VILIFED by the MMR zealots
MAIL ON SUNDAY
15 October 2006
In a powerful first ever interview the wife of persecuted MMR doctor Andy Wakefield fires back at those who tried to ruin her husband’s reputation
By Sue Corrigan
There can’t be many married couples who spend hours on the phone, thousands of miles apart, earnestly discussing inflammatory bowel disease, medical research in Venezuela or laboratory studies on rats’ brains. But Andrew and Carmel Wakefield do. Carmel’s defiance is the only reason why the British Government and medical authorities have so far failed to silence her husband despite driving him into professional exile in America, separating him from his family in London and destroying his reputation.
A doctor herself, 49-year-old Carmel is the secret weapon of Andrew, the man many in Britain’s medical establishment regard as Public Enemy No 1; the villain or hero, depending on your point of view, of the eight year controversy over whether the MMR triple jab, given to toddlers to protect against measles, mumps and rubella, is capable of causing autism, other types of brain damage and a painful new form of gut disease. Since the story broke in 1998, Carmel has kept out of sight, refusing repeated interview requests and declining to be photographed. Only now, with her family preparing a permanent move to America, does she finally feel ready to open fire on her husband’s enemies. ‘Something is causing an appalling worldwide epidemic of autism and the new form of inflammatory bowel disease which Andy and his colleagues at the Royal Free Hospital in London first identified about ten years ago. Yet all that we ever hear from the authorities is, “It’s not MMR,”’ she says, packing up the last of her belongings in her West London home.
‘Oddly, though, they don’t seem in the least concerned about finding out what the actual causes might be. It is impossible for the authorities to rule out fears of a link between this vaccine, autistic disorders and bowel disease because they have not yet done the detailed clinical studies that Andy and others have, for many years, been pleading for. ‘Why have they not, when, obviously, that is the only way to settle this controversy once and for all?’ Andrew and Carmel met in the late Seventies while training at St Mary’s Hospital, Paddington. Medicine ran in both families: both have parents who were doctors and brothers who later went into the profession. ‘Andy was training to be a surgeon and I pursued a career in general medicine, but later went into clinical negligence litigation,’ says Carmel. ‘Andy loved being a surgeon but after we had our children [three boys and a girl], he decided he would go into clinical research, because he thought it meant he could spend more time with his family.’ She sighs: ‘How ironic is that?’ Carmel says her husband first began privately expressing fears about the impact of the measles virus on the gut years before he made his concerns public.
‘Andy is a very talented researcher,’ she says proudly. ‘He has an ability to think outside the box. In the early Nineties he made some important discoveries about the causes of inflammatory bowel disease and it was this that led him to look at the measles virus, which is known to linger in the bowel. ‘That was how he first became interested in measles in general, and then to worry about its impact on the gut, particularly when injected into young children as part of a triple vaccine of three live viruses. ‘He started voicing his concerns to the Department of Health in 1992, assuming they’d order urgent clinical research. He assumed public safety would be of paramount concern to health officials. ‘He thought they’d want to rule out any possibility that MMR could cause gut damage, particularly as worrying evidence was starting to emerge that the live mumps and measles viruses in the vaccine could interact to suppress the body’s natural immune response. But no one wanted to know. He met with a complete brick wall.’ MMR was hastily introduced in Britain in late 1988, after only the most cursory UK safety trials, at the personal urging of the Conservative Health Minister Edwina Currie. Until then, British health officials were content to continue offering all children a single measles jab, with the rubella vaccine given only to pre-pubescent girls to prevent damage to unborn children, and mumps considered not worth vaccinating against. But after a visit to America, where she was shown data on MMR’s effectiveness in reducing measles over the previous decade, Mrs Currie says she ‘insisted’ departmental officials introduce the triple vaccine without delay. She still counts it as her proudest achievement as Health Minister.
‘I told them to stop dragging their feet and get on with it,’ Mrs Currie told The Mail on Sunday. ‘They didn’t need to conduct lengthy UK safety trials. The vaccine’s safety record had been clearly demonstrated by North American experience, as far as I was concerned. ‘Before MMR, children were dying from measles in the UK at the rate of around one a month. We introduced financial incentives for GPs to encourage its uptake, and the death rate from measles subsequently fell to zero. That Andrew Wakefield is a wicked, wicked man for attempting to undermine public confidence in MMR. If any child dies from measles, he will have blood on his hands. MMR has been used in various countries for around 30 years, its safety has been exhaustively researched, and its record is exemplary.’
Not everyone shared her confidence – Carmel Wakefield, for one. She remembers very clearly the day in 1997 her husband warned her, shortly before the Lancet medical journal published one of the hundreds of academic papers to his name, that ‘there could be a bit of a problem with this one. This could be rather unpopular’. Familiar with the paper’s content, she thought he was being melodramatic. ‘I said to Andy,” Why would there be any problem? All you’re doing is reporting medical histories and clinical findings in a group of children. I know some parents are raising concerns about a vaccine, but you’re just saying more research is needed. What’s the problem with that?” ‘Obviously,’ she says now, ‘I was very naive.’ Published in February 1998, the paper sparked worldwide alarm by reporting parents’ claims that, soon after being injected with MMR – the triple vaccine introduced in the UK ten years previously – their children developed serious gut problems and then signs of brain damage. The problem, as the Wakefields were quickly to learn, was that only the very bravest or most foolhardy of medical researchers would ever dare publicly express doubts about any childhood vaccine, let alone raise the spectre that it might cause something as serious as autism. Presented as an ‘early case report’, the paper primarily described an apparently new form of bowel disease in 12 previously healthy children who had all subsequently, and puzzlingly, developed signs of brain damage, including autism. It speculated that the bowel disease appeared to be the result of some form of viral infection. And, mentioning that the parents of several children ascribed their children’s problems to MMR, it called for further urgent research.
But Wakefield’s critics responded furiously that the Lancet paper was highly irresponsible to even mention the claims of a few ‘mere’ parents, without any proof of a causal link. Autism, they say, is a genetic disorder, present from birth but often not picked up until children are about 18 months old. And the bowel disease named by Wakefield as ‘autistic enterocolitis’ simply did not even exist. Only recently, in the light of a number of overseas studies confirming this new disease, have they grudgingly begun to concede that actually, it may. They still vehemently deny any link with MMR though, pointing to numerous large scale studies that conclude there is none. Wakefield’s supporters retort such studies are not sensitive enough to pick up damage in a relatively small percentage of children, and continue to beg British medical authorities to investigate individuals who have allegedly been damaged – so far without success. Indeed, hundreds of parents across Britain now say that the mere mention of bowel disease in their autistic children guarantees they’ll be immediately turned away by doctors and refused any help or treatment.
‘It is as though any kind of association with Andy’s work causes doctors here to run a mile’, says Carmel. ‘Andy has photographs of children that would make anyone who saw them cry. Children black and blue from banging their heads on furniture and walls to distract themselves from their chronic gut pain. And then, photos of the same children, after proper investigation and treatment, happy and smiling. It is absolutely heartbreaking that British children cannot expect the same treatment autistic children now receive in other countries. It horrifies us both.’ Carmel says her husband was aware of the political sensitivities from the beginning and, anxious not to provoke an official backlash, wrote to senior hospital colleagues in advance of the Lancet publication. ‘Andy warned that if he were to be asked his opinion, he’d be morally obliged to state his personal view that parents should revert to single, separate vaccinations against measles, mumps and rubella, pending the further research he assumed would follow,’ she says. And, after giving that opinion at a Press conference, all hell broke loose.
Since then, Wakefield has been vilified by the international medical establishment, government leaders and the powerful pharmaceutical industry. But he has also been hailed as a hero by thousands of parents in Britain, America and elsewhere who believe their children to have been grievously damaged by MMR, and by a small but increasing number of doctors, researchers and other supporters who share their fears. ‘My husband has been persecuted by extremely powerful forces for asking questions that his research findings made it morally and ethically essential for him to ask,’ Carmel says angrily.
‘The spotlight really fell on Andy after that news conference, but that wasn’t the beginning of his work. If he’d just voiced concerns based on nothing other than a preliminary study of 12 children, in an off-the-cuff way, of course that would have been unacceptable.’ And that is exactly how the Government propaganda machine and drug company apologists have characterised Andy’s actions. ‘But by the time of that conference, he’d completed a detailed analysis of MMR’s safety studies internationally, running to hundreds of pages, and was deeply alarmed by the inadequacies revealed – inadequacies since independently confirmed. ‘By the time that Lancet paper was published, the Royal Free team had investigated not just 12 children, but scores. And subsequently, they saw hundreds with this new form of bowel disease, allied to autism and other types of severe neurological damage of which there’d been absolutely no sign prior to their MMR jabs – hundreds of children’s parents all telling the same stories, with the same histories and clinical findings. Carmel, who runs a consultancy in London specialising in medical litigation, says these findings have since been replicated by researchers in America, Italy and Venezuela. ‘But it’s as if these scientific papers don’t exist,’ she says. ‘As if all my husband ever did was to be involved in a study of 12 children, then shoot his mouth off. The endless stream of lies told by powerful people in positions of great public trust is horrifying.
‘The Government and its medical advisers don’t even have the excuse that there’s no alternative to MMR. There are safe, effective single vaccines – or there were, until the Government suddenly withdrew them from the NHS, around six months after Andy sounded his warning.’ In 2001, Wakefield lost his job at the Royal Free. The hospital said ‘his research was no longer in line with the department of medicine’s research strategy and he left the university by mutual agreement.’ Ostracised by the medical community in Britain he was forced to seek work abroad. For the past four years he has been running a clinic in Austin, Texas which, inevitably, has taken a toll on his family.
‘ It has been a very difficult, lonely situation for all of us,’ says Carmel. ‘We speak on the phone a couple of times a day and Andy makes sure he talks to the kids every day, too. But being on different time zones can make it difficult. It’s very empty here without him but it has to be a lot worse for him. ‘Andy has had to adapt to living alone. He’s isolated because he is away from us and that is very hard. Coping with being so vilified in your native country has not been easy for him – or any of us – but he is determined that he must do what’s right and carry on his research. The children have been amazing. It must hurt immensely to know that their father has been ridiculed and that he has had to leave his home, but they don’t complain because they feel it is right that his work should carry on.’ Wakefield and two former colleagues at the Royal Free are currently under investigation by the General Medical Council. He also has four libel actions pending against the journalist whose attacks on his integrity and motives sparked the GMC inquiry. Wakefield was also accused of failing to declare a £50,000 research grant for a separate but related project, paid to the hospital by lawyers representing parents of children then planning to sue MMR’s manufacturers. Wakefield has denied any wrongdoing, as have his two colleagues. For the past two and-a-half years, though, they and their families have had to live with the threat of trial before a GMC panel and, if found guilty, face the humiliation of being struck off the medical register. The three men, however, still don’t know the precise charges to be brought against them. Nor do they have any idea when – or even if – the hearing will be held. But the Wakefields have got the message. ‘Andy knows there is no future for him now in the UK,’ Carmel says. ‘There is simply no way he could ever work here again. His former colleagues have made that crystal clear.’ Later this month she and the family are moving out permanently to Texas to join him, a difficult but necessary decision. ‘Of course I am going to be sorry to leave Britain,’ says Carmel. ‘But it would be much harder if I didn’t leave feeling such disgust about the sinister forces of censorship and government propaganda at play here.
‘I used to believe that this country was a bastion of academic integrity and intellectual freedom. So this whole sad process of attrition, isolation and vilification, on a very personal level, has sickened and disillusioned me. But I refuse to think of this as running away. I prefer to think we have taken an intellectual and moral stance: that Andy’s vital work is going to continue, come what may; that we have been fortunate enough to find a fantastic place where it can continue; and that we are going to re-establish our family life, and carry on.’ For the past two years she has also been researching a book exploring the background to her husband’s concerns about MMR, as well as reflecting on the impact of this controversy on their family. ‘One of the unexpected benefits of the GMC investigation into my husband is that we have been given access to all kinds of confidential information that would otherwise never have come to light,’ she says. ‘Documents obtained by Andy under the Data Protection and Freedom Of Information Acts show exactly what was going on behind the scenes at the Royal Free, before Andy was forced out in 2001, the Department of Health and elsewhere over MMR; letters, reports, minutes of meetings and e-mails that they never intended us to see. ‘While I’ve found it unpleasant and upsetting reading about the cynical machinations that were going on, it’s very satisfying to be able to reveal them. The public most certainly deserves to know. Above all, I want parents to finally be able to make their decisions about whether to vaccinate their children with MMR with the full facts in hand. ‘I appreciate how confused many parents feel about all this endless debate and the misinformation that’s been peddled, and I hope this book will help them understand exactly what’s happened, and why. To date, virtually all they have had to guide them is an overwhelming barrage of government propaganda and spin, funded by millions of pounds in taxpayers’ money.’ She thinks people will be shocked when they read about what went on ‘behind the scenes’ and promises her controversial husband will not stop asking important questions of the medical community. ‘Whatever his enemies may hope, he’s not going away,’ she vows. ‘Nor are the ever increasing number of children with autism disorders, now tens of thousands around the world, who also suffer grievously from this new form of bowel disease. ‘ I am determined to hold on to my unwavering belief that justice will prevail, that the truth will out, and that these children will eventually be given the help they need.’