I told the truth all along, says doctor at heart of autism row
In his only interview before he appears in front of the General Medical Council to face serious charges of malpractice, the campaigner against the MMR vaccine tells Denis Campbell that he has no regrets
Sunday July 8, 2007
The Observer Flicking through some paperwork in an Italian restaurant in central London, Andrew Wakefield cuts an anonymous figure. Tall, wearing a deep green polo shirt, chinos and outdoor jacket against the rain, he could be an accountant checking figures. It is unlikely that the other mid-afternoon diners recognize a man who sparked one of the great public health controversies.
Wakefield is a hugely divisive figure. Nine years ago he claimed that the measles mumps rubella vaccine, or MMR, given to every baby in the country at 12-15 months, may cause autism. To many in the medical and political establishment he is a misguided, dangerous propagandist whose claims have caused unnecessary alarm among millions of parents and risked outbreaks of three diseases that remain potential killers. Some critics describe him as a crank, a publicity-lover, a peddler of spin, hype and pseudo-science. He has been attacked by the Chief Medical Officer, the then Health Secretary and Tony Blair.
Forced to leave Britain to practice in America because of the furor, Wakefield is now back. And unrepentant. Time, and the condemnation he faced, have deepened his suspicions about MMR. For the last few weeks he has spent long hours every day with his lawyers finalizing evidence he will give when he appears next week before the General Medical Council, the body which investigates alleged malpractice by doctors. He is facing a long list of serious charges relating to research he co-authored in 1998 that triggered the huge public uncertainty about MMR that endures today.
To supporters, Wakefield is a hero, a lone crusader for truth and a principled, caring doctor challenging a policy that is harming significant numbers of children. Some scientists, a handful of doctors and parents of sons and daughters they claim have been damaged by the triple vaccine see him as the victim of a Department of Health-led plot to discredit him, and the GMC hearing as a show trial designed to suppress an uncomfortable truth. Wakefield, talking to The Observer in his only interview before the hearing, says he plans to defend himself vigorously against allegations he sees as ill-conceived and malicious. 'I've done what I've done because my motivation is the suffering of children I've seen and the determination of devoted, articulate, rational parents to find out why part of them has been destroyed, why their child has been ruined. Why would I go through this process of professional isolation if it was simply to do with egomania? My alleged egomania doesn't explain things very well. There's been no upside for me in having pursued this issue. It's been very difficult.
'As Vaclav Havel once said: "Follow the man who seeks the truth; run from the man who has found it." I can't tell you that we know that the MMR vaccine causes autism. But the Department of Health can tell you with 100 per cent certainty that it doesn't, and they believe that, and that concerns me greatly.'
The MMR controversy began on 26 February, 1998 when a group of doctors at the Royal Free Hospital in north London, including Wakefield, held a press conference to publicise a research paper they had just published in the medical journal The Lancet.
Journalists asked about the authors' main claim to have discovered, in a study of 12 children, a new form of inflammatory bowel disease, which they linked to the MMR vaccine. The doctors outlined their theory that in some children the combination vaccine damaged the immune system because they could not cope with simultaneously receiving a tiny dose of three separate diseases, leaving them susceptible to illness.
The five doctors were asked if, given the findings, parents should continue having their children vaccinated with the three-in-one jab. Roy Pounder, professor of medicine at the Royal Free, passed the question to Wakefield. The gastro-enterologist replied that the potential link between gut disorders, autism and MMR vaccination could no longer be ignored. 'It's a moral issue, and I can't support the continued use of these three vaccines given in combination until this issue has been resolved,' he said.
Several co-authors disagreed, as did the Department of Health, which was furious. But, fuelled by huge publicity, Wakefield's remarks led to large numbers of parents then, since and today enduring anxious hours wondering what to do: follow the NHS advice and get their babies the MMR jab or opt for single vaccines - argued by some to be safer - privately instead.
MMR safety will be back in the news on 16 July when the GMC Fitness to Practice Panel begins disciplinary proceedings against Wakefield and two of his Lancet co-authors, Professor John Walker-Smith and Professor Simon Murch. The charges of serious professional misconduct in the way they conducted the disputed study are very grave. If upheld, all face being struck off.
They include allegations that the three undertook research with the 12 children without proper approval from the Royal Free's ethics committee, failed to conduct their study along the lines they had sought ethical approval for, and did not treat their young patients in accordance with the ethical approval given. The trio are accused of carrying out procedures on children in the study, such as lumbar punctures and colonoscopies, that were not in the best interests of the health of some seriously ill young people.
According to the charge papers, the GMC will also hear claims that Wakefield and Walker-Smith 'acted dishonestly and irresponsibly' in failing to tell The Lancet how they had recruited the patients, and that the pair also acted irresponsibly when they gave one child 'a purportedly therapeutic substance for experimental reasons prior to obtaining information about the safety of the substance'.
Wakefield himself is further accused of being 'dishonest and misleading' when he obtained research funds from the Legal Aid Board, of ordering investigations to be carried out on some children even though he did not have the pediatric qualifications to do so, and that he took blood from children at a birthday party to use for research purposes after offering them money.
Wakefield explains that legal advice and his desire not to turn the GMC panel against him, mean he is unable to respond directly to the allegations. But friends say that he views the GMC hearing as part of a long-running 'Stalinist' campaign to ruin his reputation. He and his co-accused deny all the claims.
Wakefield told The Observer that he has no regrets for saying what he did in 1998 nor for continuing to seek to prove his view of MMR as the likeliest explanation for the rise in cases of autism in Britain. Almost every child health expert, though, regards the jab as hugely beneficial to public health and rules out any connection between it and autism.
'My concern is that it's biologically plausible that the MMR vaccine causes or contributes to the disease in many children, and that nothing in the science so far dissuades me from the continued need to pursue that question', Wakefield said. 'The trend in autism has gone up sharply in many countries. It's interesting that that increase coincides in many places with the introduction of the MMR vaccine. That doesn't make it the cause. But it's an observation that needs to be explained, because there was clearly some environmental change at that time that led to growing numbers of children becoming autistic. It's a legitimate question if MMR is one of those factors. I fear that it may be.'
His notoriety means he is effectively an exile in America, where he is now the executive director of research at Thoughtful House, a non-profit-making school and clinic in Austin, Texas, which treats children with autism from all over the world.
'The hypothesis that we have been pursuing for some years is that the vaccines in some way may interact to increase the risk of the measles element in the MMR jab damaging the intestine, and possibly the brain directly, or alternatively that the intestinal disease leads to secondary immune injury to the developing brain.'
As the Havel quote suggests, Wakefield sees himself as a dogged seeker after a disturbing truth. He compares himself to the small band of doctors who, soon after Aids emerged in the Eighties, pinpointed a previously unknown virus (HIV) as the cause, only for their theory to take years to become established.
'In the Thatcher-Reagan era, Aids was originally seen as something politically unacceptable, as an act of God or a gay plague - as anything but our problem. People were stigmatized,' he said. 'We are looking at something with autism which is similarly politically unacceptable. That is, how could one of medicine's modern miracles possibly be associated with damage to children? Because if it's shown to be linked, then it becomes less of a miracle and more of a potential scandal.' He believes that the Department of Health introduced MMR into the UK in 1988 to save money and that he has been persecuted for daring to take on powerful political and drug industry interests.
Professor David Elliman, of Great Ormond Street Children's Hospital in London, is one of Wakefield's chief critics. In his view a growing public distrust of health professionals, caused by a series of medical scandals, has helped create a climate in which Wakefield is seen by some as a David taking on the Goliath of a medical establishment.
'Some people are susceptible to conspiracy theories,' he said. 'Media coverage of the MMR row, which gave both sides equal say, gave the public the misleading impression that Wakefield represented a significant body of opinion. Yet there isn't a 50-50 split on this. It's 99.9 per cent to point one [of a per cent].'
The science author and broadcaster Vivienne Parry, a member of the government's independent advisory panel, the Joint Committee on Vaccination and Immunization, speaks for the large majority of scientific and medical opinion when she says: 'I think Wakefield is wrong about MMR. He has caused great alarm and distress. But the demonization of him has made some people think he's being hounded by a vengeful establishment, which has given him a certain amount of credibility with those who believe that all mavericks are right.'
Autism baffles science. Unlike diseases - and autism is a neurological condition, not a disease - few experts would claim to know exactly what causes it, much less treat it. Some blame genetic factors, others put the increase in those classed as being autistic down to better diagnosis, and others believe MMR is responsible.
Professor Simon Baron-Cohen, co-director of the Autism Research Centre at Cambridge University, is the UK's leading expert on the lifelong, so far incurable, condition, which is estimated to affect 588,000 people, about one in 100 Britons. But even he is not precise: 'The main causes of autism are likely to be genetic, though interacting with some as yet unknown environmental factors.'
The National Autistic Society is similarly vague. 'The causes of autism are still being investigated. Many experts believe that the pattern of behavior from which autism is diagnosed may not result from a single cause,' it has said in a statement. Sufferers have trouble forming relationships, encounter difficulties in communicating in verbal or written form, and often develop obsessional interests.
Interestingly, the charity does not adhere to the medical consensus which categorically rejects any link between MMR and autism. 'The NAS is keenly aware of the understandable concerns of parents surrounding suggested links between autism and the MMR vaccine,' says a spokeswoman.
Experts disagree on whether reported increases in the number of children with autism in the UK and elsewhere represent 'real' rises or better diagnosis. Wakefield is now a key figure in a growing world network of organizations, medical professionals, treatment centers, activist groups and campaigning parents which insists the rise is real and that the triple jab is the reason.
Pressure is building for fresh studies of possible links and in-depth examination of children apparently adversely affected by vaccines. The US Court of Federal Claims recently began hearing a case which could lead to compensation being paid to 4,800 families who have filed lawsuits claiming that their children ended up suffering from autism, inflammatory bowel disease, glaucoma and epilepsy after receiving the MMR jab and other childhood vaccinations.
Critics point out that the US court case is not about the MMR vaccine itself but centers on the use of a preservative called thimerosal, which contains 50 per cent mercury and until a few years ago was added to routine vaccinations given to children in the US under one. Crucially, it has never been an element of the MMR vaccine here.
In Japan the MMR jab became mandatory in 1989, but was withdrawn in 1993 after doctors warned of side-effects. There were more than 2,000 claims that it triggered reactions such as meningitis and encephalitis, an inflammation of the brain, and even caused deaths. Families of children who had died received £80,000 each in damages.
'America is like the UK in that many children are affected by autism, but over there there's a powerful drive to get to the truth, an inherent mistrust of the healthcare bureaucracy, and a can-do attitude among intelligent and articulate parents,' says Wakefield. He predicts that 'the truth' about MMR will eventually come from America, not the UK.
Before Wakefield's warning, 91.5 per cent of children in England had the MMR jab by the time they turned two. After he hit the headlines immunization rates fell to 87.4 per cent. Public distrust in the vaccine was enhanced when Tony Blair refused to say whether his son Leo had had the jab and rumors swirled that the Blairs had traveled to France to have the single jabs privately. The vaccination rate subsequently fell to 79.9 per cent. The World Health Organization says 95 per cent is necessary to ensure what medical experts call 'herd immunity' - that enough children have had MMR to ensure that they neither get the three illnesses nor pass them on to others.
Dr Natasha Crowcroft, a childhood immunization expert at the Health Protection Agency, said: 'There have been outbreaks of measles in places like nurseries. The fear is that children who weren't vaccinated following Wakefield's comments are now approaching secondary school age and may well get measles, for example on holiday in Thailand or even in Italy, where it's common.'
MMR's defenders admit that significant numbers of parents are still apprehensive. 'Confidence was shaken,' concedes Crowcroft. But parental fear seems to be gradually subsiding. MMR uptake has been increasing since 2003; by last year 84.1 per cent of two year olds in England had had it. Gordon Brown last year said that his son, John, two had the triple jab and made clear he saw it as a matter of parents' responsibility to ensure their child was covered.
Although Wakefield will be on trial at the GMC, the hearing could prove uncomfortable for those that make decisions about health. An editorial in the New Scientist magazine has expressed alarm over the implications of the GMC's action for health professionals' freedom to raise questions about possible safety flaws. 'The notion that he should have kept quiet is ludicrous: there are too many cases where doctors' concerns have proved correct, such as their fears over the impact of antidepressant drugs on children.'
MMR's defenders do not pretend it is always 100 per cent safe. JCVI member Vivienne Parry admits: 'There's a risk with all vaccines. It's a very small risk. No one has ever said that the MMR vaccine, or any vaccine, is completely without side-effects. But as a society we have to decide whether the benefits outweigh the risks. If we had measles, it would kill lots of children. If you have a vaccine, it will damage some children, but a very small number.' Parry believes the near-disappearance of measles, mumps and rubella in recent times means they no longer hold any horror for most people, and that helps explain the questioning attitude to MMR.
In the Italian restaurant, Wakefield fires a parting shot before another meeting with his lawyers. 'I'm determined to continue to do this work, regardless of the personal cost. It has to be done. Because the parents of these children deserve an answer, and their children deserve help and they can be helped', he says. 'My colleagues and I won't be deflected by the interests of public health policymakers and pharmaceuticals. I want to help children with autism; they are my motivation. If the work ultimately exonerates the vaccines, that's fine. If not, we need to think again.'
