Channel Five’s new drama about the link between MMR and autism makes great TV. But it gets the story, and the science, disastrously wrong. How did we get to such a level of confusion and hysteria about this vaccine? Ben Goldacre unravels the real MMR story
Thursday December 11, 2003
There’s not a lot you need to know about the link between MMR and autism, except that there’s very little evidence to suggest any link at all. You don’t have to take my word for it, because I’ll describe the science later, and, if you’re interested, give you all the references you need to follow it up. But there is an interesting story here, and that is how a debate on scientific evidence became a question of personalities, and how the standard of reporting, and public understanding of science, has deteriorated to the point where Channel Five feels entitled to broadcast the poisonous and biased drama on the triple vaccine for measles, mumps and rubella you will be treated to – and it is a treat – next Monday.
The only things that the writers of Hear the Silence get wrong, to be fair, are the science and the story. As a drama, it’s moving and convincing. But when you watch it, and you must, make sure you have this paper next to you. Use it as a tick chart for the half-truths, distortions and omissions.
This much is true: Andrew Wakefield was a research scientist at the Royal Free who had previously published about 100 scientific papers when, in 1998, he published a paper showing that he had found traces of the measles virus in the guts of 12 children with autism. Rates of the autism diagnosis had been rising for some years (although not in tandem with increasing rates of MMR coverage). At a press conference, Wakefield suggested that MMR was dangerous and recommended the single vaccine,although with no real evidence to back this hunch. The panic began.
Every other author on the paper present at the press conference endorsed MMR (as they all still do now, although work continues in the field), but you don’t see that in the drama. And Wakefield’s eyes were not dramatically opened to the so-called dangers of MMR by his laboratory finding in 1998, as portrayed in the film: he was a longstanding critic of vaccination, and previously argued that it caused Crohn’s disease. He also used to believe that the single vaccine was the more dangerous one, although then, as now, he had negligible evidence to say that either was worse. In 1998, he did not believe, as portrayed, that MMR posed a risk only to a predisposed minority of children: he was convinced that it posed a great risk to all children.
It goes on. The programme suggests that the autism described in these cases was somehow unusual and new: not true. Regressive autism, where children develop normally but then deteriorate, is well known, and is described in textbooks, from well before MMR was introduced, as occurring in as many as 20% of cases. It’s also well known that some children with autism recover some language skills around the age of five, like the child in Hear the Silence: but in the drama (“it’s like he’s come back from the dead _”) they attribute it to a change in diet, an idea heartily rubbished by the scary fictional doctors.
In the drama, the children in the study are described as having immune systems “in a state of collapse”: again, this is not true. Of the 12 in the study, eight had completely normal immune systems and four showed a minor abnormality of one measure of the immune system only. None was in collapse. The programme also raves on about some grand conspiracy of a big drug company to get rid of Wakefield to make more money from MMR. This is impossible, and anyone can see that by looking in the British National Formulary, online and in most bookshops. MMR is out of copyright, it’s generic, anyone can make it, you could set up a factory and make it yourself if you wanted; it’s not a money-spinner.
But the debate has been reduced to personalities, not facts: Wakefield is the hero; the chief medical officer and the drug companies are the devils. I am not so sure about Wakefield’s portrayal as a reasoned and humble hero. I have a leaked letter from a co-author on the original paper, and a longstanding colleague of Wakefield. It alludes to his now legendary table-thumping behaviour at the Medical Research Council meeting, and then says this: “Wakefield was not treated as a pariah by the hospital and the medical school. Indeed, it is interesting that the research team received lots of offers from distinguished researchers, who were willing to assist in the further development of the project along solid scientific lines. Although many members of the team welcomed those approaches, Dr Wakefield did not. Indeed he became increasingly insistent on meeting only those who were clearly ‘of the faith’. By so doing he made himself a pariah, since no self-respecting scientist would want to dispense with scientific rigour and objectivity.”
So what do we actually know, beyond such personal opinions, about MMR and autism? Autism is a disorder of communication, so it tends to be first spotted when language develops, that is to say, about 18 months, which happens to be about the same time as the first MMR jab. Rates of autism diagnosis have been rising over the past few decades, although probably because people are using the diagnosis more, instead of other descriptors for developmental problems.
Wakefield and his team found some traces of measles virus in the gut of 12 children with autism. That’s the measles virus, not MMR. This lab finding has proved extremely hard for other labs to replicate. Professor John O’Leary of Coombe Women’s Hospital in Ireland, a collaborator of Wakefield’s, seems to have replicated the finding, and might have shown that the virus was from the vaccine, but it turns out maybe not. It’s a very complex technical dispute, because it’s hard to do the laboratory studies to prove if the traces are from a vaccine or infection, and it’s not known what effect measles virus in the gut would have anyway. Either way, these are inconclusive laboratory findings on their own. And that, along with a number of understandably distressed parents, is the sum total of the case against MMR. It proves nothing about causation. It’s all circumstantial: I’m sure you could find 12 children who hate Harry Potter, or have a missing toe, and have measles virus in their gut. That would prove nothing about MMR and hating Harry Potter, or missing toes. And children were starting to talk, or not, at about 18 months, for millennia before MMR was even dreamt of.
To find a small, rare effect, like a small number of kids developing autism from MMR, for example, you need to take a big sample: then you look to see whether people who are exposed to the possible risk factor, in this case MMR, are more likely to develop the adverse outcome, in this case autism. Do you believe that smoking is bad for you? Yes. Because somebody took a hundred thousand people who smoked, and a hundred thousand people who didn’t, and found that the ones who smoked tended to die younger, from heart problems and cancer. It seems intuitively right that smoking is bad for you, because it makes you cough and feel bad. But so does cross-country running, and that’s good for you. That’s why you do science, to check out hunches, because things aren’t always as they seem.
So here we go, checking out our hunch on big populations. Dr Kreesten Madsen, of the Danish Epidemiology Science Centre, compared 440,000 children who had MMR with 97,000 children who didn’t. The children who had MMR were no more likely to develop autism than the children who didn’t. In Finland, one group looked at 3 million MMR vaccinations, found only 31 cases of related gut symptoms, and not one of these children went on to develop autism in the next 10 years. A group in London looked at 498 children with autism, to see if they developed it after MMR. They looked at when they had the MMR jab, and when they developed the symptoms or the diagnosis, and found no sudden blip after immunisation. Another paper shows no increase in GP consultations in the six months after immunisation. Two hundred children in London and Stafford with autism were studied to see if there was a new type of autism related to MMR, featuring bowel problems and sudden regression, a bit like in the drama: half had the jab, half didn’t, and there was no difference in type of autism between the groups. In California, looking at 1,000 children a year, over 14 years, the number of cases of autism increased by 373%, while the number of children getting MMR increased by only 14% (from 72% to 82%). There’s plenty more.
It’s not perfect. Science textbooks are always being updated, and that’s a good thing. If more evidence came out to suggest that MMR caused autism, everyone would happily start changing their mind: something Wakefield has apparently failed to do in light of new evidence. There’s a huge amount of research showing no link between MMR and autism, and no new type of autism, and no effect of immunisation on bowels; and there’s very, very little to suggest a link between MMR and autism. A lab finding, in fact, which is poorly replicated. It’s a difficult thing to study, because everyone gets MMR these days, so there aren’t many people who didn’t get MMR to compare them with. And there’s clearly more work to do, as they say, accusingly, in the drama. But then, the MRC is already funding a large case-control study, among others, to investigate further. In the meantime, do you want the small risk of a small risk, or the definite risk of measles, which kills, blinds, and causes brain damage? They don’t tell you any of this in the drama.
So how did we get to the point where all this evidence was washed away on a tide of hysteria? Clearly, faith in scientists and government has been deteriorating for a long time. But the devil is also in the detail.
In 1998, Wakefield was an anonymous scientist. Did the story kick off when he published this paper? No. Initially, the story was the preserve of specialist reporters in the broadsheets: they were sceptical about Wakefield, and the reporting was generally balanced. Then, in February 2001, Wakefield published a new review paper, in a relatively obscure journal, questioning the safety of the immunisation programme, with no new evidence at all (although in March 2001 he did publish further laboratory work with Japanese researchers showing measles virus in the white blood cells of children with bowel problems and autism). That’s when it kicked off; although it was going to get much worse over the next year. There was more tabloid coverage, and the coverage began to suggest, incorrectly, that medical opinion was equally divided on whether MMR was safe. The journalists who wrote these stories were presumably as capable as you are of understanding the science, but they didn’t bother trying. The Daily Telegraph’s Lorraine Fraser had an exclusive interview with Wakefield, “a champion of patients who feel their fears have been ignored”, and wrote a dozen similar articles over the next year. Her reward came, astonishingly, when she was made British Press Awards Health Writer of the Year 2002.
Demands for single vaccines mounted, as did the number of campaigning pressure groups. The problem with single vaccines is that they need six visits to the GP and six unpleasant jabs. “Are you saying parents don’t care enough about their children to make sure they get all their immunisations?” asked Tim Prager, the writer of Hear The Silence, angrily, when I brought this up with him. No. But it’s four more appointments to miss: maybe you’re ill, maybe you’re on holiday, maybe you move house, maybe you lose track of which ones you’ve had, maybe you can’t see the point of rubella for boys, or mumps for girls, or maybe you’re a single mother with a big family and no time. Also, children spend much more time vulnerable to infection. Especially if you wait a year between jabs, as Wakefield has recommended, out of the blue. You can see the problem.
The biggest public health disaster of all was a sweet little baby called Leo. You can imagine, especially with Carole Caplin on the scene, people might believe the Blairs were the kind of family not to have their children immunised. Especially with everyone talking about “herd immunity”, and the worry that they might be immunising their child, and placing it at risk, in order that the whole population might be safer. In December 2001 the Blairs were asked the question. They refused to answer. Then it went really wrong. Here’s how.
Earlier this year, the Economic and Social Research Council published a paper on the media’s role in public understanding of science. They sampled pretty much all major science media stories from January to September 2002: 10% were about MMR. MMR was also by far the most likely science story to generate letters to the press, so people were obviously engaging with the issue, and MMR was by far the most likely science topic to be written about in opinion or editorial pieces. It also generated the longest stories. In fact, it looks like MMR was the biggest, most heavily-covered science story for years.
So how did 53% of the population end up believing, incorrectly, that there is equal evidence on either side of the debate? Perhaps it’s a matter of who tells the story. Pieces on GM food, or cloning, were twice as likely to be written by specialist science reporters as stories on MMR. With MMR, 80% were written by non-specialist reporters. To name a few, Nigella Lawson, Libby Purves, Suzanne Moore, and Lynda Lee-Potter have all written about their ill-informed concerns on MMR. That’s how a science story, which was based on one simple experiment, even though there was more space to explain the issue properly than any other science topic, became the most poorly covered.
So what was there in all these long stories on MMR? Only a quarter mentioned Wakefield, which seems odd considering he was the cornerstone of it: but this created the erroneous belief that there was a large body of medical opinion suspicious of MMR, rather than one maverick. The tabloids almost never mentioned him, but before we grab the moral high ground, it turns out that less than a third of broadsheet reports referred to the overwhelming evidence that MMR is safe, and only 11% mentioned that MMR is regarded as safe in the 90 other countries in which it is used. Meanwhile 32% mentioned Leo Blair.
But we digress. During 2002, things get really strange. In May, Wakefield “exclusively reveals” that “more than 95% of those who had the virus in their gut had MMR as their only documented exposure to measles.” But he doesn’t seem to reveal it in a peer-reviewed academic journal. It’s a tricky thing, to prove a negative, which is, after all, the key problem in the MMR disaster: but as far as I can tell he reveals this fact in a weekend colour supplement. Then in June he claims that O’Leary’s work showing some evidence of measles virus in another small sample of autistic children confirms his theory: O’Leary instantly released a statement saying it confirms nothing of the sort. People start popping up all over the place, claiming to have made some great finding, but never publish their research in proper, peer-reviewed, academic journals.
A pharmacist in Sunderland called Dr Paul Shattock was reported on the Today programme and in several national newspapers to have identified a distinct subgroup of children with autism resulting from MMR. He is very active on anti-immunisation websites. But he still doesn’t seem to have got round to publishing this important work, 18 months later, even after the Medical Research Council suggested he should “publish his research and come forward to the MRC with positive proposals”.
Dr Arthur Krigsman, paediatric gastrointestinal consultant at New York school of medicine, who you will see on the Channel Five debate after the drama, has been telling hearings in Washington for years that he has made all kinds of interesting findings in the bowels of autistic children. I am told you will also see Evan Harris MP, a scientist by training, rightly interrupt to stop him presenting this unpublished research.
Anyway, by June 2002 we’ve pretty much got to our destination. Justine Picardie does a photo feature on Wakefield, his house, and his family, for the Daily Telegraph Saturday Magazine. Andy is, she tells us, “a handsome, glossy-haired hero to families of autistic children”.
How are the family, Justine? “A likeable, lively family, the kind you would be happy to have as friends _ pitted against mysterious forces who have planted bugging devices and have stolen patients’ records in ‘apparently inexplicable’ burglaries.” Then we hit ground zero: she fantasises about a Hollywood depiction of Wakefield’s heroic struggle, with Russell Crowe playing the lead “opposite Julia Roberts as a feisty single mother fighting for justice for her child”.
MMR immunisation rates have now fallen to as little as 60% in some areas, and 84% nationally. Measles cases have almost trebled in six years, and it will get worse. I don’t want to be a scaremonger, but it’s relatively easy to spot drops in uptake of vaccines that happen immediately after major scare stories, or, perhaps, a major TV drama. The drop after next Monday’s drama will contribute to measles outbreaks, and that will cause distress, disability and probably deaths. That’s not the small risk of a small risk, like MMR and autism. It’s just simple maths.
Ben Goldacre is a doctor and writes the bad science column for Life
Monday December 15, 2003
I applaud Ben Goldacre’s efforts to highlight how much scientific evidence is available to prove the safety of the MMR vaccine and how much damage has been done to the public’s confidence in the vaccine by poor understanding of the science behind autism (Never mind the facts, Life, December 11). The threat of a measles epidemic grows ever larger and programmes such as Channel 5’s Hear The Silence only hasten the day when that tragedy occurs. I have an autistic son and yet did not hesitate to have my daughter vaccinated with the MMR vaccine. Even if there was a slight risk with MMR, then the risk is far outweighed by the very real risk of contracting measles.
As a parent agonising over the MMR booster decision, I’m prepared to consider Andrew Wakefield wrong. But Ben Goldacre seems to blame it all on the press. What influences parents to reject MMR is their personal experiences of autism and those of friends and acquaintances. This leads them to believe autism is increasing and is a serious form of brain damage. Medical establishment claims such as Goldacre’s that “autism is a disorder of communication” are seen as trivialisation, so doctors are trusted less and these personal experiences more. Claims that rising rates of autism are due to people “using the diagnosis more” are seen as a denial of the data. Goldacre symbolises the disconnect between medics and parents. His concern throughout is MMR. Parents’ concern is autism. Put aside who is right; the best way to deal with the hypothetical measles outbreak and to satisfy parents would be to find a non-MMR cause – and better still a cure – for autism.
I was heartened to read Ben Goldacre’s account of the controversy and that attention was drawn to the poor quality of media coverage. Following the publication of Wakefield’s first Lancet paper, a snowball of conjecture and innuendo has lead us to a wholly unacceptable scenario today where MMR immunisation rates have now fallen to 84% nationally. For this, the tabloid (and some of the broadsheet) press must be held responsible. Their offence is clear: anecdotal and unscientific data has been given credibility by the sheer volume of coverage, while evidence-based factual results refuting the claims have been swept under the carpet. Should this be a surprise to those of us attempting to uphold the integrity of science as a respected and trusted institution, when “80% [of articles in newspapers regarding MMR] were written by non-specialist reporters” between January and September 2002. Reporting the conclusions of such non-reproducible, subjective studies is as irresponsible and dangerous to public health as any potentially rogue element in vaccines.
Institute of Ophthalmology
Surely Ben Goldacre’s concerns should lie with the increasingly common practice of peer-reviewed journals such as the Lancet, in line with the current culture of evidence-based medicine, of publishing small-scale trials which may or may not later be shown to have any scientific validity. If we are to begin to encourage more accurate media reporting of scientific findings, we this is a fundamental issue.
Dalgety Bay, Fife
My friend and colleague, Paul Shattock, criticised by Dr Goldacre, is a pharmacist who has devoted a lifetime to the study of autism disorders and who has his own severely autistic child, now 28. Paul is pro- not anti-immunisation – but in a manner that is safe for the child.
At a Defeat Autism Now conference in May, Andrew Wakefield presented a comprehensive review of all his work, which has been replicated by Dr Krigman. The science was compelling and made all the links between the MMR vaccine and the severe enterocolitis, coupled with autism, identified in some children. The dilemma for parents is: will this severe consequence of vaccination happen to my child and is there any way of avoiding it? The work at Sunderland has, much to my surprise, profound implications for a number of chronic illnesses with which I am involved, including organophosphate poisoning, Gulf war syndrome, and ME-CFS.
Dr Goldacre should attend to the concern and experience of many parents. Epidemiology is no alternative to the careful study of sick children, which has been studiously avoided in this country for reasons that have never been made clear.
(Prof) Malcom Hooper
University of Sunderland
The MMR debate will only cease when there is sufficient statistical data one way or the other. It seems that now, when some 20% of children in this country are not receiving the MMR, but have had all the other vaccinations, is a good time to make such an analysis. Autism is usually evident from 12 to 18 months, so a proportion of those who have not been immunised in the last few years will by now be diagnosed as being on the autistic spectrum. Thus a comparison between those who have had the MMR and those who have not can be made. As a grandparent with six grandchildren, only one of whom had the MMR and developed a severe form of autism, maybe as a result of it, but maybe not, I would like to know the answer.
The following appeared in Corrections and Clarifications on the 16th December 2003:
The lead letters in yesterday’s paper addressed a recent feature on the MMR vaccine written by Ben Goldacre (Fears and frustrations over MMR, page 17). Unfortunately his first name appeared as Rob (once) and his second name as Oldacre (twice).