Just in case there are any readers who haven’t heard of Dr. Offit, he is an infectious disease specialist, co-inventor of a rotavirus vaccine, and outspoken critic of the idea that vaccines caused an autism epidemic. Or, as Ms. Wallace writes in her introduction, “To hear his enemies talk, you might think Paul Offit is the most hated man in America.”
The piece points out the very real dangers of vaccine preventable diseases. It also discusses briefly some of the luminaries of the anti-vaccine movement: people like Jenny McCarthy, Robert F. Kennedy Jr and his deeply flawed article in Rolling Stone, Barbara Loe Fisher…unfortunately it is a long list.
Ms. Wallace also discusses autism’s thriving alternative medical community. Search for “Enter the snake oil salesmen” if you want to find that section quickly. Ms. Wallace attended an Autism One conference and reports on her findings.
In discussing how the membership in the CDC’s Advisory Committee on Immunization Practices has changed from mostly medical and vaccine professionals to mostly epidemiologists and public health professionals, Ms. Wallace writes:
That’s not by accident. According to science journalist Michael Specter, author of the new book Denialism: How Irrational Thinking Hinders Scientific Progress, Harms the Planet and Threatens Our Lives, the controversy surrounding vaccine safety has made lack of expertise a requirement when choosing members of prominent advisory panels on the issue. “It’s shocking,” Specter says. “We live in a country where it’s actually a detriment to be an expert about something.” When expertise is diminished to such an extent, irrationality and fear can run amok.
Dr. Offit makes a very good point in the article about risk:
“The choice not to get a vaccine is not a choice to take no risk,” he says. “It’s just a choice to take a different risk, and we need to be better about saying, ‘Here’s what that different risk looks like.’ Dying of Hib meningitis is a horrible, ugly way to die.”
Unfortunately, we now have highly visible doctors like “Doctor Bob” Sears who recommend that people who don’t vaccinate “hide in the herd” so to speak. He tells people in his book that if they don’t vaccinate they should keep quiet about it so that vaccination rates stay high and their family remains protected by the rest of us who do vaccinate.
While morally reprehensible, Dr. Bob’s advice is accurate. From the Wired story:
The frightening implications of this kind of anecdote were illustrated by a 2002 study published in The Journal of Infectious Diseases. Looking at 3,292 cases of measles in the Netherlands, the study found that the risk of contracting the disease was lower if you were completely unvaccinated and living in a highly vaccinated community than if you were completely vaccinated and living in a relatively unvaccinated community. Why? Because vaccines don’t always take. What does that mean? You can’t minimize your individual risk unless your herd, your friends and neighbors, also buy in.
Wired makes special note of the organizations which are particularly vocal in the “anti-vaccine” message:
Anti-Vaccine Websites
Though many of these organizations would not define themselves as such, these are the most active organizations and websites in the current battle against vaccines:
National Vaccine Information Center
Autism One
Generation Rescue
SafeMinds
Treating Autism
National Autism Association
Autism File
As Orac points out, the Age of Autism blog would fit in well with the above list.
I wish I could bet on the criticisms that are headed towards Dr. Offit after this article. I’m fairly confident I can pick out the paragraphs that will be focused upon.
If you read the article, you will understand this: Bonnie, thanks for loaning us your husband. He is a true friend to children.
The Autism Science Foundation invites applications for its Doctoral Training Award from graduate and medical students interested in pursuing careers in basic and clinical scientific research relevant to autism spectrum disorders.
The proposed training must be scientifically linked to autism and may be broadened to include training in a closely related area of scientific research. Autism Science Foundation will consider for training purposes all areas of related basic and clinical research including but not limited to: human behavior across the lifespan (language, learning, communication, social function, epilepsy, sleep, repetitive disorders), neurobiology (anatomy, development, neuro-imaging), pharmacology, neuropathology, human genetics/genomics, immunology, molecular and cellular mechanisms, and studies employing model organisms and systems.
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.
One of my big worries is that the public will someday turn against the autism community. We, and all segments of the disability community, all rely heavily on the public’s good will. One way we could lose that is if epidemics of infectious disease return and people point the fingers at “autism spokesperson” Jenny McCarthy. We as a group could be in for some real trouble.
One reason to blog and advocate against pseudoscience and dangerous celebrity advice is to make it clear that the autism community as a whole is not behind Jenny McCarthy and her crowd.
So you can imagine the dismay I feel when I search for autism related articles in the Nature journals and I hit upon this one, The dangers of denying HIV.
Why would that article come up using the search word “autism”, I wondered. AIDS denialism is a truly horrible movement in the world. It leads, quite clearly, to disease, suffering and death. Probably no where is AIDS denialism more a problem than in South Africa. The author of this brief note in Nature, Seth Kalichman, notes:
Inadequate health policies in South Africa have reportedly led to some 330,000 unnecessary AIDS deaths and a spike in infant mortality, according to estimates by South African and US researchers. This carnage exceeds the death toll in Darfur, yet it has received far less attention.
This is, he argues, due in large part to AIDS denialism–promoting the idea that HIV does not cause AIDS and encouraging people to forgo treatement.
The tragic events in South Africa have been exacerbated by AIDS ‘denialists’ who, Kalichman alleges, assert that HIV is harmless and that antiretroviral drugs are toxic. The author discusses the psychology of denialism, which he says is “the outright rejection of science and medicine”.
Dr. Kalichman makes it very clear that denialists are acting outside of the boundaries of decency:
Kalichman dismisses denialists’ attempts to portray themselves as intellectually honourable dissidents who question accepted wisdom. He draws clear distinctions between dissidence and denialism; the latter, he says, is merely a destructive attempt to undermine the science.
What does this have to do with autism? Dr. Kalichman groups vaccine-autism groups in with AIDS denialists in their tactics:
Groups that support intelligent design, doubt global warming, claim that vaccines cause autism, argue that cigarettes are safe, believe that the terrorist attacks of 11 September 2001 were an intelligence-agency plot or deny the Holocaust all use similar tactics.
That is an “ouch” moment. To see that the outside world is starting to group autism activists with so many denialst groups is troubling, to say the least. If there are more outbreaks of disease that can be tracked back to vaccine rejectionism sparked by autism groups (for example, recent outbreaks of whooping cough), we are in for a public relations nightmare.
If you don’t think the analogy to AIDS denialists is well earned, consider this passage:
Kalichman describes how quacks, like some of the academics involved, misrepresent their qualifications to create an illusion of authority. One, he claims, treats AIDS with hyperthermia, massage, oxygen, music, colour, gem, aroma, hypnosis, light and magnetic fields, each word followed by “therapy”.
We have certainly seen inflated qualifications and the list of therapies could easily be attached to autism.
It isn’t as though Dr. Kalichman hasn’t read up on autism, either. He concludes his piece with:
Action might have widespread benefits: Paul Offit’s tour de force, Autism’s False Prophets, claims that pseudoscientists and quacks have used similar tactics to parasitize the suffering of desperate parents by persuading them that vaccines cause autism. As Kalichman says, denialism “will not break until the public is educated to differentiate science from pseudoscience, facts from fraud”.
“denialism will not break until the public is educated to differentiate science from pseudoscience, facts from fraud”
We need more quality research in autism, no doubt about that. Private organizations can fund/manage this. But, there are Research Organizations and ‘research’ organizations.
When I saw ASF’s webpage, I was immediately drawn to the paragraph on their scientific advisory board:
ASF’s Scientific Advisory Board, still in formation, includes Dr. Emanuel DiCicco-Bloom (UMDNJ-Robert Wood Johnson Medical School; past program chair of the International Society for Autism Research); Dr. Ami Klin (Yale Child Study Center); Dr. Harold Koplewicz (NYU Child Study Center); Dr. Sharon Humiston (University of Rochester); Dr. Eric London (NYS Institute for Basic Research in Developmental Disabilities and co-founder of NAAR); Dr. Catherine Lord (University of Michigan); and Dr. Matthew State (Yale Medical School).
There are some well-known names in there. Dr. Catherine Lord, for one, is a real heavy hitter in the autism world. There are some other names that were new to me, so I decided to do a quick check on them. One measure I use is how many papers a person has in Autism. To measure this, I used the ISI Web of Knowledge database. I searched for papers with the person in question as author and with topic=autism. I checked number of papers and number of highly cited papers. Keep in mind that not all papers get listed by ISI. But, it is one way to measure how active someone is in autism.
32 papers on autism. Six of which have been cited over 50 times. That is impressive. He has six autism papers published in 2008–so he’s currently active in research.
He’s at the NYU child study center. I don’t get any hits for him as an author with the subject=autism in the ISI database. He does have a long publication record, though.
You may recall his name. Dr. Koplewicz and the NYU Child Study Center was behind the “Ransom Notes” advertisement campaign that didn’t go so well.
I get four autism papers for Dr. London in the ISI database. One of which, The environment as an etiologic factor in autism: a new direction for research shows that this is also someone who has demonstrated an “open mind” to the the idea that environmental causes could be important in autism etiology. But, I expect he doesn’t get much credit for that in the vaccines-cause-autism world since he doesn’t like the “correct” version of environmental etiology.
46 papers on autism, with 17 papers cited over 50 times. Wow, 1/3 of her papers are very highly cited! That is impressive.
Her bio includes this statement of awards:
Lord is Chair of the Early Intervention in Autism Committee, National Academy of Science. She received the Irving B. Harris Early Childhood Lecture Award in 2004 and was a Finalist for the New York University Child Study Center Scientific Achievement Award in 2005.
Dr. State is from Yale. I only get 3 papers from him in my search. One of which, though, is in Nature Genetics and has been cited 178 times. If you aren’t familiar with the Nature journals, I’ll point out that these are highly prestigious journals. Suffice it to say, nothing in the “vaccines-cause-autism” research world has even come close to a journal of this caliber.
This is a pretty good group for a brand new organization–one that is still growing. We will have to wait to see what the Autism Science Foundation does, but for now it appears that, yes, there is a new research based autism organization in town.
The Autism Science Foundation’s mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization will also provide information about autism to the general public and will serve to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.
You might expect me to have mixed opinions regarding this organisation and that is the case. On one hand, the are very very positively consigning the autism/vaccine episode to the scientific dustbin where it belongs.
Vaccines save lives; they do not cause autism. Numerous studies have failed to show a causal link between vaccines and autism. Vaccine safety research should continue to be conducted by the public health system in order to ensure vaccine safety and maintain confidence in our national vaccine program, but further investment of limited autism research dollars is not warranted at this time.
Two thumbs up to that. My own opinion is that it is not just a waste of research dollars it is also an insulting slur to autistic people to be denigrated as ‘poisoned’ in some way.
So thats the good. And that bad? Well, consider this:
Autism Spectrum Disorders are characterized by significant impairments in social interaction and communication skills, as well as by the presence of extremely challenging behaviors. Such behaviors include stereotyped motor behaviors (hand flapping, body rocking)
I don’t consider hand flapping or body rocking to be ‘extremely challenging behaviours’. I consider them to be the typical movements of an autistic person either communicating or adjusting to an environment or both. I have never challenged my own autistic child’s hand flapping or body rocking and never will.
Moving on, who is on this Foundation? Firstly and most familiar to me is Paul Offit. I think this is an *excellent* start. Karen Margulis London I know next to nothing about. Same with Michael Lewis. That leaves one other.
As we all know Alison Tepper Singer left Autism Speaks earlier this year due to its anti-vaccination leanings. As we _also_ all know, prior to that she was best known to the autism community as one of the central figures in the very unfortunate ‘Autism Every Day’ video.
Ms Tepper-Singer and I have been communicating via Facebook for the last few weeks. The ‘Autism Every Day’ video has been discussed as well as a few other things. I also discussed this with a few close friends (some autistic, some not).
In the interest of totally coming clean, I’d like to therefore say that we have been talking about the ASF for a few days. I have made clear to Ms Tepper-Singer that my clear priority is the friendships I have and community I am part of. The website is very new and therefore the language on it could be very much better and should be for example. This is one case of where I would very much like to see more respectful and accurate language being used.
But overall, I would like to see an autistic person in at least the same position as I am – advising. I was therefore very heartened to learn that that is already the case. I don’t think it would be fair for me to name that person and I will ask that if anyone does know then please do _not_ name them in the comments or elsewhere. I see forced ‘outing’ as akin to bullying so please refrain.
This is going to be a surprise for a lot of people I guess. The man who created the petition that has gained nearly 2000 signatures speaking clearly against Autism Speaks, ‘Autism Every Day’ and Alison Tepper-Singer in particular colluding with that same Alison Tepper-Singer.
All I can tell you is why I am doing this. I am doing it because I think that to have someone(s) on the inside is much more productive than being on the outside. This community has been passed over time and again and now we have a legitimate organisation that I believe _wants_ to learn to do the right thing fulfilling the mantra of ‘nothing about us without us’ and doing it in a way that is dedicated to good science, not harmful and costly quackery.
Could I be wrong? Of course I could. And if I am then I will step back and not participate. But I think that the only we way we can achieve our goals is to take chances now and then. I will be utterly transparent and as I have told Ms Tepper-Singer no doubt I and the other adviser(s) will have plenty to say. And if things do not work out then the onus falls on me to explain myself and me alone. There will be no comeback on the neurodiversity community.
Following Bernadine Healy’s April 14th post in USNews, Orac dealt her a dollop of respectful insolence which is a very good read, as are the comments.
However, I wanted to do a kind of accounting on Healy’s post, to see just how firm a grasp on the whole situation she has. So, lets start.
McCarthy and Carrey and two colleagues from the autism advocacy group she founded, Generation Rescue…
Oops. Sentence two, first error. McCarthy did not found Generation Rescue, JB and Lisa Handley did.
…and parents are raising legitimate concerns, yet unanswered…
I have been on the front line of this debate for the last six years. Once upon a time the question ‘do vaccines cause autism’ _was_ a legitimate one to ask. But that question has been asked and answered. Since about 2003/4 there have been _no_ legitimate concerns raised by parents or anyone else. The MMR question has turned out to be both a con and the result of bad science. The thiomersal question is just a defunct hypothesis, given that thiomersal was largely removed from vaccines by 2002 and yet autism rates continue to climb. Despite desperate attempts to rebrand the autism/vaccine question (aka when you know you’re right and yet turn out to be wrong, know you’re right with something else) into questions about greening vaccines when simple searching reveals that newborns contain most vaccine ingredients either naturally or via breast feeding. Or the hellacious vaccine schedule despite the fact that the UK for example has a higher rate of autism (1 in 100 vs 1 in 150) but a lower amount of vaccinations.
This controversy might be resolved if we can focus on a few big questions, with an open mind…
Mistake number three. There is no controversy. In the field of _science_ asking the _scientific question_ ‘do vaccines cause autism’, there is no controversy at all. What there is is a very good and well executed media campaign to manufacture one. However, the facts remain the facts – no vaccine, no vaccine ingredient and no vaccine schedule either solely or together cause autism. There is simply no sound science to support that set of ideas. If there is a controversy it is how the media continue to let people stoke the fire of this idea.
Influenza vaccine, mandated here starting at age 6 months…
Mistake number four. As far as I can tell, the flu vaccine is not mandatory in the US. Certainly this article covering the 2008/09 flu season states:
It will not be mandatory for every child to have the flu shot…
Onward.
…a study from Canada last year found that delaying the diphtheria, tetanus, and pertussis vaccination just a few months decreased by 50 percent the risk that a child develops asthma…
Mistake number five. This has absolutely no bearing an autism. The article is entitled ‘The Vaccines-Autism War: Détente Needed’. Not ‘vaccines, asthma, maybe other stuff as and when I think of it-autism war’. As such this strawman argument has nothing to do with autism.
(Side note: Healy says we should read two doctors thoughts on the pros and cons of a flexible vaccine schedule. It maybe will come as no surprise that the doctor who thinks the US needs a flexible vaccine schedule is ‘Vice chair, Section on Complementary and Integrative Medicine’ of the AAP).
The goal is to get all kids appropriately vaccinated…
Mistake number six. The organisation Healy references at least twice, Generation Rescue, have this on the front page of their Facebook Group
“I found that the whole vaccine business was indeed a gigantic hoax…” –Dr Kalokerinos MD June 1995
“There are significant risks associated with every immunization and numerous contraindications that may make it dangerous for the shots to be given to your child…” — –Dr. Robert Mendelsohn MD, pediatrician
Onward again.
…Hannah Poling, for example, who has an underlying mitochondrial disorder and developed a sudden and dramatic case of regressive autism after receiving nine immunizations, later determined to be the precipitating factor…
Mistake number seven. Nowhere, repeat, nowhere has it been published that Hannah Poling’s vaccines were the ‘precipitating factor’ in her autism. If anyone thinks that it has been published I would like a link to that document. I’ve been asking for this for over a year now and no one has ever managed to show me where this is stated.
What _has_ been said is that following her vaccines hannah showed ‘features of autism’. As I have said numerous times, ‘features’ of autism is not interchangeable with autism. If it was, then the medical report co written by four doctors including Hannah Polings father Jon Poling would have simply said ‘autism’. In fact, this medical case study listed a number of symptoms (over 20) of which only three were found on the DSM (IV) (the official diagnosis for autism). She may well have been autistic and she was determined to have been vaccine damaged but that does not automatically mean one caused the other and in fact by the lack of any of the many other symptoms needed to reach a diagnosis of autism, we can see that they were not.
Amd again, onward:
Other children may have a genetic predisposition to autism, a pre-existing neurological condition worsened by vaccines, or an immune system that is sent into overdrive by too many vaccines, and thus they might deserve special care. This approach challenges the notion that every child must be vaccinated for every pathogen on the government’s schedule with almost no exception…
Not exactly any mistake here but this is very misleading. Its well know _already_ that some kids _do_ have conditions that are not amenable to vaccines. Less than 30 seconds of searching the CDC website led me to the appropriate information. I think it is incredibly disingenuous and very ignorant of Healy to comment in the manner she has.
Onward we trudge through the morass.
Paul Offit, an infectious-disease expert from the University of Pennsylvania who has been a frequent spokesman and adviser on vaccine policy (and by his admission has become wealthy by developing the now mandated rotavirus vaccine)
Mistake number eight. The Rotavirus vaccine has never been mandated anywhere that I can see.
So this is Dr Bernadine Healy, a scientist with 125 records in PubMed. Impressive until you realise that, just like this, they are 125 blog entries from US News. That means we can say that on average Healy has got 1,000 mistakes into PubMed.
Polly Tommey was due to see Prime Minister Gordon Brown today after a successful billboard campaign, costing a reported £500,000, that invited Gordon Brown to meet with her if he wanted to save £508 million pounds. Ms. Tommey’s son is autistic and she is concerned that there is a terrible fall off in provision and support when you transition from school to adult services. She wants the government to invest in autistic people and her message is that appropriate support will save the government money by lifting autistic people out of benefits and into paid employment. As she says in her press release:
“We want better support, we want politicians to engage with us and we want the acknowledgement and support that our children deserve as fully contributing members of society.”
This is all very admirable. But Dr Michael Fitzpatrick has written An Open Letter to Gordon Brown in which he questions how she expects to achieve her aim.
In her campaign posters, Mrs Tommey, whose 12-year-old son Billy is autistic, offers to save the UK government £500 million a year by helping people with autism to get jobs. But it is not clear from the posters how she thinks this can be achieved. However, The Autism File, the magazine she edits, focuses on two issues: supporting the campaign led by the former Royal Free Hospital researcher Andrew Wakefield against the MMR vaccine and promoting ‘unorthodox biomedical’ treatments for children with autism.
The main point that Dr Fitzpatrick makes is that if her message to the prime minister is the same as the one she promotes in The Autism File she would be well advised to think again. He ends thus:
If she wants better provision of diagnostic, supportive and educational services, she might consider adding her energies to the long-running campaigns of the National Autistic Society and others, currently focused on the Autism Bill.
Ms Tommey’s supporters have been quick to respond. At The Age of Autism, Teri Arranga accuses Dr Fitzpatrick of carrying out an inquisition against the Autism Trust and quotes Trust Chairman. Oliver Jones who responded to Dr Fitzpatrick as follows:
I am both shocked and astounded having read your open letter on the Internet this afternoon. How dare you act in such an ill informed manner about a campaign that I and many others have invested significant time and effort in – when you evidently have no idea about what we are actually focused upon.
I find it remarkable that a professional person can take such an aggressive stance as you have done about The Autism Trust’s campaign without having the decency or following proper protocol by making contact with any of the Trustees and specifically myself to determine the objectives and intent of our forthcoming meetings.
The tone of the article is plain. The Autism Trust is trying to improve services and quality of life for autistic people in the UK and Dr Fitzpatrick is misrepresenting their aims and undermining their efforts because he resents Ms Tommey’s support for biomedical interventions. Having read the Autism Trust’s lengthy press release I agree with Dr Fitzpatrick.
“A Personal Campaign”
The press release is clear that this is Ms Tommey’s “personal campaign.” She wishes to speak to Gordon Brown “on behalf of the thousands of mothers of children with autism in the UK.” It repeats that this is “Her campaign” and highlights her role as Editor-in-Chief of The Autism File.
Credibility
Ms Tommey obviously has a lot of business acumen and is an astute campaigner who is adept at using the media to position herself “as one of the leading figures in autism in the UK.” But, as Dr Fitzpatrick points out, her support for discredited notions about MMR and autism and her promotion of unproven treatments do call her credibility into question. This is underlined by errors in the press release. Ms Tommey claims that:
autism numbers have increased dramatically in the last twenty years from 1 in 10,000 in 1988 to 1 in 100 today.
As long ago as 1966 Lotter established a figure of 4 in 10000 for severely autistic children. When Wing and Gould examined the broader autistic spectrum in 1979 they found 20 in 10000. The present figure of 100 in 10000 includes people without significant cognitive impairments who were only added to the diagnostic criteria in 1994.
But Ms Tommey uses these false figures to argue that we face a fresh challenge as for the first time a significant number of adults enter the system. This is a direct contradiction of the NAS I Exist campaign which has successfully persuaded the government that generations of autistic adults have been ignored. The NAS is continuously engaged in discussions with government ministers and officials to get a commitment to action based on the provisions of the Autism Bill which enjoys unprecedented support amongst MPs.
Centres of Excellence
The Centres of Excellence proposed by the Autism Trust seek to provide residential communities in rural locations that provide a “safe haven” for autistic adults. They hope that such centres will provide support for autistic adults in the community, setting up in business or becoming self employed. But most people live in urban settings so it hard to envisage how they will benefit. And despite Mr Jones’ protests it is clear that the Autism Trust is as committed as Ms Tommey is to nonsense cures and treatments. Each centre of excellence will feature a wellness centre offering all manner of quackery including homeopathy, chelation and hyperbaric oxygen therapy, as well as training centre and a conference centre promoting these “biomedical interventions.”
I think that Mr Jones’ complaints against Dr Fitzpatrick are disingenuous. If anything Dr Fitzpatrick should be taken to task for failing to mention the Autism Trust in his open letter. At a time when service providers are moving away from the model of self contained autism communities in favour of closer integration of services within everyday society the Autism Trust proposes to build a worldwide network of such communities.
They expect local authorities to fund places in their residential homes while they are free to develop profitable spin offs promoting quackery. Or, as they describe it in their financial model:
The capital development and business operating model will depend on the facility mix and local partners – as well as the engagement and support available from local and national government. A mix of charitable status and commercially self-standing models will be explored in each location.
Danger
The greatest danger is not that Ms Tommey and the Autism Trust are going to persuade the government to follow their lead. But by muddying the waters with their campaign they may give the government an excuse to back pedal on existing commitments while they consult with this self appointed autism constituency. The best way forward is to get behind the NAS campaign and keep up the pressure for the provisions of the autism bill to become law.
Hardly news I suppose but on AoA yesterday Michael Fitzpatrick was misrepresented by someone called Teri Arranga.
Starting off by referring to Mike as a ‘backwoods doctor’ – something of an anti-British slur since Mike is a GP in London (I guess London is a backwoods now to AoA?) she soon went on to pretty much rant incoherently, built a few strawmen and finished off by quoting some other guy also ranting incoherently.
According to Arranga
…backwoods doctor Michael Fitzpatrick blasted Polly Tommey, founder of The Autism Trust, for the current campaign that seeks better supports and services for autistic individuals in the UK…
Hardly. Here’s what Mike led with:
In response to her ‘Dear Gordon’ billboard advertising campaign (see below), you have invited the British autism campaigner Polly Tommey to discuss her campaign with you on Wednesday 15 April. However, in the interests of children and families affected by autism, I hope that you will refuse support for her key activities – upholding discredited links between vaccines and autism and recommending unproven and untested fringe treatments.
Blasting? Good grief, where do these fragrant middle class ladies live? Its a statement of fact followed by a wish. None of it isn’t factual and its pretty much polite and to the point.
The fact is that the Autism File _is_ Tommey’s key activity. The other fact is that it is distinctly pro-extreme biomed and upholds links between key anti-vaccine researchers such as Andrew Wakefield. But Arranga sees some more blasting:
Fitzpatrick also blasted The Autism File magazine for including information about vitamins (oh, mercy me) and advertisements from “suppliers of biomedical products” (though none of them as lofty as Merck/Vioxx and Eli Lilly like Fitzpatrick’s cronies’ medical journals), among other things.
What escapes Arranga’s attention is that vitamins used as part of a quack ‘treatment’ for autism is both physically damaging (back in 2006 Mary Megson reported on the case of an autistic boy who was hospitalised by a DAN! doctor following an overdose of vitamins) and damaging to the future of autism research. Oh, mercy me indeed.
But no, Mike mentions the vitamins in passing. Arranga somehow neglected to mention the 15 page feature on Andrew Wakefield in the current issue of Autism File. It is peppered with ads for treatments from various biomeddlers.
Then we get to the ‘undermining’.
Fitzpatrick is trying to undermine the efforts of Polly and The Autism Trust to improve quality of life for autistic individuals and their families, many in woeful situations of deprivation and stress….Polly Tommey will be having meetings with members of the Prime Minister’s team in advance of the promised meeting with Prime Minister Gordon Brown himself. For Fitzpatrick to try to undermine this and to try to deny a charity the ability to do that on behalf of suffering individuals in a country deluged by autism is outrageous.
You can almost see the smoke coming out of Arranga’s ears. And for what? This is nothing but a strawman. Nowhere I can see is Mike saying Tommey shouldn’t go for her meeting with Gordon Brown. And nowhere I can see is Mike saying Tommey shouldn’t do the great things described. What he _is_ saying is that Brown should be very careful about the sort of things coming out of Tommey’s mouth about vaccines, treatments and cures. She is, on these issues, a know-nothing and I think it is absolutely correct for Mike to speak up for the autistic people and parents of autistic people who have no interest in the poor science peddled by Tommey’s publication.
Then after the strawman comes the conspiracy theory, this one bizarrely roping in Brian Deer for some totally mystifying reason:
If it threatens the Deer/Fitzpatrick camp when we want to get better services and supports for 1 child in 60 in the UK and their families, then we have touched a nerve. For example, how can trying to get decent housing and family supports threaten Deer and Fitzpatrick’s current repertoire of witch hunting? Why are they so scared that they would resort to petty tactics?
I mean, huh??? Can’t these people read? And whats this 1 in 60 number? The prevalence for autism in the UK is about 1 in 100. Weird.
Also frothing over in indignation is Oliver Jones, Chair of Autism Trust. He is ‘shocked’ _and_ ‘astounded’ (less caffeine feller):
How dare you act in such an ill informed manner about a campaign that I and many others have invested significant time and effort in – when you evidently have no idea about what we are actually focused upon
Oliver – it seems Mike has a very clear idea. Once again, at no point did Mike say that Tommey shouldn’t meet with Brown or discuss her campaign. He is merely pointing out that Tommey is someone with some decidedly odd ideas about autism treatment and that Brown should show these ideas – if they happen to be raised – the door. He also quite rightly points out that if Tommey is really serious about getting better services and education she should join NAS and support their already existing campaigns in these areas. I’m sorry Autism Trust but the phrase ‘showboating’ does spring inexorably to mind.
Their closing paragraph is genuinely amusing:
Secondly, in respect of Michael Fitzpatrick’s ill-informed letter, we would recommend that we should not seek to highlight this man in the eyes of the UK government, but, instead, we should recommend that people write to him directly. People like Dr Fitzpatrick – like Brian Deer – should simply not be allowed to undermine genuine initiatives such as Polly’s – we cannot allow this censorship.
Yeah, damn that censorship Mike (and Brian Deer again???) -how could you dare to voice your concerns and opinion in a public way? Why couldn’t you just shut up?? Oh wait…isn’t that….censorship…d’uh.
AoA have suggested 2 letter writing campaigns. The first is to deluge Mike’s inbox with emails from AoA readers. The second is to flood the PM with emails supporting Tommey.
Thats fine. But Tommey and AoA should know that a second email campaign is now under way. I’ll ask my readers here to contact Number 10 by writing an email to Gordon Brown c/o Katie Martin (Press Office in Downing Street) on email kmartin@no10.x.gsi.gov.uk or to Michael Ellam (Director of Communications in Downing Street) on email mellam@no10.x.gsi.gov.uk.
I’ll be writing as the parent of a severely autistic child to express my support of Mike’s points regarding Tommey’s beliefs. I hope you will too. And note that AT is an international organisation – US citizens are valid contributors also.
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