idea of Thompson at work.

Dr. Hooker: I’m afraid of those people. I’m afraid of Kevin Malone. I’m afraid of Deborah Tress, I mean, these people, ya know, they don’t like me.

Dr. Thompson: They’re scumbags. But here’s the deal. She is like a twenty-five-year-old and I apologize as I am saying this, she’s like a twenty-five-year-old bimbo that they have do their dirty work. So her sending this email, the fact that they didn’t come from someone with a lawyer. It came from this woman who’s just out of school and just doesn’t know her head from her ass. This is the type of stuff they do. They don’t say who it’s from, they just say OGC.

Here’s a quote attributed to Mr. Thompson:

“But I also have to say these drug companies and their promoters, they’re making such a big deal of these measles outbreaks and they are now, they’re making a big deal that polio is coming back and polio comes back all the time in third world countries. It’s like a never- ending thing where the press loves to hype it and it scares people. It scares the crap out of people when they hype those two types of outbreaks”

Really? A vaccine researcher at CDC thinks it’s “hype” to talk about polio coming back?

Here’s the thing–we want to eradicate polio. That’s what vaccine researchers at CDC are supposed to be helping. Polio is really bad. If it weren’t for people like Brian Hooker, Thompson’s new friend, we might have done that by now. Any outbreak is a big deal. But not to William Thompson.

Boggles the mind.

In discussing the MMR paper–the one where Hooker claims a large risk for MMR in African American boys who are vaccinated late (by not controlling for any confounding variables)–Hooker notes in his conversation:

“I mean, whites are getting diagnosed twice as much as blacks”

That’s a pretty key observation. If you are going to claim a large risk for African American’s, you have to discuss in your paper the fact that this doesn’t mesh with the actual prevalence. The raw prevalence has African American’s not getting counted as much as caucasians.

Does Brian Hooker bring this up in his paper? Address it? No. He ignores a significant result of the analysis. That’s right, he does exactly what he claims is fraud. Well, not exactly–he compounds his error. Let’s look at his (now retracted) paper:

It should be noted that a recent publication has shown that the prevalence of autism in African Americans is nearly 25% higher than that of whites [15].

Yes–even though the data he is analyzing says exactly the opposite, he claims a higher than average prevalence of autism in the African American population.

Let’s belabor that one step further–if he actually believes a higher prevalence in this population, there is a huge issue with the data he’s analyzing. He doesn’t account for this, controlling for any socioeconomic factors, for example. He doesn’t even mention it. It appears that he intentionally omitted significant findings from his paper.

Hooker at one point notes, “I am not an epidemiologist by training”.

Got that right.

You can read more about the conversations at Science Based Medicine as
Vaccine Whistleblower: An antivaccine “exposé” full of sound and fury, signifying nothing

And I’m sure there will be more.


By Matt Carey

Orlando Sentinal: Rep. Posey at center of vaccine-autism fight

22 Aug

As many readers here will be familiar, Congressman Bill Posey has taken up the position of chamion for the “vaccines-cause-autism” groups. He’s been heavily lobbied and somehow convinced that vaccines cause autism.

As I’ve noted in the past, Congressman Posey doesn’t take up autism or disability legislation. As of last year he wasn’t a member of the Congressional Autism Caucus (he appears to have recently joined). He wasn’t one of the 86(!) cosponsors of the Autism CARES Act (passed last year, this continues the Government’s commitment to autism research support).

Until now, his alliance with these groups–groups who cause a large amount of harm within the autism communities–has gone unnoticed by the press. Today an article appeared in his home town newspaper, the Orlando Sentinal. The article is Rep. Posey at center of vaccine-autism fight. You need to register (it’s free) to read the article.

Congressman Posey stresses again his opinion that he is pro-vaccine. While at the same time promoting the failed vaccines-cause-autism idea and, now, suggesting that people spread out the MMR vaccine into separate shots. Besides the fact that the MMR-causes-autism idea is one of the most studied subjects in autism causation (MMR does not increase autism risk), Mr. Posey exposes his ignorance–both of the current state of the U.S. vaccine market and of history. Separate measles, mumps and rubella vaccines are not available in the U.S.. There just wasn’t much market for them. And we all saw what happened when Andrew Wakefield promoted the “Let’s scare people about the MMR and suggest separate vaccines” back in the U.K.. People stopped vaccinating for measles altogether. And now measles in endemic in the U.K. and large outbreaks have been seen in recent years.

Matt Carey, a nationally known advocate on autism issues, questioned Posey’s self-description as “pro-vaccine” and his advice to mothers, because, he said, measles vaccines no longer are available outside the MMR shots.

“So what is a parent going to do? If you put fear into people like that, they will do neither, and they won’t vaccinate,” Carey said. “If you’re pro-vaccine, and you’re not really doing anything about it except carrying water for people who aren’t pro-vaccine, it’s a distinction without a difference.”

He says he’s “pro vaccine”. Let’s look at current legislation:

Is he a sponsor on H.R.2232 – Vaccinate All Children Act of 2015? (no)

H.R.933 – Head Start on Vaccinations Act? (no)

H.Res.117 – Recognizing the importance of vaccinations and immunizations in the United States. This bill has 101 cosponsors! And none of them is Bill Posey.

There are more bills in the works, but you get the picture: He’s pro-vaccine in words. Not in actions.

As to helping the autism communities–he does nothing for the autism communities. In fact, he’s part of the problem. He’s promoting the most damaging idea since Kanner and Bettleheim blamed “cold parents” for causing their children’s autism. In the Orlando Sentinal article Mr. Posey falls back on the same defense that is too often used: he’s just listening to the parents

The alleged link has been widely denounced by much of the U.S. medical community, but Posey said he is influenced by the hundreds of parents he has talked with.

“They say, ‘My son was OK until we took him for an MMR [measles, mumps and rubella shot], and since then he didn’t say another word,'” he said. “And [the parents] are crying. I believe the mother knows more about a child than anyone else. So, anyway, my hearing from so many people made me think: It can’t be coincidental.”

Here’s the thing he should be considering–parents are in pain. They are being served up wholesale for charlatans that sell all manner of abusive “treatments”. Did you manage to walk the halls of AutismOne, Mr. Posey? Did you catch the new thing? Forcing disabled children to undergo bleach enemas? Twice daily? Did they tell you that the same people promoting thimerosal as a cause of autism are also promoting chemically castrating autistic kids? Seriously–by attending AutismOne and not speaking out, you are giving tacit approval to these abusive practices–and more.

Mr. Posey may call himself “pro vaccine”. He may think he’s helping the autism community. His actions tell a very different story.


By Matt Carey

Emily Willingham takes on the Tempest in a Trashcan

21 Aug

In case you missed it (and count yourself lucky if you did), Congressman Bill Posey recently read a statement into the record in the U.S. House of Representatives. That was 2 weeks ago (July 29th). I put off writing about it for various reasons, including not having the time to do check on some of the facts. Luckily, Emily Willingham did: A Congressman, A CDC Whisteblower And An Autism Tempest In A Trashcan.

For those unfamiliar with the story, here’s a background timeline–

About a year ago it became public that a CDC researcher by the name of William Thompson had made the monumentally bad decision to ally himself with Brian Hooker. Brian Hooker is an autism parent and a major proponent of the idea that thimerosal in vaccines cause autism. As an autism parent myself, I find Mr. Hooker’s stance to be damaging to our communities. As a researcher, I find Mr. Hooker’s lack of scientific integrity (see this discussion for example) to be an example of the worst that the research community has to offer. To put it simply, he lies with statistics to make a political point. While one could argue that he sold out for his own cause, the fact remains that he sold out. So, again, I consider Mr. Thompson’s decision to reach out to Brian Hooker to be an incredibly bad choice. Perhaps someday we will learn why Mr. Thompson didn’t take his concerns to the appropriate channels.

That all said, Mr. Thompson appears to have turned over a number of documents as well as statements to Congressman Posey’s office. And Mr. Posey read excerpts of a statement into the record. Before we get to the “trashcan quote” let’s focus on one word–excerpts. Excerpts mean that we aren’t being told everything. And as anyone who has followed Andrew Wakefield for any period of time knows, often it’s what people aren’t telling you that matters.

So, what is the “trashcan quote”? Per Emily Willingham:

At the bottom of Table 7 it also shows that for the non-birth certificate sample, the adjusted race effect statistical significance was huge. All the authors and I met and decided sometime between August and September ’02 not to report any race effects for the paper. Sometime soon after the meeting, we decided to exclude reporting any race effects. The co-authors scheduled a meeting to destroy documents related to the study. The remaining four co-authors all met and brought a big garbage can into the meeting room and reviewed and went through all the hard copy documents that we had thought we should discard and put them in a huge garbage can. However, because I assumed it was illegal and would violate both FOIA and DOJ requests, I kept hard copies of all documents in my office and I retained all associated computer files. I believe we intentionally withheld controversial findings from the final draft of the Pediatrics paper.

(note–one punctuation changed. I believe it to be incorrect in the original at Forbes).

As you can imagine, people are focused on the idea that the CDC destroyed documents.

Let’s back up for a moment and go back to fact that these are excerpts. That means that we don’t know what was deleted or where. Between any two sentences there could be other sentences or another paragraph. Take for example, these two sentences from Posey’s talk:

“‘At the Sept. 5th meeting we discussed in detail how to code race for both the sample and the birth certificate sample. At the bottom of table 7, it also shows that for the non-birth certificate sample, the adjusted race effect statistical significance was huge.”

Here’s the thing–I’m, pretty sure there is content missing between those two sentences. Why? Because the Sept. 5 meeting was a planning meeting. They were deciding how to analyze the data. And then, bang, we hear about “table 7” and a race effect. But there wouldn’t be data at the September 5 meeting. The team didn’t start getting results until November. This according to the information released by Andrew Wakefield and Brian Hooker themselves. There’s no reason for “also” in that last sentence in the present context.

Why point this out? Well, for one it shows that we are getting an edited version of the statement. And it’s not just a random edit. The above statement appears to me to be crafted to support the story that Wakefield and Hooker put out a year ago: that the CDC team added the birth certificate analysis after seeing the race effect. You read the above and it’s easy to get the feeling, “Dang, they had table 7 in front of them and they added the birth certificate analysis”. But that’s not what the actual timeline tells us. According to the information Wakefield and Hooker themselves presented, the first race data were analyzed and presented a few months later.

That’s an example of creative editing of the excerpts that makes me want to see more. And not just more of what Mr. Thompson has to say as, frankly, I want the facts and I don’t think that his side of this story will be the complete truth.

So, let’s get back to the “garbage can quote”. Are there sentences edited out? Who knows. Does it represent the facts? Also, unknown. But let’s consider the idea that the CDC team met and discarded documents. Am I surprised? No. Researchers don’t keep every document. I’ve been a researcher for 30 years (almost all in a non-government position, I admit), and I can say that as someone who had to be prepared to (and in fact did have to) defend an invention against legal action: you don’t keep every document. You keep what you need to keep, what allows you to recreate the study.

I started back in the day when most data were on paper. A lot of paper. Think a 3″ binder of paper in a week or 2. Over years. That’s a lot of paper. Here’s the process my former employer used–possibly different at CDC, but I’m guessing not too different. After a while one would have to decide: what do I keep, what do I put into storage and what do I discard? What I may need to look through again stays in my office. The core of the work goes into storage. (There are probably still boxes and boxes of my old results and notes in my former employer’s wharehouse.) The rest–the stuff that you don’t need to keep, and this can be a lot–gets shredded.

How do you shred lots of confidential material? Well, you order a big bin. One could call such a bin a “garbage can”, but that would be misleading. Here’s what the bin looks like:

It looked like that except that it said, “Confidential” on the side and something about shredding. Notice the lock on the bin? It’s because you are working with confidential materials. It’s routine. Dull really. But that’s not what people want to hear. They want to hear “garbage can”.

And here’s another thing–you don’t get a group of people together to decide what to discard. That’s easy. I imagine especially if you think that the paper documents are incriminating–you would destroy everything. You get together to decide what to keep. No reason for everyone to keep every printout from every internal presentation.

What would happen if a team at the CDC dumped a bunch of confidential material into a garbage can? Well, a big batch of paper would get noticed by the people handling the garbage. And that would create a huge problem for you–mishandling of confidential materials.

Throwing a lot of material into the garbage is not a way to hide your tracks. Much the opposite.

I wasn’t there to see what happened with documents for that study. And, per the statement that Congressman Posey read, neither was William Thompson. And there is an investigation ongoing into this study. Andrew Wakefield and Brian Hooker filed a complaint with HHS/CDC and it is being investigated.

Sorry, but Congressman Posey’s statement really is just not that interesting right now. Well, I am interested if he wrote it and if (as I assume) someone else did, who that someone is. But that’s just mild curiosity.


By Matt Carey

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