MMR: Fact and fiction
How television made a melodrama out of the UK's vaccination crisis.
On Monday 15 December, Channel 5 is due to screen Hear the Silence, a drama featuring Juliet Stevenson as the campaigning mother of an autistic child, and Hugh Bonneville as Dr Andrew Wakefield, leading advocate of the link between the MMR vaccine and autism.
The drama will be followed by a debate – pre-recorded last week – in which Dr Wakefield and his supporters face critics of the anti-MMR campaign, including myself. Although this debate was boycotted by all the leading experts in the fields of child and public health, immunisation and autism, Evan Harris (Liberal Democrat MP), Gini Bartlett (from the rubella charity Sense) and Tammy Spears (co-author of the Cardiff journalism school study on MMR) helped to ensure that the Wakefield case was not conceded by default.
There is a scene in the film The Truman Show in which Christof (Ed Harris), the creator and controller of the show, momentarily forgets that he is directing a TV soap and appeals to the ‘crew’ of a ferry to put their boat to sea to prevent Truman (Jim Carrey) from escaping from the set by yacht. ‘The bottom line here is they can’t drive a boat’, an exasperated stage manager yells back at Christof, ‘they’re actors’.
I recalled this scene when I heard Juliet Stevenson pontificating on the MMR controversy last week (on radio and in the press, as well as in the post-Hear the Silence debate). Ms Stevenson is a fine actress, but playing a part in a drama about MMR and autism does not make her an authority on this subject in real life. (She has also played the part of scientist Rosalind Franklin, who died before her contribution to the elucidation of the structure of DNA was widely recognised: can we now expect to hear Ms Stevenson’s opinions on x-ray crystallography?)
The fact that Ms Stevenson is also a mother qualifies her to speak on her experience as a mother – and no doubt there are many magazines that would be eager to record her views. But being a mother does not make you an expert on immunisation policy. Nevertheless, her condemnation of government policy on MMR as ‘a sort of hysteria’ and her insistence that ‘you just can’t go on telling frightened people that they are wrong’ have been widely reported (1).
But if people believe that boycotting the single MMR vaccine in favour of three separate vaccines for measles, mumps and rubella is a sound immunisation policy, they are seriously mistaken, and it is the responsibility of the government and the medical profession to tell them so. (The conviction that they are mistaken is not only held by the government, but by virtually everybody who knows anything about the subject. The contrary view is held only by Dr Wakefield and his handful of supporters – and by a few doctors who are shamefully profiting from the scare by selling separate vaccines.)
At a recent spiked-seminar on MMR, the TV doctor David Bull suggested that, though he thought MMR was best, if people did not accept the official policy then the government should give them what they wanted – even if it was an inferior option. A woman who described herself as ‘a medical student with two MMR-age children’, disagreed. ‘If the government tells people the truth and they don’t accept it, then it should keep telling them the truth, instead of just telling them what they want to hear’, she said. The truth is that an effective national immunisation policy cannot be organised on a ‘pick-and-mix’ basis. Any attempt to do this would inevitably result in reduced vaccine uptake and, in time, an increased incidence of serious diseases.
It is quite understandable that Ms Stevenson is not well acquainted with the complexities of immunisation policy (I know nothing about acting either). If she finds it patronising to be told the truth, then that is her problem: her wounded ego is a price worth paying to safeguard children’s health. It would be far worse than patronising to indulge such irrational demands and introduce an immunisation policy that would put children’s health at risk.
In the studio debate following Hear the Silence, Ms Stevenson was joined by Rosemary Kessick, mother of a 15-year-old autistic son William, and a leading figure in the anti-MMR campaign. The close correspondence between the story told in Hear the Silence and her personal account (reported in the Private Eye anti-MMR campaign special in May 2002) suggests that the film is at least partly based on her experience (Kathleen Yazbak and her son Theo are another source) (2). The affluent middle-class lifestyle of the family in the film is an accurate reflection of the socially exclusive character of the campaign.
Being the parent of autistic child – as I am – qualifies you to speak authoritatively on the experience of being the parent of an autistic child. It does not give you any privileged insight into the aetiology, epidemiology or any other aspect of the condition. Yet Mrs Kessick and other parents are ready to make public statements on matters that are well beyond their sphere of competence in a way that is likely to undermine public confidence in immunisation policy. As I commented in the studio discussion, the fact that as parents, we have experienced the tragedy of autism in our families, does not give us a license to promote a scare that may have the consequence of visiting similar tragedies on other families.
As the mother of an autistic son, Mrs Kessick says that she is not impressed by scientific arguments that involve statistics. (She does not however object to the use of statistics if these appear to support her belief that there is an ‘autism epidemic’ – a key conviction of the anti-MMR campaign.) In common with other campaigners, she rejects the (numerous) epidemiological studies that have failed to demonstrate any link between MMR and autism. Instead of epidemiological studies, which look at populations, she demands ‘clinical’ research into those individual children whose parents claim that MMR rendered them autistic.
But if it is suggested that MMR – a vaccine that was administered to more than 90 percent of children in the early 1990s – is responsible for causing an increased incidence of autism among these children, then the statistical methods of epidemiology are the most appropriate for investigating this hypothesis. Indeed, epidemiology has been very successful at exploring such links – for example, that hypothesised between high levels of cigarette smoking and lung cancer in the 1950s. It has also yielded impressive results in detecting rare adverse reactions to immunisations – such as the appearance of a rash associated with a blood abnormality (‘idiopathic thrombocytopenic purpura’, ITP) – which follows MMR at a rate of 1 in 32,000, and is usually followed by complete recovery (3). The fact that, in different studies in different countries, such methods have failed to detect any link between MMR and autism is strong evidence that it does not exist.
Epidemiological and clinical studies are complementary: populations are, after all, made up of individuals. Reports of individual cases, or small numbers of cases (such as the series of 12 in Dr Wakefield’s February 1998 paper in the Lancet that launched the current controversy) may be useful in revealing a new problem, such as the adverse effects of drugs. But in the vast majority of cases, on more rigorous investigation such preliminary and provisional findings turn out to be wrong.
According to Professor David Sackett, founder of ‘evidence-based medicine’, the problem with studies based on case reports is that ‘their methods do not permit discrimination of the valid from the interesting but erroneous’ (4). Hence, ‘they cannot provide, by themselves, a sound basis for clinical action’. This is why case reports occupy the lowest place in the hierarchy of evidence now widely used in medical practice (followed, in ascending order, by cross-sectional studies, cohort studies, randomised controlled trials with non-definitive results, randomised controlled trials with definitive results and systematic reviews and meta-analyses) (5).
The problem facing the campaign against MMR is not only that epidemiological studies have failed to demonstrate any link with autism. (Such studies ultimately face the limitation that it is impossible to prove a negative: that MMR never causes autism.) It is also that in not a single child has it been established that MMR played a role in causing their autism. Nor can this be attributed to a lack of effort to establish such a link. The recent decision of the Legal Services Commission to withdraw legal aid from the 1000 families pursuing litigation over MMR was made after solicitors had spent some £15million attempting to produce evidence that MMR caused autism – in a small number of cases agreed between the parents and the vaccine manufacturers – and failed.
In his contribution to the Hear the Silence debate, Dr Wakefield reiterated a number of points that are made in the film itself. He said that his recognition of the MMR-autism link began from ‘listening to parents’ of autistic children. Dr Wakefield did not mention the fact that his early (and now discredited) work claiming a link between measles (and measles vaccination) and inflammatory bowel disease had been widely publicised long before the Lancet paper made him a household name. For example, it featured prominently (together with a photo of a youthful ‘Andy’ Wakefield) in a strongly anti-immunisation article in the Sunday Times magazine in December 1995, an article that also raised the suggestion that MMR might cause autism (6). It seems highly likely that the parents he listened to in 1996 and 1997 had sought referral to his clinic because of his already publicised views (Mrs Kessick explains this process in the Private Eye special). Dr Wakefield’s listening seems to be restricted to those who confirm his own views.
Dr Wakefield also repeated his claims that his MMR-autism hypothesis has been substantiated by research published by himself and others. He could not explain why these claims have been rejected by numerous authoritative bodies – including the UK Medical Research Council (in different forms on three separate occasions), the US Institute of Medicine and the US Academy of Pediatrics (to name only the most rigorous) (7). All these bodies sought submissions from Dr Wakefield and his colleagues and assembled leading authorities in the relevant fields to evaluate the evidence. All categorically rejected the MMR-autism thesis. Though Dr Wakefield and his theories appear very impressive to actresses, parents and journalists with no specialist scientific knowledge, they have been found unimpressive by all the expert bodies that have studied them.
To support Dr Wakefield in the post-Hear the Silence debate, Channel 5 flew over two American allies, Dr Jeff Bradstreet, who runs the private research centre in Florida where Dr Wakefield is now employed, and Dr Arthur Krigsman, a gastroenterologist in private practice in New York. Despite prior reassurances that they would not use this public debate to present unpublished and unverifiable data (as Dr Krigsman has done in the past), they proceeded to do exactly this. Professor John O’Leary, from Dublin, who last year twice rejected claims made by Dr Wakefield that his researches supported the MMR-autism theory, turned down an invitation to attend.
I put it to Dr Wakefield that he had shifted his position from arguing that MMR was responsible for an epidemic of autism to claiming that it was responsible for only a subset of cases too small to detect by epidemiological methods. He interrupted to deny that he had ever claimed that MMR caused the autism epidemic. Yet, in his testimony to the US House of Representatives on 25 April 2001, Dr Wakefield said that: ‘it is my impression that the trend in autism incidence is wholly consistent with a causal relationship with the MMR vaccine at the population level.’ (8) He did not explain why this causal relationship at the population level could not be detected.
Dr Wakefield’s trump card was to quote from a study produced by Dr Tom Jefferson of the Cochrane Collaboration in Oxford, which is critical of the methods used by most of the surveys used to demonstrate the safety of MMR (9). At one stage he left the platform to retrieve the paper from his bag so that he could read it to the audience. This marks a return to a tactic deployed by Dr Wakefield in January 2001, when he responded to the growing weight of evidence against his MMR-autism theory by questioning whether appropriate safety procedures had been followed when MMR was introduced into Britain in the late 1980s. His paper ‘MMR vaccine: through a glass, darkly’ provoked a storm of controversy (10). The title, from the epistles of St Paul, hinted at divine revelation: ‘For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as I am known’ (Corinthians I;13:12).
The most curious feature of this approach is that it has no direct relevance to the MMR-autism link. Even if it were true that pre-licensing surveillance of MMR – and all subsequent safety studies – were inadequate, this would not advance Dr Wakefield’s claim that MMR causes ‘autistic enterocolitis’ and thus contributes to an epidemic of autism. The strategy seems to be that, if the safety of MMR in general can be put in doubt, the credibility of any particular risk attributed to the vaccine is raised. This strategy – and the close links between the anti-MMR campaign and the wider anti-vaccination organisations – suggest that the protestations of Dr Wakefield’s supporters that they are not ‘anti-immunisation’ are disingenuous.
It is now nearly six years since Dr Wakefield first publicised his MMR-autism thesis. Over this period he has on several occasions announced that new research would soon vindicate his hypothesis; each occasion has turned out to be a false dawn. In March 2002 he announced in Scotland that ‘there will be a definitive answer on autism and MMR this year’ (11). Nearly two years later the cheque is still in the post, and Dr Wakefield is still claiming that his day of vindication is nigh.
Towards the close of the TV debate, Evan Harris asked anti-MMR campaigners whether there was any scientific evidence they would accept as disproving the MMR-autism thesis. The question remained unanswered, indicating that this campaign has long passed beyond the reach of rational argument. The arrival of Dr Wakefield surrounded by a group of men in dark suits and a coterie of admiring middle-aged women confirmed that the campaign has acquired the aura of a fundamentalist cult.
This is most apparent in its dogmatic advocacy of the MMR-autism thesis in the face of the weight of scientific evidence against it – and in the notion that Dr Wakefield has been persecuted by the medical establishment, when in fact his senior colleagues refused to support further research into his increasingly implausible and incoherent hypotheses. It is also expressed in Dr Wakefield’s tendency towards paranoia, which is reflected in the film’s suggestion that his phone was bugged by (unidentified) sinister anti-Wakefield forces. Wakefield also offered a conspiratorial explanation – on the Radio Four Today programme – of the recent letter written by his former Royal Free colleague Dr Simon Murch to the Lancet (in which Murch categorically rejected the MMR link) (12).
The anti-MMR campaign is intolerant of critics and unbelievers and its supporters have a marked tendency to descend into personal abuse of their opponents. In response to the 1999 study by Brent Taylor, Elizabeth Miller, Paddy Farrington and others, that challenged the MMR-autism thesis, Rosemary Kessick’s group ‘Allergy induced Autism’ (AiA) accused the authors of ‘a cynical attempt to disguise the truth’ and of perpetrating ‘a scandalous public dupe of BSE proportions’ (13). It demanded the resignation of ‘all key members of the study group’, insisting that such an ‘attempt to justify health policy by using inadequate research as propaganda is reprehensible’.
Dr Wakefield made similar criticisms of the Taylor study in a slightly more restrained letter to the Lancet. Yet this study was described by the US Institute of Medicine’s immunisation safety review as ‘the most extensive epidemiological study and the strongest published evidence against the hypothesis that MMR causes autistic spectrum disorder’ (14). The anti-MMR campaign has repeatedly smeared its critics either as stooges of the medical establishment or as lackeys of the vaccine manufacturers (themes which recur in Hear the Silence).
While posing as victims of persecution, the anti-MMR campaigners have proved very effective in intimidating their opponents. Dr Wakefield is a skilful media performer, with good press contacts, and he enjoys the backing of an elite PR company, Abel Hadden (whose clients include Margaret Thatcher and the Sultan of Brunei). No doubt many of the boycotters of the Channel 5 debate had good reasons for refusing to appear, but a reluctance to face the abusive and confrontational style of the anti-MMR campaign was, at least for some, an important factor.
Although Dr Murch was prepared to distance himself from Dr Wakefield in a letter, he declined to participate in the debate – despite the fact that he is gratuitously smeared in the film. Another signatory of the original Lancet paper is reported to have written to Channel 5 to request that the film be withdrawn – but he refused even to have his name mentioned in the report and declined to join the debate (15). (Another signatory – the neurologist Dr Peter Harvey – attended to support Dr Wakefield, though his Sir Lancelot Spratt style and his slighting reference to autistic children cannot have endeared him to the anti-MMR campaign.) The (unfortunate) absence of any autism expert – or even any representative of the National Autistic Society – from the debate is a result of the acrimonious climate engendered in the world of autism by the activities of the anti-MMR campaign.
At one point in the debate, Hear the Silence writer Tim Prager gets irritated by the raised voices and emotions of critics of the film. In truth, we envy his capacity for cool detachment – this is not a luxury we can enjoy. He – and the Channel 5 executives – can indulge themselves in turning junk science into drama and then move on to some other project, or perhaps simply return to soft porn and sport. But we will have to live with the consequences of their ill-informed and irresponsible foray into the lives of families facing decisions about immunisation and families affected by autism.
These consequences may yet include the effects of new outbreaks of measles, mumps and rubella. But some families are already living with the consequences of the campaign against MMR. In September 2003, two cases of measles encephalitis were reported in children who could not receive MMR because they were taking immunosuppressant drugs following kidney transplants; these occurred in an area of south London with a perilously low level of MMR uptake (16). While some families of autistic children have been dragged into the futile (now halted) litigation, many more are suffering an entirely unwarranted burden of guilt over MMR.
The campaign against MMR has a distorted perception of reality. Hear the Silence claims to give a voice to campaigners who believe that their case has been suppressed. Yet in reality, the Wakefield case has received enormous, and largely sympathetic, coverage in the press and on TV over the past five years. The voices that have not been heard are those of people like Gini Bartlett, whose adult son suffers multiple handicaps as a result of congenital rubella syndrome. Despite the valiant efforts of Sense, the public has heard little of the problems affecting such families and of their fears that this syndrome, after virtually disappearing, may make a comeback. While the public has heard the strident voices of a small minority of middle-class parents of children with autism, the quieter voices and the pressing concerns of the vast majority have been ignored.
Dr Michael Fitzpatrick is the author of MMR and Autism, Routledge, 2004 (buy this book from Amazon (UK) or Amazon (USA)); and The Tyranny of Health: Doctors and the Regulation of Lifestyle, Routledge, 2000 (buy this book from Amazon UK or Amazon USA). He is also a contributor to Alternative Medicine: Should We Swallow It? Hodder Murray, 2002 (buy this book from Amazon (UK) or Amazon (USA)).
Hear the Silence, by Dr Michael Fitzpatrick
Hear the Silence, by Dr Michael Fitzpatrick, in the British Medical Journal
TV UK, 18 December, by Dolan Cummings
(1) Guardian, 3 December 2003
(2) ‘MMR: the story so far,’ H Mills, Private Eye Special Report, May 2002; Evening Standard, 2 December 2003
(3) Childhood Immunisation: The facts, H Bedford, D Elliman, London: Health Promotion England, 2001 p114
(4) Clinical Epidemiology: A Basic Science for Clinical Medicine, Second Edition, DL Sackett, RB Haynes, GH Guyatt, P Tugwell, Boston, London, Toronto: Little, Brown, 1991, p361
(5) How to Read a Paper: The basics of evidence-based medicine, second edition, T Greenhalgh, London: BMJ 2001, p54.
(6) ‘A shot in the dark’, Y Roberts, Sunday Times Magazine, 17 December 1995
(7) Medical Research Council (1998) ‘Group concluded no reason for change in MMR vaccine policy’, Press Release Ref: 09/98, London: MRC; Medical Research Council (2000) ‘Report of the strategy development group subgroup on research into inflammatory bowel disease and autism’, March; Medical Research Council (2001) Review of Autism Research: Epidemiology and Causes, December, London: MRC; Halsey et al (2001) ‘MMR vaccine and autistic spectrum disorder: a report from the new challenges in childhood immunisation conference’, Pediatrics; 107 (5): e84; Institute of Medicine (2001) Immunisation Safety Review: Measles-Mumps-Rubella vaccine and autism, Washington, DC: National Academy of Sciences
(8) See the testimony of Dr Andrew J Wakefield before the Government Reform Committee of the US House of Representatives
(9) ‘Methodological problems in the interpretation of adverse event data included in a systematic review of adverse events following MMR immunisation’, 4th Symposium on Systematic Reviews: Pushing the Boundaries, D Price, T Jefferson, Oxford, July 2002
(10) ‘MMR vaccine: through a glass darkly’, AJ Wakefield, SM Montgomery, Adverse Drug Reactions and Toxicology Reviews 2000; 19: 265-83
(11) Scotsman, 18 March 2003
(12) ‘Separating inflammation from speculation in autism’, S Murch, (Correspondence), Lancet 2003; 362:1498-99.
(13) Taylor, B., Miller, E., Farrington, C.P., Petropoulos, M-C., Favot-Mayaud, I., Li, J., Waight, P.A. (1999) ‘Autism and MMR vaccine: no epidemiological evidence for a causal association’, Lancet; 353: 2026-29. Allergy Induced Autism (1999) Statement on Taylor et al (1999)
(14) Medical Research Council (1998) ‘Group concluded no reason for change in MMR vaccine policy’, Press Release Ref: 09/98, London: MRC; Medical Research Council (2000) ‘Report of the strategy development group subgroup on research into inflammatory bowel disease and autism’, March; Medical Research Council (2001) Review of Autism Research: Epidemiology and Causes, December, London: MRC; Halsey et al (2001) ‘MMR vaccine and autistic spectrum disorder: a report from the new challenges in childhood immunisation conference’, Pediatrics; 107 (5): e84; Institute of Medicine (2001) Immunisation Safety Review: Measles-Mumps-Rubella vaccine and autism, Washington, DC: National Academy of Sciences
(15) Guardian, 3 December 2003
(16) Measles-associated encephalitis in children with renal transplants: a predictable effect of waning herd immunity?’, IM Kidd, CJ Booth, SPA Rigden, CYW Tong, EME MacMahon, Lancet 2003; 362: 832 (6 September)
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