Yesterday I attended Westminster Skeptics to hear Brian Deer, an investigative journalist for the Sunday Times, talk about the ordeal he has been through in exposing Andrew Wakefield – the man who sparked widespread parental hysteria over the MMR vaccine. It took 6 years of fighting to finally get the paper formally retracted.
I strongly urge everyone interested in this matter to read this. It’s Brian’s own summary of the case background, for anyone who isn’t already aware of it. I won’t repeat it all – get the words from Brian himself. Edit 2011: He’s also written about it in the BMJ.
I’ve got a few interspersed video clips – sorry for the dreariness (& strange noise of my camera), I didn’t increase the brightness much to keep the slides visible. My first foray into iMovie; ooh the fun I could have with that program!!
The Trouble with Andrew
Wakefield (I may refer to him as AW for convenience, that’s not an expression of sympathy for him though) qualified as a surgeon, not a clinician. He was never licensed to treat patients GP-style. On top of this, the Royal Free, where he examined the 12 children detailed in his 1998 Lancet study, does not have an autism unit of any kind so already this is suspect.
Astonishingly, he was funded to the tune of £435,643 (+ expenses) by the Legal Aid Fund – an access to justice service for cash-strapped individuals – the money for which comes from tax payers.
Deer runs through many (with hindsight, blindingly obvious) clues as to the true nature of Wakefield’s dodgy research.
There was zero evidence at the time for a vaccine-autism link; it was all an elaborate fishing exercise. As was later discovered, he’d been set on a path to find such a link for 2 years beforehand.
Predicting one’s conclusions with startling accuracy is always a bit of a giveaway in research. It just doesn’t usually work like that (believe me, I know!).
He took enteritis (small intestine inflammation) and disintegrative disorder (a serious condition on the autism spectrum disorder or ASD scale; actually moreso than autism itself) and concluded that they were
Undeniably indicative of a vaccine-induced disorder
At a press conference, when at the time AW was being paid £150/hr to be a principle expert with the purpose of raising lawsuits against big pharma companies, he HAD to say the product is unfit for marketing – if you say anything else, the lawsuit has to fail. His lawsuit cost £18m public money with another £45m on top paid by pharma.
He still denies any conflict of interest.
But what if it’s true?
Well, there’s always the chance that health scares are only media hoaxes, and there was certainly plenty of bad journalism around where this case is concerned.
If it were true (and as Ben Goldacre will always tell us, medicine makes mistakes – when we find out we’ve made one, especially one that’s killing people or seriously ruining their lives – we have to shout about it and fix it as quickly as possible) then it should be happening a lot.
This vaccine has been (and should continue to be) given to thousands upon thousands of children. It would be entirely responsible for the media to pick up on such a serious side-effect, should it exist.
Or, it’s simply a scam.
From July 1996 to February 1997, AW met a series of parents with very specific claims.
The neurosurgeon, in Ward B, with the defibrillator
Going back to the clues, some in particular got Brian’s alarm bells ringing after being assigned by the Sunday Times to investigate Wakefield’s claims.
- The case of the DTP (diptheria, tetanus, pertussis) vaccine
When this vaccine was investigated, a time limit of 14 days was given for onset of symptoms; if it was after that, it didn’t count as a result of the vaccine. When Brian noticed this, he thought
I am absolutely not getting involved in this
He saw the DTP paper and thought there must be people involved who knew of the case, specifically lawyers.
Two advantages to going about medical fraud are in the nature of medical research itself; it is published with a great degree of anonymity, where patient data are concerned.
Medical confidentiality and legal privilege gave a fantastic screen for AW’s work.
- The disparate locations of the children
Wakefield and his legal team solicited the patients he worked on. Brian has a collection of letters that ask for referrals from GPs to AW and that phone calls be made.
Deer points out that anyone who has dealt with hospitals (either working for or receiving treatment knows that consultants do not phone you.
- 8/12 parents originally blamed MMR. Why not all of them?
In fact, all 12 did. The last to come around to this point of view actually did so after a visit from a lawyer who explained some of the things they might have expected to see, should the vaccine be responsible for some change in their child.
2 in 3 sounds vaguely epidemiological. AW manipulated the data to show the 14-day time link, causing a drastic alteration in the mean and range of the onset data by removing outliers.
One parent even categorically stated
That is not true
when shown the paper and realising it was in fact their child that was referred to.
The “symptoms” that AW used to describe his disorder do not really qualify as such (see film); 3 of the children didn’t even have autism, only one of the 12 actually had regressive autism (in which the child appears to be developing normally then regresses at some point).
Wakefield misrepresented the times of onset extremely; for children 4, 8 and 11 it was in fact before they received the vaccine. For 2 it was months after it (Deer has personally interviewed her and seen submissions for litigation to confirm this).
11 and 12 were reported to have ‘bowel enterocolitis’; however on re-examining the samples, an independent pathologist with no knowledge of the case reported that most were
Endoscopically and histologically normal
Colitis requires some sort of injury; there should be neutrophil infiltration (a type of white blood immune cell) and this was not found to be significant in any of the samples.
Essentially, not one of the 12 children fits his bill (the details of the pathology are expanded on very well in this autism blog), yet he still denies everything.
Some of the many gems Wakefield comes out with in defence/as an excuse:
I just listened to the parents…. they will always tell you the truth… I’m a victim of dark forces! … There is no conflict of interest.
When any doctor anywhere know parents are rarely (though not never) on the money and the aforementioned ‘dark forces’ actually include our very own (Westminster Skeptics president!) Dr. Evan Harris.
In the end… they’re all greedy
Deer made good use of quotations from the film Casino (as above) in his talk. He closed with:
To be a charlatan, you have to be friendly, persuasive… have social skills… what distinguishes them is they’re greedy. They can’t resist going too far.
Jack of Kent called the conflict of interest intolerable and marvelled at the outcome of Wakefield’s attempted libel case:
He even upset David Eady!
Evan Harris addressed the room (which greeted him with thunderous applause, as an attempt to reassure him that despite losing his Oxford & West Abingdon seat to the tory first-timer Nicola Blackwood), first noting that Brian had showed us less than 10% of the material he has on Wakefield.
He also reminded us that Brian is a journalist, not a scientist/medical doctor, and has done a fantastic job of wading through the terminology (indeed, where seasoned scientists – Lancet editors included – had failed to do so).
The Lancet were given the opportunity of advance warning so that they could give their view of the situation. They didn’t do this and instead leaked the story; since Brian’s income as a journalist relies on publishing stories this was yet another blow to him personally.
Evan points out the strict restrictions in medicine regarding testing on children, due to their inability to consent, and the refusal to give parents the power to make decisions for them (though here my mind turned to MGM and why this is still permitted).
In this case, the medical establishment failed.
Did Wakefield set out to be deceptive and fraudulent to the level we now know him to be, or did it perhaps snowball accidentally?
He recalls that AW took a book out from the library, Field’s Virology, and applied what he learned from this in order to make the conclusion that measles causes Crohn’s disease. Anyone (and I have some friends) with this knows it’s not true; we don’t know what causes it and it can be incredibly serious. As has been said before, discovering the cause of something is no crime (far from it); as long as you actually have evidence to back up that claim.
This is why he wished to perform colonoscopies on the children (again anyone who has experienced this will probably not wish it on anyone, especially not kids), to see if he could find measles virus in the terminal ileum to support his hypothesis.
We are also reminded of Barry Marshall from Perth Hospital, who had the (then outrageous) idea that a pathogen caused stomach ulcers. We now know this to be true (Helicobacter pylori does indeed cause them) and Wakefield had extrapolated this result to measles in the bowel —> autistic enterocolitis.
I would say that Andrew Wakefield is a pathological liar… he was driven to this
Yet another colossal conflict of interest lies in his patent for a single measles vaccine. Brian references The Producers, in which a key point is the ability to make more money out of a ‘flop’ than a success; Biotech companies can make money from ‘mug punters’ who don’t know things will not work (and here, I think of homeopathy!). The vaccine was never going to work, but in discrediting MMR, Wakefield created a market for it anyway.
He planned a testing kit and a cure for the measles/autism/bowel disease collective syndrome he dreamt up. The medical school allowed this because they knew that AW was being paid by lawyers whilst carrying out his research and he was protected (here I think of the Pope!!).
David Colquhoun remarks that it was not the whole of the medical establishment covering his tracks; Mark Pepys got rid of him eventually.
He was offered one year’s paid absence to prove his results but he refused, including denying anyone access to the biopsies… He was not treated unfairly, as many claim.
His question settles on asking Brian if he could write up the story regarding the medical school as its conduct is still of major concern.
Brian agrees and tells us that Malcolm Grant approved a 48-hour denial clause and fought the investigation for 3 years. He also finds the recent BMJ editorial on the subject to be somewhat inadequate (though I won’t go into that as the principal of my university wrote it; perhaps another time… when I’ve finished my PhD perhaps?!).
They could not retract the paper straight away because
The medical school conducted an investigation and cleared it.
A cover-up certainly worthy of further exposure, after repeated dismissals of Deer’s hard work simply because he’s “not a doctor”.
With regard to the rest of the authors, who pulled their names from the paper when the scandal peaked, the 2nd author was also charged but not found guilty of dishonesty.
Someone received a Tweet, supposedly from “the best friend of the mother of the Californian child” (that’s number 11), saying that “the family was living in Fulham at the time”.
Brian is not impressed. He has clearly seen it all before; my best friend’s cousin’s boyfriend’s mate knows such-and-such… and what results is rarely, if ever, reliable.
He knows they were not living in Fulham at the time, having met the family twice in person (both here and in California). The father denies that any of the results are true.
Jack of Kent then reads another Tweet (from someone like @TrishDecien, perhaps) saying:
My view is that Wakefield was sincere, if misguided/sloppy. Believe me, the parents needed, & still do, explanations about autism
None of us disagree that we need explanations about autism. However, that is not the point. The man committed serious medical fraud, has played on the trust and fears of parents the world over. When someone mentions that now parents are doubting, however much we discredit AW and his ‘work’, the problem will not go away – Deer agrees
You can’t un-ring the bell
@Flayman makes another good point.
My wife was a research biologist. She read Wakefield’s paper and even though she felt it was “quite rubbish science”, there is the doubt – to ignore the conclusions might be negligent? How could you ever forgive yourself?
Sometimes no amount of intelligence can overcome the combination of parental paranoia, care and guilt.
Finally, Evan asks about Brian’s experience of hate mail.
Brian observes that he tends to see two forms of blame; for the vaccine, and for oneself. He considers guilt a kind of self-directed anger; some parents (dozens to scores, he says) blame him personally and have resorted to obsessive stalking.
I have myself had to delete many facebook acquaintances after arguments of varying lengths over their anti-vax stance. It is a faith position. Parents who want an explanation and are convinced there’s a pharmaceutical company conspiracy (my quote of the day to @facesake: Who is this big farmer and what’s his game anyway?) cannot be persuaded with facts, because their convictions aren’t based in evidence – it’s emotional.
Deer has saved many lives through discrediting Wakefield, though the likes of Jenny McCarthy (who has finally had to admit her son does not in fact have autism) and frightened parents continue to do their damage.
New York Times article by Susan Dominus, in which Wakefield claims bloggers are being paid by Big Pharma to make negative comments – I *wish*!!
BBC Radio 4 programme presented by Adam Rutherford, featuring interviews with Wakefield and Deer.