Its always a bit of a dilemma when writing an entry that doesn’t really touch on autism at all. But I have become convinced that the population beyond the autistic and autism community need to know that most of us within these communities do not support the know nothing anti-science, anti-medicine and most of all, anti-vaccine community that has a vocal minority place within our communities and that as such we owe it to our societies to vocally counter these idiots such as those at Age of Autism who spread lies and promote an age of ignorance.
I’ve heard it said by writers and readers of blogs like Age of Autism and sites like JABS that H1N1 is ‘no big deal’ and that the H1N1 vaccine is a dangerous and untested shot. Both of these things are untrue.
My partners youngest daughter (not autistic, although her eldest is) recently received an invitation to participate in the H1N1 vaccine testing which would involve three visits to the local hospital over a four week period. And over the 4 week period they would take two blood draws. This is for an ongoing safety and efficacy testing.
When the Age of Autism reported on a note written by Story Landis, they added a word that dramatically colored what was said. I am left wondering why would AoA make such an clearly detectable misquote? Read on and you will see what I mean.
Here’s a little screenshot of the Age of Autism blog post, if you don’t want to click through to their site:
Segment of post about Story Landis
I know this seems redundant, but here is what they quote Dr. Landis as saying:
“I wonder if Lyn Redwood is pushing autism as a multi-symptom disorder in order to feed into vaccine injury awards.”
Emphasis added by me.
Why add emphasis, you might ask? Because “awards” is not in what Dr. Landis wrote in that first line. Go ahead and check. Here’s the note, as downloaded from the of the Age of Autism blog.
“I wonder if Lyn Redwood is pushing autism as multisystem disorder to feed into vaccine injury?
It is the second line that mentions awards:
Would be a good justification for looking at vaccine injured kids who have gotten awards.
The insertion isn’t a simple mistake–it is made twice in the same blog post. Here is the second place the mistake was made:
How could Landis imply that families are “trying to make” autism into a total body disease in order “to feed into vaccine injury awards.”
Neither section in the “quotes” is accurate. “Trying to make” isn’t in what Dr. Landis wrote, and, as we have just seen, “feed into vaccine injury awards” isn’t either.
Without the word “awards” added the meaning that the Age of Autism blog post tries to convey, heck, the title of the blog post–that Dr. Landis was speculating that this was a “money making scheme”–is unsupported.
Let’s dive into this a bit deeper. David Kirby, blogger at the Age of Autism and at the Huffington post did a very strange thing. In his piece he gets the correct quote from the note, doesn’t mention the mistake made at the age of autism, but still pushes the Age of Autism interpretation:
To many parents, it seemed that Dr. Landis suspected Redwood of “pushing” the study of these multisystem problems merely to boost the number of autism cases filed in vaccine court (the Vaccine Injury Compensation Program), and to increase their chances for victory. Judging by the comments on Age of Autism, those parents were profoundly offended by the implications of that interpretation.
I’m curious as to how Mr. Kirby came to the conclusion that Dr. Landis’ note was “merely to boost the number of autism cases filed in vaccine court” and “to increase their chances for victory”. Dr. Landis didn’t mention the court, the chances of victory…or even “awards” in the context that would support Mr. Kirby’s interpretation.
I’d be curious as to whether Mr. Kirby pointed out the mistakes to the Age of Autism blogger in question.
A casual observer might find it odd how Mr. Kirby corrected the quote and yet persisted in pushing (yes, I’ll use the term pushing) the interpretation based on the misquote. The same casual observer would find it especially odd, since Mr. Kirby was the one to publicly disclose Dr. Landis’ explanation of her comment:
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.
“The other part of my note” being “Would be a good justification for looking at vaccine injured kids who have gotten awards.”
If you can look at the quote fresh, consider this interpretation–the first sentence, “I wonder if Lyn Redwood is pushing autism as multisystem disorder to feed into vaccine injury?” is discussing the if autism as a multisystem disorder would feed into the *idea* of autism as a vaccine injury. The assertion that her comment referred to vaccine injury “awards” is at best speculation and, at worst, a pretty clear misquote. I could speculate on the motives of the Age of Autism blogger, but haven’t we just seen how dangerous it is to speculate on motives with little information?
note: I made some small edits for clarity shortly after publishing this.
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)
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 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.
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.
That’s the bottom line of the story, in case you don’t want to plow through this rather messy story.
Two stories out today are discussing how the 1% autism prevalence story has been handled by the government, the AAP and the media. An emphasis is being placed on how the information embargo was handled and, possibly, mishandled.
Someone at the CDC leaked information about these studies to Lee Grossman. Whether Mr. Grossman approached the CDC employee or the other way around is unknown. There also isn’t any information on whether Mr. Grossman was supposed to keep this information confidential.
What is known is that Mr. Grossman publicly discussed this information at an Autism Society of America meeting in July.
Mr. Grossman also discussed this information with Mr. Kirby. How exactly that exchange came about we don’t know. Mr. Kirby has given a version of the story on his blog, but he has also shown himself willing to lie in order to protect a source.
Mr. Kirby blogged information about the two studies on August 11th. He did not name pediatrics as the journal, but he did note that the study would involve the NCHS data.
The pediatrics study was scheduled to come out this week (Monday, October 5). As is usual, the American Academy of Pediatrics released information to the press the week prior. These releases are made so that the press can prepare well researched stories to be published coincident with the paper. The press are not allowed to disscuss the story until the “embargo” was lifted at 12:01 eastern time, Monday Oct. 5.
The embargo system is actually a quite good one. This insures that the press has the time to put together well researched, thoughtful stories on a given topic. The writer who spends a lot of time on a story isn’t penalized by some guy slapping together a quick story to make a scoop. It’s a win-win: the press get to write better stories, and groups like the AAP get good press coverage.
But what do you do when someone has already leaked part of the story? To make it even more complicated, there were really two stories here: the Pediatrics paper published on Monday and the MMWR that isn’t published yet.
Understanding the high level of interest in the story, the U.S. Government decided to hold a conference call with the press. They planned their own data–the MMWR. In this way, journalists covering the Pediatrics story could include the MMWR without having to rely on the bits and pieces leaked by Mr. Kirby.
This call was scheduled for last Friday (Oct. 2) at 3pm.
The information from this call was embargoed. From the NPR story:
“Both the CDC overview and the HRSA study [in Pediatrics] were embargoed, because the subject nature was obviously so similar,” a spokesman for the National Institute of Mental Health told Covering Health. “It just wouldn’t be appropriate to not have the CDC following the same set of guidelines as the HRSA study as it relates to the embargo.”
This call was at 3pm.
The U.S. Government decided early Friday morning to hold a second conference call for autism advocacy organizations. This call was scheduled for 2pm, and did not include embargoed information. They didn’t discuss the details of the papers, just the new prevalence numbers (about 1%).
CDC spokeswoman Artealia Gilliard told AHCJ on Tuesday afternoon that everything in the 3 p.m. press call was under embargo, while nothing that would have been covered by that embargo was mentioned in the earlier call with the autism community. In particular, Gilliard said, no specific prevalence rate numbers were given out on the call.
“We basically said ‘On Monday, two studies will come out. They will update the prevalence estimate we previously had.’ … It didn’t actually have any of the information that was embargoed.”
Gilliard, who was on both calls, specified further: “I know they didn’t put out numbers in the advocacy call. I know we didn’t say 1 in 100. What we’ve been saying is ‘approximately 1 percent of children.’”
So, we have two conference calls, discussing much the same information (about 1% prevalence). One was embargoed and the other was not.
Washington loves to dump its bad news on a Friday afternoon, and on October 2 it confirmed that 1 percent of American children (and by extension, perhaps 1-in-58 boys) has an autism spectrum disorder.
It is possible that Mr. Kirby didn’t know that the Pediatrics study was to be published on Monday. It is possible that he didn’t know about the second, embargoed conference call.
Possible, but very unlikely.
If he knew (and I believe he did), his introduction is highly irresponsible. It fans the flames of the idea that the government tries to bury autism information. No surprises there, as Mr. Kirby has made a career out of fanning those flames.
Mr. Kirby further fans the flames by indicating that the 2pm call was short:
There was no alarm, and little time for questions from the community that was invited to “visit.” After about 15 minutes, questioning was cut off, and the call abruptly ended. I tried three times to ask a question (via a telephone switching system) and so did many other people on the call, which lasted a total of 39 minutes.
As we now know, the government had to prepare for the 3pm call. Perhaps Mr. Kirby didn’t know about that call. Again, that seems highly unlikely.
Mr. Kirby complains of not being able to pose his question. You can go read it if you want, I am not copying it here. The question, in classic Kirby style, is really a lecture putting out the current talking points of the vaccines-cause-autism groups.
Lisa Jo Rudy at autism.about.com read the Kirby and Olmsted pieces (she mentioned this in her piece) and decided to blog the story herself. Unfortunately, she was a bit confused by what was embargoed and what was not–she discussed the Pediatrics paper (which was embargoed). This was reported to the AAP, who contacted Ms. Rudy and Mr. Rudy pulled the piece. The AAP decided that the embargo breach wasn’t so big as to pull the embargo entirely. In other words, they went ahead and kept the rest of the press to the Monday morning embargo date.
The Age of Autism blog is still trying to fan the flames, pushing the idea that the mainstream media doesn’t want to cover this story. Mark Blaxill posted a piece today, Autism News: Pathetic Non Coverage, discussing how his home-town newspaper (The Boston Globe) didn’t cover the story when the embargo lifted on Monday. He states that “In the meantime, on Tuesday the Globe posted a link to an abbreviated form of the Associated Press story. A day late and a dollar short.”
I don’t profess to know what methods Mr. Blaxill used when he couldn’t unearth the story on the globe.com webiste. I know that I used “autism” as the search term and quickly found this story, which came out Monday, October 5. There is also the abbreviated AP story that the Globe put out on Tuesday, which Mr. Blaxill references.
What can we say about the whole debacle? It is a big mess. It is a big mess that started when someone at the CDC told Lee Grossman of the Autsim Society of America some confidential information. That person at the CDC screwed up.
Isn’t that just a bit sad? Trusting a prominent representative of a major autism organization has been shown, in this case, to be a mistake.
I won’t say that Mr. Grossman made a mistake by talking to David Kirby. An error in judgment, yes. Mistake, no. Mr. Kirby’s track record of presenting any data in a very biased mode to promote vaccines-causing-autism is quite well established.
I didn’t see any mainstream press coverage that included any of Mr. Kirby’s talking points. He was able to get a prominent spot in the google news searches on autism with his Huffington Post piece.
The main fallout seems to be (a) the CDC will probably clamp down on giving out information and (b) the press has an impression that autism advocates are irresponsible with information.
The first official sounding of the death knell for the ‘hidden horde’ hypothesis of autism (it must be vaccines because there aren’t 1 in 160/150/100 adult autistics) was recently sounded (as reported by Anthony) when an NHS study announced that the rate of autism amongst adults was 1% – exactly the same as for kids.
Fully aware of the implications for their beloved anti-vaccine hypothesis John Stone and Polly Tommey write/star in a recent post on that repository of all things bullshitty – Age of Autism.
NHS Autism Report suggests the increase in autism in recent years was all down to an oversight
Says John Stone, trying to reassure his readership theres still life in the terminal old dog of the hidden horde hypothesis. And why does he say this?
“Are we really able to believe all that we hear on such important subjects, or is there a stronger hand with adifferent agenda behind it?”
Ahhhh, of course! When a piece of science/news story doesn’t support your point of view then it _must_ be the work of….oh, whoever – Illuminati? Out of control government? GAVI? Take your pick.
But surely Stone and Tommey have better reasons than that…? Don’t they?
Well no, not really. They didn’t like the perfectly valid Autism Diagnostic Observation Schedule that was used. Although they don’t refer to it by name, instead they cherry pick questions to try and demean the validity of the test.
The report was based on adults living in households throughout England and the assessments were done in two stages. Stage One asked individuals to rate how well they agreed with 20 statements about their likes, dislikes and abilities – such as whether they preferred going to ‘libraries’ or ‘parties’.
…If the full range of ability had been included in the NHS report, alongside the verbally fluent, high functioning adults living at home, there would surely be far more than 1 in 100. So, either there are more adults than children with an ASD and autism is on the decline(!?) or there is something wrong with the report.
A quick glance at many mainstream autism orgs claim on prevalence would show Stone that yes, there are more autistic adults than children. This report could indeed be interpreted to show a decline in autism.
People will claim that thats counter intuitive but it really isn’t. As autism has become more recognised, better diagnosed and there are more centers worldwide for its early detection, child numbers have not risen but have become more apparent. This is true across the whole ‘spectrum’.
Taking the NAS numbers on prevalence They say that at a rate of 1 in 100 children gives a total of around 133,500 kids with an ASD. This leaves 366,500 adults. A rate of 0.8%.
So the estimate prior to the new report was 0.2% out. But Stone was right, there are now (and always were) more ASD adults than kids. Thats because there are more adults in the general population than kids. In terms of whether the _rate_ of autism has decreased there’s no research to compare this to but an estimate of 0.8% is pretty damn close to 1%. In real terms the NAS were only out by 733 adults. So I would say that this report reflects reality – with no doubt regional variance and other factors, the adult rate is (and always was) around 1%.
But the stoopid continues apace:
One thing is clear, however, the report has no relevance to children withautism like my son Billy and the many thousands like him.
Quoth Polly Toomey who somehow missed the point that this was a study of adults and thus was never going to have much relevance to her children.
We’re then treated to the science of Carol ‘try me shithead‘ Stott who personally received over £100,000 of legal aid money to prop up the dead MMR hypothesis. She claims (after further digs at ADOS) that a ‘further detailed critique’ will be appearing in that robust science journal AutismFile….owned and operated by one Polly Tommey.
So there we have it. This new study, which whilst far from 100% perfect is also far from the dead dog portrayed by the purveyors of science at The Autism File and Age of Autism. They think theres a conspiracy to ‘big it up’ and refuse to see the statistical truth. ASD hasn’t ever been in epidemic, theres been a stable rate for a long time. These dealers in anti-vaccinationism will just have to deal with that.
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.
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.
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.
The press release has the header: “Doctor Who Made Millions Off MMR Manufacturer Does Not Tell Public of His Financial Relationship during NBC Dateline Broadcast”
The NAA state further,
Dr. Paul Offit of Children’s Hospital of Philadelphia (CHOP), who was interviewed for a Dateline NBC television special, failed to tell millions of viewers that while he was promoting MMR as safe he had also made tens of millions of dollars from selling another vaccine patent to Merck, which is the manufacturer of MMR.
Let’s take a look at what was actually said, shall we?
Matt Lauer states (about 1:45 into the video clip), “Dr. Offit is a target. Not just for supporting vaccine safety, but because he himself made millions of dollars for inventing a vaccine.”
Quite frankly, the NAA is lying. Matt Lauer knew that Dr. Offit invented a vaccine and made money from his vaccine and Matt Lauer informed his audience of this. My guess if pressed the NAA will likely hide behind the Merck connection. Yeah. Like Matt Lauer and his producer didn’t know that RotaTeq is sold by Merck. (if so, that Merck logo on the RotaTeq box should have been a big clue, don’t you think?)
A minor point: Dr. Offit did not sell a vaccine patent to Merck. He assigned the rights to his invention the Children’s Hospital of Philadelphia (CHOP), a standard arrangement for an academic or industry employee. CHOP then applied for and was granted patents. CHOP (not Dr. Offit) licensed the patent to Merck, and then sold the license rights to a third party for a lump sum. Out of that sum, CHOP payed Dr. Offit, Dr. Plotkin and Dr. Clark.
The NAA press release further states:
According to CHOP documents, Offit’s share of a royalty sale for the Rotateq vaccine to Merck is a minimum of $29 million and may approach $50 million.
This is wrong. This is wrong on two counts. First, there are no CHOP documents which state that Dr. Offit’s share of the sale of the patent rights for $29 to $50M. There can’t be documents that say this because Dr. Offit’s share was about 1/10 of this amount.
How did the NAA get such incorrect information? There is a blog post, written by Dan Olmsted and Mark Blaxill which estimates this based on information they gleaned from the CHOP website. Their misinformation has been spread far since that post.
The only problem is, Dan Olmsted and Mark Blaxill were wrong. They made some big (and easily avoided) mistakes.
First mistake is that they used the incorrect Patent and Intellectual Property Policy in their calculation. That agreement wasn’t in effect when Dr. Offit and his co-inventors invented what became RotaTeq. Even Misters Blaxill and Olmsted acknowledged this in their post.
payment to inventors was based on gross income, with 50 percent distribution on the first $250,000, 30 percent on the next $250,000, 15 percent on the next $4.5 million and 10 percent on the remainder.
The bulk of the payout was 10% of net income. Not 30% as Misters Blaxill and Olmsted assumed.
The second mistake is that Misters Olmsted and Blaxill neglected the fact that Dr. Offit shared the CHOP payment with his co-inventors, Dr. Stanley Plotkin and Dr. Fred Clark.
As part of its distinguished legacy of developing vaccines to improve the lives of children, Children’s Hospital investigators Paul Offit, M.D., chief, Division of Infectious Diseases; H Fred Clark, D.V.M., Ph.D.; Stanley Plotkin, M.D.; and The Wistar Institute developed RotaTeq®, the oral rotavirus vaccine that was licensed and further developed by Merck & Co. Inc.
Dr. Plotkin is the former chief of infectious diseases at CHOP, and Dr. Clark was a research professor of Pediatrics at CHOP. Both easily confirmed through the CHOP website.
It is unequivocal that CHOP considered Dr. Clark and Dr. Plotkin to be a part of the CHOP team. The Intellectual property policy (and all standard IP policies) divide the inventors’ share amongst all inventors.
Sorry to go into such detail, but I can not figure out why Misters Blaxill and Olmsted have not corrected their mistake. One commenter to their blog pointed out that Doctors Clark and Plotkin were CHOP faculty, only to have Mr. Blaxill respond that “…Offit would have received the entirety of the CHOP inventor’s share”. I’d be interested what Mr. Blaxill based that statement upon.
CHOP is reported to have sold their rights to RotaTeq for $182M. Using the correct information, this leads to an estimated payout of about $6M. (Note, Mr. Blaxill and Mr. Olmsted report that the net income to CHOP was $153M. This would lead to about $5M payment for each inventor).
Using the correct CHOP policy, one can calculate (based on $182M):
Inventor share
50% of first $250k is $125,000
30% of the next $250k is $75,000
15% of the next $4.5M is is $675,000
10% of the remainder ($176,750,000) is $17,675,000
Total inventor share $18,550,000
This is split amongst the three inventors, leading to:
each inventor getting $6,183,333
I have confirmed that this is is an accurate estimate with Dr. Offit.
I post this calculation not as an estimate, but as a demonstration that the accurate amount could have been calculated by Misters Olmsted and Blaxill with publicly available information at the time they did their blog post Misters Blaxill and Olmsted took great efforts to find information about the inventor policies at multiple other institutions–much more effort than was required to find the accurate information on CHOP’s own website.
$6M is a lot of money, don’t get me wrong. Dr. Offit has acknowledged this in his statements. But, it is much lower than the estimate that Mark Blaxill and Dan Olmsted have publicized. The honorable thing for these two gentlemen to do now is to correct their mistake.
The real honorable thing to do is to not only correct their error, but to correct the error wherever it has propagated.
What is more important than the amount of the sale is the fact that CHOP sold its interest in the patent. Why is that important? Because that means that the amount of money CHOP can make from this patent will be unaffected by just about anything Dr. Offit does or say.
But, I’ve strayed a bit on this post, away from the NAA. The source of the misinformation is the Age of Autism blog and Misters Blaxill and Olmsted. Perhaps the NAA could use the argument that they didn’t create the misinformation, they were just passing it along? Except that the NAA sponsors the Age of Autism blog.
Back to the rest of the press release. It is an amazing piece of work. I found it especially odd when the NAA interview themselves and make it sound like news. They don’t try to hide it, they give quotes from Wendy Founier and Jim Moody…and then list themselves as the contact people for the press release.
They also interview Dr. Wakefield, who calls Dr. Offit “disingenuous” at the beginning of the paragraph, and finishes the paragraph showing concern for how people like Dr. Offit might impact the integrity of the swine flu vaccine.
Anyone detect the irony there? Dr. Wakefield (and the NAA) are so concerned about the swine flu vaccine program that they worry about Dr. Offit impacting the integrity of the program?
Talk about disingenuous.
The press release repeats one of the stranger of the accusations against Dr. Offit–the claim that he does not treat patients with autism:
Beyond Offit’s financial conflicts, autism advocates are also dismayed about the physician’s credibility on speaking about autism in general, as he does not treat patients with autism.
Unless the NAA wants to state that autistics in Philadelphia do not get infectious diseases, it is pretty certain that Dr. Offit has treated a number of autistics in his long career.
To cap this all off, the Age of Autism blog, sponsored by the NAA, ran a post advertising the NAA press release. However, instead of calling it what it is, a press release, they framed it as being “reported by Reuters”.
Yeah. They tried to make it sound like news reporting by a major outlet rather than a press release.
David Brown, please read the article before making incorrect statements. The payment to CHOP was $182 million (Wistar received a separate and earlier $45 million dollar payment). From this, Offit would have received the entirety of the CHOP inventor’s share. Benchmarks show the inventor’s distribution can range from 15-35% of royalty income, with the current CHOP policy set at 30% (a share we didn’t feature in our calculations because it is a new standard and may not have been the relevant one for Offit’s distribution). In other words, our estimate is conservative and uses a percentage that is at the very low end of the relevant range.
I informed Mr. Blaxill and Mr. Olmsted ahead of publishing this post of this information, specifically that (a) Dr. Offit did not receive the entirety of the CHOP payout and that (b) their calculation of the CHOP inventors’ share was incorrect and not even a conservative estimate. I included links they could use to confirm the information. I encouraged them to make the correction. Mr. Blaxill and Mr. Olmsted have declined.
Needless to say, as one of the book’s targets is the vaccine/autism camp and Chris mentions Age of Autism, that nest of anti-vaxers has dominated the comments with an orchestrated campaign. Here is my own attempt to stem the tide.
Those who have argued for a link between vaccines and autism adopt two contradictory positions. On the one hand we have those who point to the epidemiological studies as evidence of an autism epidemic whose growth is supposed to coincide with changes in the United States schedule for early childhood vaccinations. But when population studies fail to find a connection between vaccines and autism we get a different argument. Apparently there is a subset of genetically susceptible children that is too small to show up in population studies of vaccine safety. We have yet to hear a convincing explanation for this alleged genetic susceptibility to vaccine induced autism. But the parents who subscribe to this view are all convinced that, whatever it is, their child must have it.
It is difficult to see how this latter group could be persuaded to abandon their belief that that in their individual cases correlation does indeed equal causation. But I am at a loss to understand why they are willing to make common cause with the autism epidemicists, who are clearly and demonstrably wrong.
Regarding prevalence we have a very good idea why prevalence used to be 4 in 10000 and is now approaching 100 in 10000. In 1966 Victor Lotter carried out one of the earliest epidemiological studies in the county of Middlesex in the UK. He used a very narrow definition of autism in which only children who actively avoided human contact and engaged in elaborate repetitive behaviour qualified for diagnosis. When his students Lorna Wing and Judith Gould repeated the study in 1979 they found a similar rate of between 4 and 5 in 10000. However they also discovered a larger group who also engaged in repetitive behaviour but did not avoid human contact. However they did show difficulties in social communication and interaction. Wing and Gould defined ther problems within the triad of impairments, which also explained the aloof behaviour of the more typical Kanner type autistics. The newly identified members of the autistic spectrum numbered around 15 in 10000. Thus a simple broadening of the criteria lifted the numbers from 4 to 20 in 10000.
Lotter, Wing and Gould had all studied children excluded from mainstream education. In 1993 Stephan Ehlers and Christopher Gillberg went looking for children with the triad of impairments in mainstream education in the Swedish city of Gothenburg. They found a rate of 71 in 10000 for children with an IQ greater than 70. The children who were identified were known by their teachers to be having social and/or educational problems but the nature of their difficulties had not been recognised prior to the study.
So, as early as 1994, on the basis of epidemiological studies by Wing and Gould (1979) and Ehlers and Gillberg (1993) it was apparent that autism in all its manifestations including the classic Kanner type and the Asperger type affected at least 91 in 10000. The National Autistic Society in the UK issued a fact sheet to that effect. The modern version is available on our website.
In 15 years the figure for all autistic spectrum disorders in the UK has moved from 91 in 10000 to 116 in 10000 (Baird et al 2006). Thus it has remained flat at around 1 per cent for the whole period of the so-called autism epidemic. And that 1 percent represents the whole spectrum with perhaps a fifth to a quarter consisting of people with recognizable learning difficulties that are moderate or severe. The rest are more able.
I see no reason to doubt that the CDC estimate of 1 in 150 and the figures from recent studies that more closely approach the overall prevalence figures from the UK contain within them similar proportions of more and less able individuals. It is a shame that it has taken health and education services on both sides of the Atlantic so long to catch up with the true prevalence of autism amongst our children and begin to tailor services to meet their needs.
That still leaves those more able adults, often living a life less ordinary without the benefit of diagnosis and support, but still experiencing difficulties in their daily lives. The recent I Exist campaign by the National Autistic Society in the UK has influenced our government to take adult issues seriously
Comments are still open. Please visit and counter the collective lunacy of the anti-vaxers.
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