Reproduced with the kind permission of Justine
Picardie
Telegraph Magazine 8 June 2002
MMR: who to believe?
The whistleblower, the medical establishment and the parents put their case
One in 86 primary-school children in the UK has autism,
compared with one in 2,200 in 1988. Dr Andrew Wakefield is among those who
believe that this rise is linked with the MMR vaccine, yet the Government is
convinced of its safety. Who are we to believe?
Special report by Justine Picardie
On a quiet suburban road in south-west London, not far from the Thames, there
is a neat, white-painted detached house, behind a clipped laurel hedge. It is
a comfortable family home, with children''s bicycles at the front, and a
barbeque in the back garden; the kind of place where you assume ordinary life
goes on, undisturbed by the occasional roar of aircraft in the sky overhead,
as they make their descent towards Heathrow.
In this house, lives Dr Andrew Wakefield, his wife, Carmel, who is also a
doctor, and their four children: a likeable, lively family, the kind you would
be happy to have as friends. But in the past year, their lives have been
turned upside down, and this summer they are leaving their home and moving to
the States, because Dr Wakefield can no longer continue his work in this
country. His crime? To question the safety of the combined measles, mumps and
rubella vaccine.
Now, you've probably read something about this subject before: the front-page
newspaper reports earlier this year, asking questions about the links between
MMR and autism; and the replies from the Department of Health, damning Dr
Wakefield as a lone, maverick doctor whose research could not be replicated.
You've thought about your own children, perhaps, or grandchildren, and maybe
wondered why you never used to hear about autism 15 or 20 years ago, and why
now everyone seems to know someone with an autistic child. Then you probably
turn the page, because the story seems so unlikely - how can a vaccine
designed to promote good health, in fact damage a child? - and anyway, news
moves on, as we do.
But as is so often the case, there is a longer, more intriguing story behind
the headlines. Why, for instance, has Dr Wakefield's telephone been tapped?
(An intercept on his home number was discovered last year by a telecom
engineer, who had been trying to work out why the Wakefield's BT burglar alarm
kept going off for no apparent reason.) Why, too, do his supporters in the
medical establishment fear speaking out openly on the issue, preferring secret
meetings and off-the-record briefings? And why do so many parents of autistic
children believe there has been a concerted cover-up of evidence suggesting a
possible link between the vaccine and their children''s condition?
Dr Wakefield himself (a 45-year-old surgeon and consultant gastroenterologist
whose research at the Royal Free Hospital in London was formerly commended for
its 'elegance' - before he made his controversial mention of MMR) believes
that money lies at the heart of the matter. After all, he points out, a court
case involving more than 1,000 children whose parents believe they have been
damaged by the vaccine will be heard against the vaccine manufacturers in this
country at the end of next year; and similar actions are proceeding in
America. If these court actions are successful, he says (and the drug
companies have not yet managed to have them struck out, despite repeated
efforts to do so), ''There is potentially a massive liability, that would
bankrupt the vaccine manufacturers. In California last year, there were 3,000
new diagnoses of autism; the great majority of those MMR-related. If it can be
shown that the drug companies knew there were problems [with the vaccine] but
had done nothing, then the awards increase astronomically. We could be talking
about hundreds of millions of dollars.'' (Already in the US more vaccine
damage payments are made after MMR than any other vaccine, and the total
payments to date are close to $1 billion.)
As he speaks, you can hear the tiredness
in his voice, and his face is grey with exhaustion. The phone rings
constantly, for Dr Wakefield has become a pivotal figure for many in the
parents'' campaign; a handsome, glossy-haired charismatic hero to families of
autistic children, in this country and America, yet a heretic to those
scientists and civil servants who disagree with him. The one thing he cannot
be described as is 'lone': not that this was ever the case, given that his
original paper in the Lancet, published in 1998, that raised the possibility
of a connection between MMR and autism, was co-authored by 12 other Royal Free
researchers, including Professor John Walker-Smith, one of the most
distinguished paediatric gastroenterologists in the country. (Prof
Walker-Smith, who has now retired from his chair at the Royal Free, refused to
comment to the press when the paper was published; but in a letter earlier
this year to the Lancet, he wrote, ''I continue to support the MMR vaccine
(but) I am also concerned that further urgent research is needed to resolve
the genuine concerns of parents who associate MMR with the onset of autism and
to try to identify whether there are factors that may place a very small but
important group of children at risk of such a disorder.'')
In fact, serious concerns about the jab had already been
raised over the years - in Japan, after an outbreak of vaccine-related
meningitis (MMR has now been completely withdrawn in Japan in favour of single
shots); and in Canada (where it is still administered, in a different form),
for the same reason.
Dr Wakefield, the son of a neurologist and a GP -
had spent some time working in Canada, before returning here to research the
link between Crohn's disease (a chronic inflammatory bowel disorder) and the
measles vaccine. In 1997, after he, along with several other researchers,
published a paper in the Lancet on the subject, he was contacted by the mother
of an autistic child, Rosemary Kessick, who had been told about his work by
another mother, Jackie Fletcher, who had read about it on the internet. Both
women had strong suspicions that their sons'' autism had been caused by MMR
vaccinations; and Kessick, a former business analyst, decided that Wakefield's
research might provide more of a clue. ''In the week after the paper was
published, I got another five calls from different mothers, all saying the
same thing.'' says Dr Wakefield. ''These were not rabid, anti-vaccine crazies,
but highly articulate, professional people saying, ''This is what happened,
my child was normal, then they had MMR, and then they lost all their skills,
they became autistic, and they got bowel symptoms - bloating, pains, diarrhoea,
weight loss.''
When Dr Wakefield and his colleagues at the Royal Free began to examine the
children, ''we didn't necessarily expect to find anything, but when we looked,
we did, and we were very, very surprised.'' As more children were seen, Dr
Wakefield developed a hypothesis that the measles virus in the MMR vaccine,
perhaps given impetus by its combination with two other live viruses, was
somehow damaging the gut of certain, susceptible children, allowing toxins to
escape from the leaky gut and into the brain. In February 1998, the Royal Free
team therefore published their paper in the Lancet, describing 12 children
they had examined who appeared to suffer from a new form of bowel disease,
possibly triggered by the MMR vaccine, that could be linked with autism. At a
press conference to launch their study, Dr Wakefield also announced his belief
that the Government should give parents the choice of single mumps, measles
and rubella vaccines, in case the combination of live viruses in MMR was
contributing to the problem. ''And then there was uproar,'' he recalls, ''and
some of my other Royal Free colleagues said, ''Why did you mention MMR?'' And
I said, ''I'm not in the business of censoring the parents' story.'' It would
have been taking a vital component out of the story, and removing it for the
sake of convenience.''
In the months that followed, and as the arguments became more polarised, Dr
Wakefield could not ignore the parents'' belief that MMR was implicated in
their children's autism. ''We never pretended to have all the answers,'' he
says, ''We're just beginning to understand. But at every step, the parents
have proved to be right, and proven vastly superior to the medical dogma in
terms of its reliability and trustworthiness.''
In fact, it was the father of an autistic boy - a lecturer in pharmacy at
Sunderland University named Paul Shattock - who was one of the first to
develop a theory that autism might be linked to the gut, long before the
doctors at Royal Free became involved. Shattock - a charming, silver-haired
man with a nice line in wry self-deprecation - now runs the Autism Research
Unit out of a tiny office at the university, on a shoestring budget.
(''Funnily enough, the drug companies don't seem to want to give us any
research grants,'' he says dryly.) Unlike the new generation of autistic
children seen at the Royal Free (who have 'regressive' or 'late-onset
autism'), his son, born in 1970, had 'classic autism', present from birth; but
as part of Shattock's long-term campaign to provide better recognition and
services for his child and many others, he began to become interested in the
issue as to whether diet (specifically excluding gluten and dairy products)
might help. ''I was told I wasn't objective, as the parent of an autistic
child,'' he explains, ''yet without parents, there would be no services, no
research in this country. It was parents who fought the original orthodoxy
that autism is caused by bad mothers, 'the refrigerator mother' who causes the
autistic child to reject contact with others.'' (He is referring, here, to the
theories advanced by Leo Kanner, a child psychiatrist who identified a group
of 11 children in 1943 as having what he saw as a new mental illness,
characterised by self-absorbed detachment from others. Kanner coined the
phrase 'autistic', from the Greek word 'auto', meaning self.)
Shattock had set up a database on autism in the early Eighties, ''I didn't
believe the stuff other parents were saying about diet, to begin with - but I
checked it out, and discovered yes, it made sense: the incomplete digestion of
gluten and casein produced these morphine-like compounds.'' He then began to
explore the possibility that the compounds - known as opioids - got into the
blood, and crossed into the brain, where they disrupted the central nervous
system. Similarly, he says, with characteristic candour, ''I didn't believe
the stories about MMR when I first heard about them - I'm a very orthodox
pharmacist.'' But as he painstakingly logged more and more case histories -
7,000 in total, now - it seemed to him that perhaps 10 per cent were occurring
after MMR vaccination. ''These kids appear to have different symptoms to
classic autism'' - for a start, they were developing completely normally, with
no sign of neurological problems until vaccination - and so in 1996, I said to
the Department of Health, 'There's something in this, can we talk?' They
refused.''
The Department of Health's lack of interest is, perhaps, surprising: not only
because of the alarming rise in the incidence of autism (one in 86
primary-school children now has autism, according to a report by the National
Autistic Society, compared with one in 2,200 in 1988), but also given that
there had already proved to be problems with MMR. The vaccine was launched in
this country in 1988, just as doctors in Canada had raised alarms that there
could be a problem with a version of MMR that contained a particular strain of
the mumps virus, known as the Urabe strain. By February 1988, the Canadians
had identified eight suspicious cases of meningitis in children who had
recently received MMR vaccinations; as a result, the Urabe strain vaccine was
withdrawn in Canada, pending further investigations. Despite that, in October
1988, public health officials in the UK Department of Health went ahead with
an MMR campaign using two vaccines - Pluserix and Immravax - which each
contained the Urabe mumps virus, alongside live measles and rubella. Even when
the Canadian ban on Urabe was made permanent in May 1990, Britain did not
follow suit until September 1992.
Jackie Fletcher's son Robert was one of those vaccinated with Immravax - and
he received his MMR injection in November 1992, more than two months after it
should have been withdrawn. ''Up until then,'' she says, ''he was fine, very
healthy. Then he had his MMR at 13 months, along with a Hib (meningitis) jab,
and 10 days later, he went into a huge fit. His eyes rolled into his head, his
little arms and legs were twitching, he was very hot, so I stripped him off,
but he was even worse after he stopped the fit - shallow, rasping breathing. I
thought he was dying.'' In casualty, as Robert lay unconscious and covered in
blotches, ''I said something to a doctor about the vaccinations, and he said,
'Oh nonsense'. He just shrugged it off. I raised it again the next day with
doctors on the ward round, and they said his ears were slightly pink, so it
was a possible ear infection.'' But as time went on, Robert had more and more
fits, and was eventually diagnosed with epilepsy the following year. Now, at
10, he has autistic traits, and a mental age of 14 months.
The Fletcher's were not prepared to accept the repeated assurances that
Robert's problems were nothing to do with the vaccination, and Jackie, a
former bank clerk with a meticulous approach to research, started to find out
more. During the course of many more emergency hospital admissions for Robert,
they met other families in casualty who said that their children had just had
fits after receiving MMR. Still, the consultant neurologists denied that the
vaccination might be implicated, ''and then one of our friends downloaded some
information from the vaccine manufacturer on the internet, and lo and behold,
the drug company itself mentioned the possibility of seizures and neurological
damage.'' Eventually, Jackie and her husband, a transport engineer for
Cheshire County Council, managed to track down the batch number for the
vaccine that Robert had received, as well as discovering for themselves what
no doctor had thought to tell them: that it contained the Urabe mumps strain,
and should have never have been injected into their son. By then, they were in
touch with five other families who also believed their children had reacted to
the vaccine, and after a short paragraph appeared in the local free paper
about their experiences, they were contacted by another 30 families in the
same small local catchment area. ''They all repeated what the people we had
met in the hospital had said - their children had had fits eight, nine, 10
days after the jab. They had speech problems, learning difficulties.'' On the
advice of their local MP, Ian McCartney - then shadow health minister - an
action group was set up, called Jabs. Jackie, and others involved, continued
with their research, discovering that MMR had been banned in Japan in 1993
owing to reported neurological problems; and that a Finnish study, widely
quoted by the Department of Health in support of MMR safety, had been partly
funded by one of the vaccine manufacturers, Merck.
As more and more letters and emails and phone calls flooded into Jabs, ''we
noticed a number of families coming to us, saying that their autistic children
had also been suffering from long-term 'toddler diarrhoea'.'' Given that this
was usually dismissed by doctors as unimportant or irrelevant, Jackie Fletcher
seized on Andrew Wakefield as someone who might be able to help these
children. ''Our own experience with different consultants involved with
Robert's complex problems was that each specialist was only interested in one
aspect of our child''s health. The ear, nose and throat specialist was not
interested in his immune system problems or epilepsy; the neurologist dealing
with his epilepsy wasn''t interested in his repeated ear infections. Andrew
Wakefield was like a breath of fresh air after being in a stagnant,
air-conditioned room.'' It's an account you hear echoed over and over again by
other parents, such as Vivian McKelvey, whose son Alec received the same brand
of MMR vaccine as Jackie's child. ''Other doctors had told me that the fact my
son developed autism and bowel problems after MMR was purely coincidental,
that I was just desperately searching for any cause, that in fact he had no
real bowel problems at all. It took a year for him to be seen at the Royal
Free, where they discovered he had colitis and inflammatory bowel disease.
Until then, no one had listened to me. Since then, he's been getting
treatment, which has made a huge difference to our lives.''
To his exasperated employers at the Royal Free, however, Dr Wakefield was an
embarrassment, held by them, (not to mention the Department of Health) to be
largely responsible for the falling uptake of MMR vaccine in the UK. According
to Brent Taylor, Professor of Community Child Health at the Royal Free, and
co-author of several epidemiological studies that have found no link between
MMR, autism, and bowel disease, ''Everyone has always known that children with
developmental problems - cerebral palsy, Down's Syndrome, and particularly
autism - have bowel problems.'' He believes that this is caused by 'funny
nervous systems', possibly exacerbated by what he describes as 'abnormal
diets': whether of their own choosing (''I heard about one child who was
eating sawdust or sand, in quite large quantities'') or of their parent's
making. ''There's not a shred of scientific evidence that the gluten- and
casein-free diets has any direct therapeutic effect,'' he says. ''These
restricted diets need to be very carefully supervised by a dietician, and
often they''re not, and we really don¹t know what side effects they might be
causing.'' As for the apparent rise in cases of autism: Professor Taylor
thinks this is the result of better diagnosis; while the widespread concern
expressed by parents that vaccination may have triggered their children's
autism is down to the irrational belief ''that there must be something that
has caused it. We listen to what parents say, but it does have to be
interpreted, based on wider experience or different understandings.''
Thus it was that by the beginning of the year Dr Wakefield's work was held to
be ''no longer in line with the department of medicine's research strategy''
at the Royal Free. But at the same time he published further research, in
conjunction with Professor John O'Leary at Trinity College, Dublin, revealing
the presence of the measles virus in the gut of 75 of 91 autistic children
with bowel disease. No mention was made by Professor O'Leary in the paper of
whether or not the children had received the MMR vaccine (in fact, as Dr
Wakefield now reveals, ''more than 95 per cent of those who had the virus in
their gut had MMR as their only documented exposure to measles''), because it
was simply too controversial. ''As soon as you include vaccination in there,''
says Dr Wakefield, ''you raise hackles, and people treat the paper
differently.''
None the less, David Salisbury, head of immunisation policy at the Department
of Health, and Sir Liam Donaldson, chief medical officer, continue to
emphasise the safety of MMR, while pouring scorn on the research of anyone who
disagrees. As for the past problems with Pluserix and Immravax, Salisbury (who
was instrumental in the introduction of MMR in 1988) accepts that the Urabe
vaccine did cause some cases of meningitis, but points out that ''These
particular children had a viral meningitis. Viral meningitis is usually mild,
self-limiting, and gets better on its own''. He is as scathing about the
latest O''Leary paper as he was about Dr Wakefield''s earlier work: ''I've
seen far more published work that says they cannot find the measles virus [in
the gut]''; and, like Prof Taylor, believes Dr Wakefield found no real
evidence of inflammatory bowel disease in autistic children. He describes
their symptoms, somewhat dismissively, as 'constipation and diarrhoea'; as to
the cause, ''If you ask people who look after children with autism, they will
tell you these children have bizarre eating habits''.
Which is leaves us where, exactly? Well, each side continues to attack the
other''s methods of research (Dr Wakefield's suuporter's for example, have any
number of detailed criticisms of Prof Taylor's reports); but aside from the
arcane scientific and medical disputes, this is when the story gets even more
murky, and doctors at a very senior level insist on talking off the record
(''We've all seen what happened to Andrew Wakefield, and we don't want our
careers destroyed'', they say, with understandable caution). As the inevitable
conspiracy theories emerge, you start hearing dark tales of the bugging
devices found in surgeries that continue to offer single vaccines; about
apparently inexplicable burglaries, where cash and computer equipment is left
untouched, but records containing names of parents'' groups go missing. These
occurrences, which are now under police investigation, may of course be
entirely coincidental; and as for all the conspiracy theories - perhaps they
are no more than the overheated product of too many viewings of Hollywood
films such as The Insider and Erin Brockovitch. (It's not hard to imagine
Russell Crowe playing Dr Wakefield, opposite Julia Roberts as a feisty single
mother fighting for justice for her child.)
But if we put the conspiracy theories aside, what begins to emerge, through
all the claims and counter-claims, and the statistics that seem to prove both
sides of the MMR battle, is an undercurrent of unease about the way the debate
is being conducted. According to one senior paediatrician I spoke to, ''You
can still appreciate the benefits of MMR for the majority of children, whilst
accepting that there are a minority who may well be damaged by it.'' Yet that
position, she says, is increasingly difficult to maintain in a profession
where so much medical research is paid for by drug companies. ''The older and
wiser I get, the more I realise that these companies are hugely wealthy, and
therefore hugely powerful''. She, like others, points out that Dr Wakefield
and O'Leary are unusual in not having their research funded by vaccine
manufacturers; indeed, Dr Elizabeth Miller, of the Public Health Laboratory
Service, Brent Taylor's co-author, and a government advisor on vaccination
policy, has received funding in the past from a number of companies, including
SmithKline Beecham (one of the manufacturers of the Urabe strain of MMR),
though this money goes to her department rather than to her directly. Taylor -
who has remained independent from the vaccine manufacturers - admits this
situation may 'raise concerns'. Nevertheless, he says, laughing heartily, ''I
don't believe drug companies are in the business of promoting medicines that
will damage children. It cannot be to their advantage.''
Why, then, asks Jackie Fletcher, and several doctors who prefer to remain
anonymous, did SmithKline Beecham go on to sell its Urabe strain of MMR
vaccines to Brazil, after they were withdrawn in Canada and the UK? (A paper
in the American Journal of Epidemiology documents the resulting outbreak of
aseptic meningitis following a mass immunisation day in Brazil in 1997.) A
spokesman for SmithKline Beecham (now GlaxoSmithKline) says that it was
pointed out to the health authorities in Brazil that the Urabe vaccine had
been withdrawn elsewhere, but ''they chose to use it because they felt the
health benefits outweighed the risks''. Similar concerns have been raised by
Dr Richard Nicholson, editor of the Bulletin of Medical Ethics, who has also
drawn attention to the Joint Committee on Vaccination and Immunisation (JCVI).
This is a little known yet immensely powerful quango made up of a select group
of doctors and scientists who provide advice to the Department of Health -
many of whom have professional and personal links with the vaccine
manufacturers, including SmithKline shareholdings and consultancy fees.
It is, yet again, the parents of autistic
children who have drawn attention to these facts - one man in particular:
David Thrower, whose son Oliver received a single measles vaccine at 14
months, and the MMR at the age of 4. Oliver, ''a very advanced little boy
until the vaccination'', is now 15, doubly incontinent, and chronically
sleepless. ''It's like defusing a bomb each day,'' says Thrower, who gave up
his work as a transport planner in Warrington to care for his son. Despite the
exhaustion, however, Thrower has also found time to amass an enormous amount
of information on the MMR/autism issue, including some of the potential
conflict of interests held by members of the JCVI, as well as that of another
influential Government quango, the Committee on Safety of Medicines (CSM). In
one of Thrower's detailed reports that he has submitted to anyone who might
listen, he points out that ''37 members of the CSM have a total of 188
separate financial links with the pharmaceuticals industry, including 82
separate personal declared links. These include shares, fees, consultancies,
research grants and non-executive directorships.'' As for the JCVI: in 1999
four members had SmithKline Beecham interests, while others had links with
Glaxo Wellcome (the two companies subsequently merged to become
GlaxoSmithKline). These links range from research grants to shareholdings.
Dr Nicholson has also pointed out that the equally influential Medical
Research Council committee, which decided that no further research was needed
into the links between MMR and autism, included three members (out of 14) who
are paid consultants for the vaccine manufacturers in the forthcoming legal
case; while the committee's chairman is a Glaxo-Wellcome shareholder. He
remains concerned about the continuing financial links between the vaccine
manufacturers and Government advisers on the CSM and the JCVI.
Yet when I put these points to Yvette Cooper, the health minister responsible
for immunisation policy, she says with the conviction that has made her a New
Labour star, ''I find it astonishing that any of it should cast doubt on the
integrity of their review.'' She remains convinced of the safety of MMR, and
its continuing benefit to children''s health: ''I am not a medical scientist,
but when you get the MRC and independent bodies saying there is no evidence to
show a link [between MMR and autism], that''s the conclusion, based on the
science, that I have to respect.''
So, the vaccination programme will continue, but it seems unlikely that the
doubts will disappear. As I talked to David Thrower in his study, surrounded
by the papers he has painstakingly compiled - and will continue to amass - he
points out of the window, across another neat suburban garden. ''Two autistic
girls live over there,'' he says, ''which means there are three autistic
children within 50 yards. It used to be so rare when we were growing up - no
one knew anyone with autism, but now everyone knows someone. Of course, the
Department of Health says it's just better recognition, better diagnosis, but
that can't be the whole picture.'' He clicks on his computer, and opens yet
another document emailed to him from the US, revealing increases of 644 per
cent in new cases of autism across America (in California the numbers have
risen from 1,605 autistic children in 1992-3 to 10,557 in 2000-2001). ''Not
that anyone will pay any attention to this,'' he says, bitterly. ''We're given
a very comforting lullaby, that if a child has a minor reaction after the MMR,
well, it might have been caused by the vaccine - but if it's serious, the
vaccine can't possibly be to blame. So now the Department of Health has put
together this nice little jigsaw saying, MMR is completely safe - but there is
an extra piece, which the Department of Health can't explain away, and that's
our children. And they're not going to go away.''
