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Is CDC to announce 1 in 100 autism rate?

18 Dec

And, if so, is SafeMinds trying to play games with Google news to get their story on top?

What happens when you are the first to break a big news story, at least in terms of Google News? Well, quite often your story gets to be the top story.

On Wednesday, SafeMinds put a piece on the Age of Autism Blog CDC Study Expected to Announce 1 in 100 Autism Rate—A Startling 50% Jump in Just Two Years. Evidence Points to an Environmental Trigger. Then, on Thursday, basically the same piece reappeared as CDC Brings Bad Tidings: 40,000 Children Diagnosed With Autism In This Year Alone. They open with:

Atlanta, GA – A study to be released Friday by the Autism and Developmental Disabilities Monitoring (ADDM) Network of the Centers for Disease Control (CDC) is expected to report that autism prevalence has reached the epidemic rate of 1 in 100 children.

Usually when a new study comes out, journals or the CDC will release some information to the press on the condition that they respect the “embargo”. That is, everyone is supposed to wait until the same time before going public with the information.

There are advantages to not playing by the rules. When you get your story out first, especially on a big story, you can try to influence other stories and you can ride the top of the wave of press coverage.

Take a look at Google News for a big story and often there is a “lead” or top story. No one wants to be burried in the mass of stories. Get your story out first, and, hey, maybe you will be the top story.

That would be a big public relations coup for SafeMinds. At the same time, we have to ask: if SafeMinds is correct, are they breaking an embargo? The release of information about a recent Pediatrics study claiming a 1% autism prevalence caused some bad press for the autism community (also here and here).

Let’s watch. Will SafeMinds put out yet another post Friday morning, just in case? Will they succeed in getting a prominent spot for their pieces? Will journalists covering the story contact SafeMinds or use their material for stories?

The CDC autism prevalence estimates are made via MMWR’s (Morbidity and Mortality Weekly Reports). The previous report was from 2007, using data collected in 2002, with the 1 in 150 prevalence estimate that has been commonly quoted.

If you recall, the existence of the upcoming MMWR was leaked a few months ago. Lee Grossman, president of the Autism Society of America, somehow found out and talked publicly, and David Kirby blogged it. Of course, Mr. Kirby found a way (or was told a way) to include this as evidence of vaccines causing autism. The argument being that the Hepatitis B vaccine was given to those kids. It didn’t matter that the other dataset he was discussing in that same post, from the National Children’s Health Survey, didn’t support the idea at all. SafeMinds seems to be making the same arguments in their blog pieces as well.

If SafeMinds is correct and the announcement comes out Friday, expect updates on the CDC autism data page, and the CDC autism page. But, hey, expect about 5,000 news articles too.

Why don’t the so-called “vaccine safety” orgs talk about vaccine safety?

30 Oct

I really do plan to get back to real autism related subjects. I do. This subject just came up yesterday and it really bugs me so I decided to write something quick.

One of the most common statements from the groups (Generation Rescue, Think About Curing Autism (TACA), the National Autism Association, SafeMinds….) who promote the vaccines-caused-autism-epidemic idea is that they are “vaccine safety” groups, not “anti-vaccine”. The self-named “National Vaccine Information Center” is, I would think, supposed to have vaccine information.

One vaccine these groups love to hate is Rotateq, a vaccine against rotavirus infection. Why? Because it was invented by a team including Dr. Paul Offit, who just so happens to be one of the most vocal critics of the vaccine-caused-autism-epidemic.

Take, for example, this comment by SafeMinds member, and Age Of Autism blogger Mark Blaxill:

“Paul has saved hundreds of thousands of lives (granted mostly in underdeveloped countries, but rotovirus still kills a small few in the US).”

That’s quite an extravagant assertion, and almost certainly false. What evidence do you have that Rotateq (Offit’s invention) has been adminstered in sufficient quantities to prevent death in developing countries from complications of diarrhea? Rotateq is deployed in only one country besides the US. Here in the US we know Rotateq (and Rotashield before it) has CAUSED death and have little information that it has prevented any.

The consistent hyping of the benefits of marginally beneficial vaccines is one of the most disturbing features of a vaccine development industry run amok. Rotateq is perhaps the most egregious example of a vaccine product that provides next to zero benefit in the markets in which it has been deployed.

Let me be clear. In the markets in which it might have value, Rotateq is far too expensive to be widely deployed and is therefore rarely used. In the markets in which it is not needed, it is mandated at high prices and used widely with little benefit and documented (and almost certainly underestimated) serious risk. Those mandates and high prices are justified by a marketing non sequitor that Josh perpetuates here: pointing to deaths outside the geography in question as justification for a vaccine blockbuster that can have no impact whatever on those deaths.

Orwell never dreamed of doublespeak as bad as this.

What made this comment stick in my mind is the unsupported claim that Rotateq “CAUSED” death (nice use of all caps, there, by the way).

I am also drawn to the common belief (not directly expressed in the above quote) that there is no or only minimal safety research done.

This week, the CDC put out an MMWR (Morbidity and Mortality Weekly Report) on the effects of Rotateq. The cliniical trial showed that Rotateq works. The surveillance shows Rotateq works–the number of submitted samples that tested postive went down after Rotateq was introduced.

The big point I’d like to bring to light was a recent talk given at the Advisory Committee on Immunization Practices (ACIP) meeting. They are monitoring intussusception in children given Rotateq. Intussusception is an intestinal problem, potentially fatal, that was linked to the previous rotavirus vaccine. It is why that vaccine, Rotashield, was pulled from the market. As such, it is good an proper that they monitor intussusception with Rotateq.

The results?

Results provide no evidence that RotaTeq®receipt is associated with an increased risk for IS [intussusception] 1-30 days or 1-7 days following vaccination.

Typically those trying to claim that Rotateq is dangerous use the Vaccine Adverse Events Reporting System (VAERS). Any event reported to VAERS is taken to be caused by the vaccine. VAERS is a “passive” system. People report into VAERS and no one checks that the diagnoses are accurate. Also, intussusception happens even without vaccines. So you really can’t take every VAERS report as a causal event–i.e. just because someone reports to VAERS that a child had intussusception sometime after Rotateq, that doesn’t mean Rotateq caused it.

Do I expect people like Mr. Blaxill to stop claiming that Rotateq is dangerous? No. But I put this out there to take away any last shred of “plausible deniability”. They, the self-styled “vaccine safety” groups, don’t report on actual vaccine safety studies. That doesn’t mean they don’t read them and know about them.

Are blood mercury levels an important metric in autism?

26 Oct

A recent study shows that autistic children do not have more mercury in their blood than typical children. When it came out I didn’t have time to discuss it. I have some time now, and other people have blogged it, so I decided it was time to address some thoughts here.

The study, from the U.C. Davis MIND Institute: Blood Mercury Concentrations in CHARGE Study Children with and without Autism concluded:

After accounting for dietary and other differences in Hg exposures, total Hg in blood was neither elevated nor reduced in CHARGE Study preschoolers with AU/ASD as compared with unaffected controls, and resembled those of nationally representative samples.

This paper and its conclusion were sure to be criticized by the alternative-medical autism community. Why? because the autism communities are still battling the idea that autism is a “novel” form of mercury poisoning. Anything, no matter how small, that challenges that idea will be (and is) challenged.

The idea that autism and mercury poisoning are similar was put forth in a paper in the pseudo journal Medical Hypotheses. The paper, Autism: a novel form of mercury poisoning, by SafeMinds founders Bernard S, Enayati A, Redwood L, Roger H, Binstock T., purported to show similarities in autism and mercury poisoning.

The abstract of the SafeMinds paper states:

Autism is a syndrome characterized by impairments in social relatedness and communication, repetitive behaviors, abnormal movements, and sensory dysfunction. Recent epidemiological studies suggest that autism may affect 1 in 150 US children. Exposure to mercury can cause immune, sensory, neurological, motor, and behavioral dysfunctions similar to traits defining or associated with autism, and the similarities extend to neuroanatomy, neurotransmitters, and biochemistry. Thimerosal, a preservative added to many vaccines, has become a major source of mercury in children who, within their first two years, may have received a quantity of mercury that exceeds safety guidelines. A review of medical literature and US government data suggests that: (i) many cases of idiopathic autism are induced by early mercury exposure from thimerosal; (ii) this type of autism represents an unrecognized mercurial syndrome; and (iii) genetic and non-genetic factors establish a predisposition whereby thimerosal’s adverse effects occur only in some children.

The paper is discussed on the SafeMinds website as a “cornerstone document”:

In April of 2000, SafeMinds founders put forth the first definitive work reviewing the link between mercury and Autism Spectrum Disorders. This effort showed that the autism presentation mirrored mercury toxicity. This research was key to propelling the issue into the awareness of the public and government officials. The resulting report, “Autism: A Novel Form of Mercury Poisoning” (Bernard, Enayati, Redwood, Roger, Binstock) was and remains recognized as a cornerstone document to the discourse on medical mercury exposure and toxicity and its effects on health.

They still hold to this idea, even though the it has been thoroughly rejected by actual specialists in mercury toxicity. Heck, it’s been rejected by non-specialists. Autism and mercury poisoning are just not the same thing.

If you spend any time with the online autism community you already know the mercury hypothesis is still alive and well. Chelation, a drug therapy to remove some of the body’s mercury burden, is still applied to autistics by alternative medical practitioners. Join one of many autism discussion groups and the idea is bound to come up.

Given that, it may seem counterintuitive that the evidence for the mercury hypothesis is so weak that any study that purports to support it is quickly cheered by the alternative medical community.

Such was the case when, in 2007, two researchers looked at what was then an already existing dataset of blood mercury levels in autistic children and declared that contrary to the previous reports, autistic kids do have high levels of blood mercury. The reanalysis paper, Blood Levels of Mercury Are Related to Diagnosis of Autism: A Reanalysis of an Important Data Set, was itself immediately reanalyzed (epiwonk, epiwonk-2, Autism Street, leading to a response analysis by the Age of Autism blog, to name a few).

The quick and multiple responses to the DeSoto paper serve show how important the idea of autism as mercury poisoning is in some circles.

Shortly after the DeSoto paper came out, Mark Blaxill of SafeMinds (a very vocal proponent of the mercury hypothesis) wrote at the Age of Autism blog:

This is an important and unexpected finding. It supports one of the central hypotheses at the heart of the autism-mercury controversy and suggests that the excretion deficit in autistic children might persist longer than anyone had guessed

Mr. Blaxill has also used the DeSoto paper in his congressional briefing to support the idea that “Autistic children metabolize mercury differently”. Beyond the question of whether DeSoto is an accurate analysis of the data, this assertion by Mr. Blaxill is clearly not what the DeSoto paper showed.

That said, Mr. Blaxill’s remarks show how the DeSoto paper was obviously a major milestone in the attempt to legitimize the mercury hypothesis.

This struck me as odd at the time, as the prevailing wisdom was (and remained) that blood levels of mercury were not a good metric. Check any autism-biomed discussion and you will find loads of discussions about all sorts of odd tests for mercury: chelation challenge tests, urinary porphyrin tests, hair tests…pretty much everything except blood tests. The reason is simple, and sad. Autistic kids aren’t suffering from mercury poisoning, and blood tests show it.

The recent MIND Institute paper clearly refutes the DeSoto analysis paper. The MIND study is larger and uses a cohort of kids of similar ages (DeSoto uses a broad age range) and, very importantly, the MIND study controls for mercury exposure from diet and other sources. These are factors missing in the data analyzed by DeSoto. This puts the alternative medical autism community into a bit of a quandary. The MIND Institute and the lead author (Dr. Hertz-Picciotto) are well respected in those quarters as they generally support the idea of a real rise in autism incidence and the idea that vaccine-causation should be researched. And, yet, the MIND study would speak against autism as mercury poisoning.

One thing about waiting to do a longer blog post is that I can see what others have said. For example, the comments over at the Age of Autism blog were predictable in suggesting that blood levels are not an accurate metric. Here are a cpouple of examples:

This study on children’s BLOOD mercury levels does not take into account the fact that the mercury (and aluminum) is stored in tissues and organs including especially the BRAIN. The body protects itself from heavy metals by encapsulating this in fat cells especially, and in an infant or child, the largest concentration of fat is in the brain. The vast majority of the mercury (and/or aluminum) is NOT IN THE BLOOD.

and

Blood levels are always inaccurate. Best to get urine after chelation, then you see the difference. Even kids with autism, after many rounds still don’t dump the stuff. And by the way, selenium soils is a key thing Maria…because the lowest selenium soil states have the highest autism. And visa versa. Lest we forget, many other metals also cause problems…did they look at those or bother?

And let’s get this straight…mercury not only causes autism, it causes behavioral problems, immune problems, metabolic problems….just looking at one aspect of the outcome is not a study.

Another desperate attempt to downplay mercury, not going to work guys…

I bring this up because similar observations were not made when the DeSoto paper was being discussed. Yes, even though the prevailing wisdom is that blood levels of mercury are not the “correct” metric, none of the people at blogs like the Age of Autism spoke up.

Back to the present, I note also the SafeMinds response to the MIND Institute study, which includes this line:

Research has demonstrated that certain subgroups, including children with autism, show potentially higher susceptibility to environmental stressors like mercury (James, 2009; Ralston, 2008; Sajdel-Sulkowska, 2009). Some recent studies have indicated increased mercury in tissues and organs of people with autism relative to controls (Adams, 2007; Sajdel-Sulkowska, 2009; Desoto, 2007; Desoto, 2008). Given equivalent exposures, as indicated by the CHARGE study, SafeMinds feels that it is imperative that research is conducted that determines not only exposure, but differences in how individuals with autism handle mercury exposures and its impact to the body’s tissues and organ systems.

Yes, that is the same DeSoto paper they are citing. I am a bit of a loss as to what SafeMinds is trying to say. They cite DeSoto, an analysis of a study which did not control for exposure and because of this is a paper which to this observer is clearly refuted by the MIND Institute study. Without controling for exposure, DeSoto can’t be claimed to show increased mercury in tissues.

Sound confusing? That’s because it is. Mercury in the blood is important to the biomed community. At least it is if it is a paper (like DeSoto) that supports the idea that mercury causes autism. Mercury in the blood is not important if the paper (like the one from the MIND Institute) doesn’t support the link. The DeSoto paper is important because it supports the hypothesis, even when SafeMinds are using the MIND study which refutes DeSoto…

Yes, all this is confusing. There isn’t a consistent view on whether blood levels are important, except to say that data which supports the mercury hypothesis is good, data which doesn’t is bad.

If this is so confusing, what can we say? We can say that no, mercury in the blood is not a good metric for anything having to do with autism. Not because blood levels aren’t a good measure, but because autism is not a novel form of mercury poisoning.

The war on Tom Insel and the IACC

23 Oct

Tom Insel is director of the National Institute of Mental Health (NIMH) but he is better known to readers of this blog as the chair of the Interagency Autism Coordinating Committee. If you read other autism blogs, he’s probably very well known to you, as he has been the target of a concerted attack from the vaccines-cause-autism groups for a few months now. They even got the publicist, David Kirby, to take their battle to the public in a CBS interview.

Let me take a moment to make a side point. The vaccines-cause-autism groups (SafeMinds, Generation Rescue, the National Autism Association, Talk About Curing Autism (TACA)…I’m probably missing one or two), are basically a single consortium as evidenced by their single blog and their shared membership. I don’t see the need to treat them as separate entities. I really don’t see that they should be given multiple representations on the IACC.

I’ve been watching the IACC pretty closely for some time. I’ve also been watching the vaccines-cause-autism consortium. I’ve been watching the consortium build pressure against Dr. Insel.

One thing I’ve noticed: this level of pressure directed at Dr. Insel wasn’t always the case. Less than a year ago, Dr. Insel was not their target.

Take a look at one of the classic pieces of IACC intimidation: a piece called “Grinkers Stinker“. This is dated January, 2008. It was timed to coincide with a 4-day workshop that was the kick-off for the Strategic Plan process.

“Grinker’s Stinker” was a piece about the Dr. Joyce Chung, the former IACC coordinator. She is the wife of Prof. Roy Richard Grinker, anthropologist and author of the book Unstrange Minds. Dr. Grinker has publicly stated that he accepts the scientific consensus that vaccines did not cause an epidemic of autism. Dr. Chung has made no public statements (at least that I can find), but the lack of actual information about her or her opinions didn’t stop a blog post decrying her position on the IACC. From the blog post:

Does Joyce Chung agree with her husband? Did they ask her this question before she took the job?

Oddly, the last comment to that blog piece, by Generation Rescue’s “DC Liason” Kelli Ann Davis, starts with the question, “Can I suggest that we try and put an end to all the mudslinging?”

History has proven that, no, the Age of Autism can’t put an end to the mudslinging. Unfortunate, that.

Take a look at the blog post. There is no mention of Dr. Insel. No one decrying his “lack of leadership”, no one claiming “collusion” or “malfeasance”. None of the mudslinging terms currently used against members of the IACC, especially Dr. Insel. In fact, the first mention of Dr. Insel is in the comment by Ms. Davis. In her comment Ms. Davis suggests that Dr. Insel will be watching out for conflicts of interest.

Times certainly have changed. The Age of Autism likes to demonize those it disagrees with, and Dr. Insel certainly has been a recent target.

What happened?

Dr. Insel (a) had the IACC reconsider an initiative to call for a vaccine-autism study to be included in the Strategic Plan and (b) spoke before a congressional hearing about why vaccine/autism studies are not a high priority.

Not surprising to many of the readers here, I am sure, the vaccines-cause-autism consortium have a single issue (vaccines). As long as Dr. Insel’s position on vaccine/autism research, there was hope for the consortium and they left him alone. Once his current opinion formed and was public, he was public enemy number one. Yes, Dr. Paul Offit (vaccinologist and outspoken critic of the notion that vaccines cause autism) has been superseded.

Recently, Dan Olmsted (owner of the Age of Autism website) called for Dr. Insel to resign. Again, it boils down to the single issue: vaccines.

So, here we are. The vaccines-cause-autism consortium has declared war on Tom Insel for opposing their single-item agenda. If you think “war” is too strong a word, take it up with Mr. Olmsted. In referring to the recent incident where notes from an IACC member were made public:

…notes dropped on the floor (see the notes here) at the IACC, recovered by friendly forces and reported on our blog…

Yes, the Age of Autism people are “friendly forces”.

Here’s my perspective on Dr. Insel, for whatever it may be worth. He is the chair of the IACC. In my opinion, his role is to run the meetings and manage the staff. He should be getting good people in to serve on the IACC and the subcommittees and good people to consult on the topics that are discussed. Basically, his role is that of a facilitator–get good people together with the tools they need to do their job. He needs to be knowledgeable enough on the subject (autism) to do this.

You know what? Given the fact that his full time job is director of the NIMH, he’s actually done a pretty good job.

Is there room for improvement? Heck yeah. How about putting a greater emphasis on research into the needs of autistic adults? The majority of autistics are adults. And yet only 5% of the funding is being applied to this critical area.

But, of course, the squeaky wheels (the vaccines-cause-autism consortium in this case) get the grease. The squeaky wheels have been calling for research into environmental causes of autism. Tens of millions of dollars are being focused on this. Why are the squeaky wheels unhappy? Because the squeaky wheels didn’t really mean “environmental causes”. That was only a code word for vaccines.

This level of tension is not just sad. It is detrimental to the progress of the IACC. There are a lot of autistics, parents, professionals and organizations who are interested in working with the IACC. Why spend any more effort on the groups that have declared war?

(note, I made a number of changes in this piece shortly after publishing it)

It’s time to stop the intimidation tactics towards the IACC

21 Oct

The Interagency Autism Coordinating Committee (IACC) is group of government employees and autism community stakeholders who are chartered with coordinating research activities within the U.S. government’s Department of Health and Human Services (HHS).

The official charter is:

The Interagency Autism Coordinating Committee (Committee) shall coordinate all efforts within the Department of Health and Human Services concerning autism spectrum disorder to combat autism through research, screening, intervention and education. The Committee’s primary mission is to facilitate the efficient and effective exchange of information on autism activities among the member agencies, and to coordinate autism-related programs and initiatives. The Committee will serve as a forum and assist in increasing public understanding of the member agencies’ activities, programs, policies, and research, and in bringing important matters of interest forward for discussion.

The IACC predates the Combating Autism Act (CAA), but has taken on the role of coodination and strategic planning for the CAA.

This is no small effort. We are talking about a group that helps to set the goals for about $100M in research funding a year. The U.S. government’s research efforts into autism are the largest in the world. The research portfolio covers causation through supports for autistic adults.

I don’t think I will surprise anyone when I say that the autism communities, like any communities, have many different ideas of what focus should be placed on autism research. I would also expect little argument that the loudest voice in that discussion comes from the groups promoting the notion that vaccines caused an autism epidemic. Most of these groups are sponsors of the Age of Autism blog.

These groups lobbied hard to get vaccine research included in the Combating Autism Act. The failed. They did manage to get some senators to mention vaccines in the “colloquy“. These were statements made by senators when the Act was passed. Basically, these are speeches, not law. These statements were also not very strong. Consider this statement by Senator Enzi:

However, I want to be clear that, for the purposes of biomedical research, no research avenue should be eliminated, including biomedical research examining potential links between vaccines, vaccine components, and autism spectrum disorder. Thus, I hope that the National Institutes of Health will consider broad research avenues into this critical area, within the Autism Centers of Excellence as well as the Centers of Excellence for Environmental Health and Autism. No stone should remain unturned in trying to learn more about this baffling disorder, especially given how little we know.

The strongest argument that can be made is that three senators made a nonbinding statement that the National Institutes of Health should “consider” research on vaccines.

The Combating Autism Act was signed over three years ago. Since that time it has become even more clear that vaccines are not a primary cause of autism. The two major theories that the MMR vaccine or that Thimerosal cause autism have been shown to have very little scientific basis. Both were discussed at length in the Autism Omnibus Proceedings. The MMR causation theory has already been rejected as “not even close” and upheld by three separate appellate judges. The thimerosal theory has not been decided as yet, but the science was no better than that used for MMR. I expect that the Thimerosal theory will suffer the same fate as the MMR theory.

The number of people applying to the “vaccine court” for compensation for autism peaked six years ago. 2,437 families petitioned the Court for hearings alleging autism as a vaccine injury in 2003. In 2008 that number shrank to 253. The vaccines-cause-autism theory is clearly losing ground even within the autism community.

That doesn’t mean that the vaccines-cause-autism organizations are giving up. Quite the opposite. They are ratcheting up the pressure, focusing on individuals.

I actually find it hard to consider the vaccine/autism groups to be separate entities. These groups are SafeMinds, Talk About Curing Autism (TACA), the Autism Research Institute (ARI), Generation Rescue, and The National Autism Association (NAA). They do vary in their approaches to some topics. For example, TACA and Generation Rescue put more resources into direct contact with families than, say, SafeMinds. But, when it comes to lobbying about vaccines, they are pretty much a single organization, sharing a significant amount of key personnel.

These organizations are represented on the IACC by Lyn Redwood of SafeMinds. The grassroots activist efforts of the organizations is coordinated through their blog, the Age of Autism. It is a particularly clever and effective construct: the advocacy organizations can claim to be separate from the particularly nasty rhetoric of their own blog. As a separate entity, the finances of the Age of Autism blog will not be made public.

That all said, the Age of Autism should be considered the voice of these organizations and the actions coordinated on that blog are the actions of its parent organizations.

I can understand why groups such as SafeMinds or Generation Rescue would want to be able to claim some distance from the Age of Autism (AoA). AoA is used to coordinate serious intimidation efforts.

The recent departure of Dr. Story Landis from the IACC was engineered by AoA. They found notes made during an IACC meeting and planned a surprise attack to coincide with an IACC meeting. As an ironic twist, AoA got someone sympathetic to their cause to resign the IACC.

AoA has also targeted IACC member Yvette M. Janvier, M.D., twisting her words “the idea that autistic kids are sick offends me!” into “I am offended by sick autistic kids”.

AoA launched an attack on IACC coordinator Joyce Chung. This coincided with a week long IACC meeting to iron out the Strategic Plan. Her “crime”? She is married to Richard Grinker, author of Unstrange Minds. Dr. Grinker is public in his belief that there has not been an epidemic of vaccine-induced autism, a belief held by the vast majority of the autism research community. What does Dr. Chung have to say publicly on the subject? Nothing as far as I can see. What actions did she take that warranted an attack? None.

The good people at AoA have attempted legal intimidation as well. They got a Congressional Oversight Committee to investigate the IACC. When that didn’t pan out, they sought “legal advice” on alleged FACA violations. No word on what, if anything, became of that effort either. The Age of Autism isn’t shy about touting their attacks. It would seem safe to assume this one failed.

AoA has recently set their sights on the IACC’s chair, Dr. Tom Insel. I am sure this came as no surprise to Dr. Insel. Earlier this year he called for a re-vote on a proposal to add a vaccine study to the IACC’s Strategic Plan, and later made public statements in a congressional hearing that there wasn’t enough data to warrant a vaccine-autism study.

Other than being bold enough to discuss the view held by the vast majority of autism researchers, what is Dr. Insel’s greatest crime? His brother invented a vaccine. Yes, Dr. Richard Insel helped develop a vaccine for Haemophilus influenza B (Hib). This vaccine has been quite effective in reducing Hib infections. But, any contact with vaccine research or company is considered a fatal conflict of interest to the bloggers at the Age of Autism.

I’m sure that there is more going on behind the scenes.

If this were all to the story, it would be sad but uninteresting. Unfortunately, there is fallout from all of this intimidation. I already know that good researchers have avoided autism as a subject in order to avoid the groups represented by the Age of Autism. I suspect that good people are avoiding participating in the IACC meetings as well. But, the most direct fallout is that the IACC members are unable to speak their minds on the subject of vaccines. Beyond vaccines, they have to live in fear of any possible infraction of the rules or any statement that could be misinterpreted will be used against them. A prime example was given above where “the idea that autistic kids are sick offends me!” was warped into “I am offended by sick autistic kids”.

If this were some minor, make-work bureaucratic committee with no real impact I wouldn’t care. But this is the group that sets the plan for the largest autism research in the world. Not only is this sort of intimidation a crime in general, it is hurting my kid’s chances at a better life.

It is time for the intimidation to stop. The Age of Autism bloggers should learn a lesson from their recent, childish attack. Acting out without thinking can hurt even them. This event is being noticed. Both the journals Nature and Science have blog posts about this recent debacle. The Simons Foundation interviewed the director of the NIH on the subject.

I’ll say it again: it is time for the intimidation to stop.

Dr. Landis resigns from IACC: Vaccine-autism lobby shot themselves in the foot

19 Oct

Here’s a big “oops” moment for the good people at the Age of Autism blog and the organizations it represents.

They may have forced the resignation of someone sympathetic to their cause.

Here’s the back story. Dr. Story Landis is one of the government’s representatives on the Interagency Autism Coordinating Committee (IACC). She wrote some notes during a past meeting. After the meeting, someone found the notes and passed them to a blogger at the Age of Autism, who published one of them with a scathing blog post calling for her resignation.

Dr. Landis has resigned.

Note that the blog post was timed to coincide with last week’s IACC meeting. Also note that no one appears to have contacted Dr. Landis prior to posting the blog piece. For that matter, no one appears to have contacted her prior to her resignation.

Here’s what the note read:

I wonder if Lyn Redwood is pushing autism as multisystem disorder to feed into vaccine injury?

Would be a good justification for looking at vaccine injured kids who have gotten awards.

Mr. Kirby has blogged the incident. He includes an email he received from Dr. Landis, quoted below:

I can understand people’s reaction seeing just the note that I wrote during the recent IACC scientific workshop. I felt it important to apologize immediately to the autism community, which I did at yesterday’s IACC, subcommittee meeting. Let me repeat my apology for the record: “I have seen some thoughts that I jotted down during the recent IACC meeting posted on Katie Wright’s blog. I am very sorry that my personal reflections during the meeting have been taken out of context and have been interpreted by the community in ways that I would never intend. As a responsible and committed member of the IACC I am sorry for the upset that it has caused and the concerns that it has raised.”

The other part of my note addressed the fact that it is important for autism researchers to study the children who have been most profoundly affected by their response to vaccines. That in no way mitigates my sincere apology to the families who interpreted my note to be uncaring and disrespectful.

Repeated for emphasis: “The other part of my note addressed the fact that it is important for autism researchers to study the children who have been most profoundly affected by their response to vaccines. ”

If things are as they appear, the Age of Autism bloggers may have just gotten someone sympathetic to their goals to resign from the IACC.

Mr. Kirby’s comment about this explanation set of an irony meter:

A lot of people I have spoken with were also surprised by the statement, given the general hostility toward vaccine research they have encountered at the IACC.

Hostility? When it comes to the IACC there is a lot of hostility, I will grant that. But it flows from certain autism groups and the Age of Autism blog in particular towards the IACC. Mr. Kirby has joined his fellow Age of Autism bloggers in the intense hostility shown towards the IACC and its chair, Dr. Thomas Insel. Watch the recent interview that Mr. Kirby did with Sharyl Attkisson if you would like to confirm this.

I realize that many people are upset that the IACC is not funding vaccine research (even though I am not one of them). But, “hostility”? No. The IACC and Dr. Insel have remained respectful on the subject.

Let’s recap many of the mistakes made in this story

1) Dr. Landis should have been more careful with her private questions and not left the notes behind

2) Whoever did the “dumpster dive” embarrassed the autism community. I’m sure it would have been considered justified if they hadn’t screwed up and forced the resignation of someone sympathetic to their cause. But that leads us to:

3) The Age of Autism decided that a surprise attack was more important that gathering all the facts and published the blog piece without comment from Dr. Landis.

4) Bloggers, including myself, didn’t step forward to defend Dr. Landis’ right to pose reasonable questions.

5) Dr. Landis didn’t defend her own right to pose reasonable questions.

6) Dr. Landis resigned. Yes, I consider that a mistake.

7) Apparently Dr. Insel accepted her resignation. I consider that a mistake as well.

Let’s take a look again at the question Dr. Landis posed that caused such a stir: “I wonder if Lyn Redwood is pushing autism as multisystem disorder to feed into vaccine injury?”

Why is this such an outlandish question? Ms. Redwood represents SafeMinds, an organization which promotes the idea that vaccines caused an epidemic of autism. In their web page on Ms. Redwood’s activities on the IACC, SafeMinds made it extremely clear that autism as vaccine injury was the number one priority for the meeting where Dr. Landis wrote her note. It was perfectly reasonable for Dr. Landis to wonder how the idea of multi-system disorder ties into the idea of autism as vaccine injury. It could have been phrased better. Better yet, it could have been phrased better and posed as a question directly to Lyn Redwood. Unfortunately, the very same hostility that the bloggers Lyn Redwood’s organization sponsors make that nearly impossible. The same politicization of any statement about vaccines and autism that her organziation and Mr. Kirby, their publicist, make it nearly impossible to have that discussion.

Yes, there were people who thought the Age of Autism blog post was a good idea. Many probably still do. The same people are likely writing this post off as gloating at their mistake. This isn’t gloating. This is disgust. This is anger that a bunch of people have ratcheted up the hostility towards the IACC to a level that impedes discussion and progress, and then have the gall to blame the IACC for the hostility.

The fact that you guys shot yourselves in the foot in the process only serves to prove my point.

Paul Offit explains the money side of the rotavirus vaccine he worked on

14 Sep

Misinformationists love a vacuum. Unfortunately, Dr. Paul Offit left them a big opening by not disclosing how much his hospital, the Childrens Hospital of Philadelphia (CHOP), paid him as his share of the royalties from the sale of the rights to his rotavirus vaccine invention.

Dr. Offit invented a rotavirus vaccine, together with CHOP faculty members Dr. Stanley Plotkin and Dr. Fred Clark. This vaccine was commercialized as RotaTeq. CHOP is reported to have been paid $182M, with a net income of $153M.

From that, Doctors Offit, Plotkin and Clark would have been paid an inventor’s share.

In my opinion, it was sufficient for Dr. Offit to acknowledge that it was a significant amount of money.

Mr. Mark Blaxill and Mr. Dan Olmsted of the Age of Autism blog felt differently. They felt it necessary to put an number to Dr. Offit’s royalty payment from CHOP.

Dr. Offit and CHOP declined to respond to their request for information on this subject.

As a point of interest: CHOP didn’t respond to my request, made at that time, either.

In this information vacuum, Misters Blaxill and Olmsted used public information from a scattering of sources to estimate that Dr. Offit was payed between $29M and $55M.

They were off by about a factor of 10.

As noted in a recent post, I showed how one could easily make an accurate estimate of the royalty payment from that sale, and it was about $6M. Misters Olmsted and Blaxill, who spent a considerable amount of time scouring information from the University of Arkansas to the University of California missed the easily obtainable public information on the CHOP website.

Before I wrote that piece, I contacted Misters Blaxill and Olmsted with the correct information, even including a statement that Dr. Offit had acknowledged that the estimate I came up with was accurate. I was informed that a public statement was necessary by Dr. Offit.

I found this odd because on Sept. 9, a statement by Dr. Offit was reported.

This was originally run on the blog “Countering the Age of Autism” as Paul Offit explains the money side of the rotavirus vaccine he worked on, by David N. Brown, frequent poster to this site and owner of the Evil Possum website.

In an email correspondence with David Brown August 18, 2009, Dr. Paul Offit writes:

David,

CHOP sold its patent for $182 million. This information was made publicly available and was published in the Philadelphia Inquirer at the time. The inventors, Fred Clark, Stan Plotkin, and me split 10 percent of that three ways. This means that we each received about $6 million. It was a ridiculous amont of money and certainly far more than any of us needs, but it is also a far cry from what has been claimed.

But the part that hurts the most is the continued claim that we did this for the money. I don’t know any scientist who does it for the money (you certainly don’t make much in salary). You do it because it’s fun and because you think you can contribute. And the reward for creating a vaccine was also never financial. The reward was watching this vaccine dramatically reduce the incidence of rotavirus hospitalizations in the US and now getting to watch the vaccine enter the developing world in countries like Mali, Bangladesh, Vietnam, Ghana, and Nicaragua. That’s why we did it.

It hurts to watch people slander me the way they do. They just don’t know me. Or any of us that work so hard to get a technology like the rotavirus vaccine to the countries where it will save the most lives.

Paul

Reprinted with permission from David Brown and Dr. Paul Offit.

Paul Offit responds to the press release by NAA (and carried by AoA)

14 Sep

The National Autism Association put out a press release last week that was an amazing piece of work. Just not in a good way.

I was not the first to comment on it. Below is a post from the Countering Age of Autism blog that I asked to rerun here.

So, with permission:

On the 8th, NAA sent out a press release rehashing the same misinformation that AoA habitually runs (it’s almost like they got it right from them and Wakefield. They probably did). AoA picked it up and ran with it, and I spent a fair portion of my day trying to figure out who NAA was as well as mount an adequate rebuttal. I don’t know that it’s an adequate rebuttal, but it is what I can do.

I appreciate the researchers who work tirelessly in labs trying to figure out ways to save lives. I admire the diligence and commitment it takes to work for over two decades on one vaccine because you believe in it that strongly. Now, I don’t reach the level of adoring fan like Wakefield’s groupies apparently do (if you saw the Friday morning piece on the Today show before the Sunday Dateline, you know what I’m talking about), but I’m not a groupie kind of gal. Maybe those women are. My point is, this isn’t blind adoration speaking. I’ve read Dr. Offit’s books, all of them, because I wanted to know more about vaccines (read those first), and I read Autism’s False Prophets, as well, because I wanted to see what he’d found out.

For most of my son’s (who will be 20 this year) life, I have been focused on HIM. I homeschooled him for ten years, I spent the years before that often all day in the school system with him. He was the center of my world as I worked with him to help him. I didn’t join support groups; I didn’t talk to a lot of parents with autistic children. My husband and I labored alone for the most part. I wasn’t desperate; I was determined. I read everything I could on autism, mostly the science because I am so not into the woo. If it was woo, I stayed away from it. Until March of this year when I realized how much was out there.

Why did I start looking, now, after all these years? My daughters are on the spectrum as well. They are 12 and 14 years younger than their brother and it seemed like I needed to see what was out there. Especially since I have students who ask about vaccines and autism. I delved deep into the science of it, and then into the woo. Not all the woo, mostly the easy access free stuff at Huff and AoA and like autism organizations. Gods, but there is a frakload of woo out there. And really nasty behavior on the part of the woo-ites. Like the threats that Dr. Offit receives. Not acceptable behavior period.

So, when this stuff hit, I emailed Dr Offit to ask if he’d like to rebut this latest round of trash talk. And, thankfully, he did.

And here is the email that Countering Age of Autism posted:

Run with the permission of Dr. Offit:

Dear Kim,

Thanks for the support. At some point those who believe that vaccines cause autism will realize that I’m not their problem. The data are their problem. But I guess, absent supportive data, it’s easier and more satifying to attack me (I would also like to point out that I didn’t do any of these studies that exonerated vaccines as a cause of autism; I just explain them to the media).

Although it might sound crazy, I take some solace in the fact that those who oppose vaccines continue to get the facts wrong. It’s somewhat reassuring to know that they hate me for the wrong reasons. And the Huffington Post blog by James Moore, a well-respected journalist, is completely off the mark. I would have expected more.

1) I am not a paid consultant to Merck.

2) I never “voted myself rich” while I was on the ACIP. RotaTeq came up for a vote in 2006, three years after I was no longer a voting member. And even if I were a member, I wouldn’t have been allowed to vote. Further, I consistently declared my potential conflict. Although some people may find this hard to believe, I’m actually proud to be the co-inventor of the rotavirus vaccine and was more than happy to declare this at the beginning of every meeting.

3) What (the hell) does being the co-inventor of a vaccine have to do with standing up for the science of vaccine safety. It certainly doesn’t affect my financial position one way or the other. I do it because I think that children are getting hurt by all of this (the same reason I went into pediatrics and worked on vaccines). The logic of the anti-vaccine folks escapes me here. Let me see if I’ve got this right; I invent a vaccine that can save as many as 2,000 lives a day so that I can make money so that I can lie about vaccine safety so I can hurt children.

4) I do not receive salary support or laboratory support from the Hilleman endowed chair. Five percent of that endowment does go to support members of our division, but not me.

5) I never received one penny of the $350,000 claimed in the Burton report. All of that money went to Dr. Fred Clark. I was totally supported by grants to NIH.

I really do appreciate your support, Kim. Few seem to be willing to stand up for me. And it does occasionally get me down. But mostly it just makes me angrier and more determined to hang in there.

Best,

Paul

How Much Longer?

9 Sep

The National Autism Association has a campaign afoot to raise awareness with the catch-phrase “how much longer”.

As in these quotes from their campaign:

“FDA, HOW MUCH LONGER WILL YOU APPROVE VACCINES THAT AREN’T NEARLY AS SAFE AS THEY COULD BE?”

Or

“HOW MUCH LONGER, NIH, before you adequately fund environmental research?”

I have a question:

How much longer, NAA, before you act like a reasonable member of the autism communities? (substitute Generation Rescue or SafeMinds for NAA, they are all basically the same group).

The NAA quote about NIH shows a lot about the NAA’s intent. “Adequately fund environmental research”. A lot of money is going to environmental research for autism causation at NIH. A lot. But, until it includes vaccine-causation, no amount is going to be considered “adequate” to the NAA.

NIH and most of the medical community doesn’t think that there is a good reason to do vaccine-causation research. But that isn’t the reason why groups like NIH don’t fund research. Let’s face it, NIH have an entire center devoted to spending on money that most of the medical community considers a waste.

The NAA would like to place the blame on everyone. Everyone else, that is. It’s a vast conspiracy, funded by Pharma dollars, with everyone afraid to admit the truth about the damage they caused. Do I have that right, NAA?

The real problem, NAA/Safe-Minds/Generation Rescue, is that you are your own worst enemy.

Ask yourselves a very simple question: if NIH is willing to spend money on projects with little hope of success, if NIH is willing to spend money on questions where the general expectation is that the answer will be no (remember that chelation study?), if they are willing to do that, why not spend money on a vaccine-causation project?

To answer that, you have to ask, what is the cost of a vaccine-causation project?

The real cost isn’t calculated in dollars. The real cost in is the damage to public health that such a study would bring. Yes, funding a do-vaccines-cause-autism project would hurt public health.

How can I say that? Because you guys at NAA (and sister orgs) would use the fact that NIH has funded such a project to attack vaccines. The entire time from the approval of the funds to the time the study results were published, you would be claiming “See, the government thinks vaccines are causing the autism epidemic”. What happens when the project is done? If the research doesn’t agree with your position, you will reject it. That is your clear track record.

Besides, what quality independent researcher would take on such a project? Anyone able to do such a study is is likely smart enough to realize that he/she would be hounded for the rest of his/her life if he/she doesn’t publish results that agree with your preset expectations.

You guys are stuck in the past. A past where you could say “vaccines caused an autism epidemic” and people listened. It’s time to listen to the people who support you. Really listen. Listen and realize that just because someone is supporting you doesn’t mean that he/she supports everything you say. Case in point: Dr. Bernadine Healy. Does she say there has been an epidemic of vaccine-induced autism? Does she say the epidemiology is junk? No. She says there may be small groups. Groups too small to be detected in the epidemiology that’s been done. That’s really, really small, by the way.

Get it? Even your supporters say you haven’t proven anything and that at most you represent a small fraction of the autistic population. You’ve been able to “wag the dog” for a long time, but that time is over. It’s time to realize that at most you would be a small part of the autism communities. It’s time to realize that the autism communities are part of a larger disability community.

If this seems too complicated, here are a few simple steps you can take to rebuild your credibility:

1) admit that thimerosal did not cause an “autism epidemic”
2) admit that MMR did not cause an “autism epidemic”
3) stop discounting all science that disagrees with you.
4) stop smearing people who disagree with you.
5) stop creating misleading faux research.
6) stop trying to discredit fine American institutions.
7) stop denying the existence of a large number of adult autistics.

Oh there’s more. A lot more.

As I said above, NIH is willing to fund research that constituents want even when it is very likely to be fruitless. But you have made it expensive to perform from a public health perspective and won’t accept any answer except the one you want.

How much longer until you get vaccine-autism research? You tell us. You are the ones in the way. Your “how much longer” campaign probably just set you back at least a year.

You probably see this as harsh. In reality it is probably the best advice you have been given all day.

It’s time for David Kirby to disavow the autism epidemic

3 Aug

The idea that mercury caused an epidemic of autism is both wrong and very damaging to the autism communities. Many contributed to this damaging notion., but David Kirby without a doubt carries a good quantity of the blame for his book “Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy” and efforts since.

Mr. Kirby often tries to hide behind the notion that he is just “trying to spark a national debate”. Sorry, but that is nonsense. He actively promotes the idea that vaccines cause autism. It is unclear to this reader whether Mr. Kirby is currently being paid for his efforts. In the past he cherry picked information and packaged it in seemingly self-consistent packages to convince people that an epidemic did occur.

He has now moved to a tag-team approach for presentations to the US congress. He presents information to support the idea that vaccines could cause autism. He then let’s Mr. Mark Blaxill take over to promote the epidemic with the old, tired arguments.

It’s like Mr. Kirby still wants to be able to say, “I never really said there was an epidemic. I was just sparking a discussion.” It’s Mark Blaxill that is actually calling it an epidemic.

Nonsense.

This has been bothering me for some time. It came up again strong when Mr. Kirby commented on a blog piece. David Kirby doesn’t generally participate in the online discussions-even to the point of not answering comments on his own blog pieces. He broke that tradition recently in a blog piece on the Mother Jones website: Breaking: Vaccines still don’t cause autism

My response to Mr. Kirby incorporated much of what I was considering for a future blog post. So, rather than paraphrase what I wrote, here it is in full:

Mr. Kirby,

I see your usual arguments above. I see, also, the usual gaps in your discussion. Over the years, you have gone from promoting the “vaccines caused an epidemic of autism” to dancing around the subject of the false “epidemic”, neither stating that there was an epidemic, nor admitting your mistake. Could you comment somewhere, on the record: was there an “epidemic” of autism caused by mercury? You seem to leave that to your colleague, Mr. Blaxill, giving yourself some form of plausible deniability. It is irresponsible.

You rely heavily now on the NVAC recommendations. Why do you leave out so many comments by NVAC?

The NVAC is assured by the many epidemiological studies of the effects of mercury exposure done in a variety of populations, which have demonstrated that thimerosal in vaccines is not associated with autism spectrum disorders in the general population.

Are you prepared to agree with NVAC that the data are in and that there has been no epidemic of mercury caused autism? It would be the honest thing to do.

You rely heavily on the idea that mitochondrial disorders are related to autism. You pushed heavily on your blog the idea that mitochondrial disorders are caused by mercury, without substantiation. In fact, this idea is strongly rejected by the very experts you rely upon.

Further, you leave it implied that children with mitochondrial disorders and autism indicate a link to autism as a vaccine injury. This is clearly not the case.

Why do you leave out the fact that most children with mitochondrial disorders and autism do not show regression. Without regression, it is clear that vaccine injury is not causing autism in these individuals?

Why do you leave out the fact that in the one study of children with mitochondrial disorders and autism, it is clear that vaccines are not causal in the vast majority of cases, and could be questionable in the one case cited so far?

You cite that there could be a sizable population of autistics who have a mitochondrial dysfunction. Yet you leave out the public statements by one of the very doctors who supported the Hannah Poling case in vaccine court that any such injuries are rare. This from the few doctors who support the idea of mitochondrial disorder as a vaccine injury. Other specialists have stated that it is far to early to draw a conclusion that mitochondrial disorders caused by vaccination is even “rare”.

Why have you not removed your blog piece that was so erroneous that you were forced to rewrite it within a day, with an admission that you seriously erred? Isn’t that a form of dishonesty?

Are you prepared to join Rick Rollens, one of the strongest proponents of the vaccines-cause-autism notion, in stating that the idea that MMR causes autism has been tested and MMR is no longer suspect?

I will ask again, if you are going to cite NVAC, are you willing to join them and state that mercury did not cause an “epidemic” of autism?

Would you at least be willing to include quotes from NVAC that are, shall we say inconvenient, to the notion of a vaccine induced “epidemic” of autism? Quotes such as:

Vaccination almost certainly does not account for the recent rise in ASD diagnoses; however, public concern regarding vaccines and autism coupled with the prevalence and severity of ASD warrant additional study in well defined subpopulations.

This quote makes it clear that
a) NVAC does not support the idea of an autism “epidemic” caused by vaccines
b) NVAC is not calling for studies of vaccines and autism due to evidence presented so far, but, instead, by public concern.

Mr. Kirby, your half truths and misleading arguments cause great harm to the autism communities, as well as to public health. You personally are responsible for much of the public’s misconception that mercury caused an “epidemic” of autism. Don’t you agree that you personally should publicly refute your previous stance?

Being wishy-washy on the epidemic question and letting your colleague Mark Blaxill push the idea in your tag-team briefings is just dishonest. Either you still believe in the mercury-caused-epidemic (and you are wrong) or you should be clear that it was a mistake.

It was a mistake. Earn some respect. Admit it.

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