BRIAN DEER:
THE VANISHING VICTIMS Page 2
To be
honest, at the time I never paid attention to this
saga's first 23 years. I was either too young, or it
was not my story. I have no children. I had never
heard of Wilson. And so completely had the world
accepted his conclusions that, in April 1988, I
casually commented in The Sunday Times that
"everybody knows" that the whooping cough
vaccine and brain damage were sometimes, albeit
rarely, linked.
But
then I got a phone call, from a woman in Ireland,
that would lead me to think again. And after months
of research, particularly of court documents, I came
to the conclusion that for the past quarter-century,
parents have been tragically and unnecessarily
scared.
The
caller was Margaret Best, a short, energetic, then
47-year-old Irish housewife, who had successfully
sued a drug firm over her brain-damaged son, Kenneth
Best. I had also clashed with this firm, the Wellcome
Foundation, now swallowed into Glaxo-Wellcome,
Britain's biggest company. And possibly on the adage
that my enemy's enemy is my friend, in November 1996
she invited me over to stay at her house near the
city of Cork.
Although
Kenneth's case involved a stronger-than-normal batch
of vaccine, at face value it was proof of Wilson's
thesis, the clearest case of vaccine damage in the
world. After a string of David and Goliath trials in
Dublin, which started in April 1989 and finished in
July 1995, the Bests won £2.75m, plus costs, in a
result which set the company back by nearly £10m. In
January 1994, BBC1 broadcast an hour-long celebration
of Margaret's victory, entitled Against All Odds.
Margaret
was living like a lottery winner in a five-bedroomed
house down a maze of country lanes, near the airport.
The property had electric gates, a gravel drive,
floodlights and barking dogs. Furniture was chunky
and fabrics rich. Everything, understandably, looked
new. Kenneth was housed in a single-story annexe,
with its own kitchen, laundry, bedrooms and lounge.
The
story she told me was not new to her. She had been
battling over it for decades. It was in 1969 when
Kenneth's problems began - the year men landed on the
moon. She was just 22 and had been married for 13
months. Her husband was 26, a former fireman. They
lived in a cottage on a hill outside Kinsale, then a
poor south coast fishing village.
But
it was all new to me and I found it a struggle to
absorb the essential facts. On Wednesday September
17, 1969, it seemed, Kenneth was 4.5 months old and
received his first DTP vaccination. He apparently had
a fit, or "turn", six hours later while
eating his tea, and, after that, more than 10 times
daily. "His face got very red and his eyes
turned in to the right, in to the corners,"
Margaret had told the Dublin judge. "Both his
arms came up to his chest and it was as if his whole
body was stiff."
She
said that she phoned her general practitioner that
night, had taken Kenneth to him next morning, and
then at least twice a week for months. She claimed,
however, that he dismissed her, saying "it was
probably a reaction to the vaccine" and
"there was nothing to worry about".
There
were certain confusions, to which I paid no attention
at the time. Despite the GP apparently blaming the
vaccine, for instance, Margaret took her baby for two
further routine DTP jabs at monthly intervals. And
although the doctor's records contained six entries
for the family, mentioning trivial ailments such as
"nappy rash" and "flu", there was
nothing neurological until January 1970.
Eight
months later, a paediatrician diagnosed Kenneth as
having West's syndrome, a progressively disabling
seizure condition which usually starts at between
three and eight months of age, and which is often
genetic in origin. The records of this doctor, and
those of another consultant, also contained oddities.
Neither was told about the DTP and both took down
dates for the boy's first fits that were many weeks
after his jab.
Such
discrepancies were serious: experts who believe in
the vaccine damage link say that fits must occur with
72 hours to be plausibly linked to it. The
contradictions inevitably raised the question of
whether Margaret's story was accurate. Yet, in its
legal defence, Wellcome's lawyers simply said that
she had muddled the dates. "I am not suggesting
for a moment Mrs Best is telling lies," its
barrister said in court. Counsel for the GP agreed,
sympathetically: "I am sure poor Mrs Best
believes these things."
It
was a fascinating story and, one morning in her
kitchen, we did a short interview. We talked about
her father, a bookie's clerk, about how she left
school at the age of 12, and about her first job as a
care assistant. Then we discussed her husband, Ken,
and their subsequent separation. And finally the
fateful night.
"So,
where did you phone the doctor from?" I asked,
trying to get a picture in my mind.
Margaret
got up, walked across the kitchen and did something
or other at the cooker. "Well," she said.
"There was a neighbour whose phone I sometimes
used."
"Um,
so is that what you did?"
She
paused. "No," she said, and moved back to
the cooker.
I
waited until she returned. "So, er, what, you
used a phone box?"
"Yes,"
she said.
It
was background colour, of no great consequence. But
later I listened to the tape. Why mention the
neighbour if she had used a phone box? What was the
reason for delaying her reply? Surely, the night
which saw her child's life wrecked was indelibly
etched on her mind?
*****
The
panic over Wilson's paper came and went, as health
scares inevitably do. By the end of the 1970s,
journalists had run out of angles, while the killer
whooping cough epidemic and education campaigns won
parents back to vaccination. Any risk to children of
being inoculated, it was recognised, was less than of
them going without.
But
in May 1981 a 184-page government book restored life
to the consultant's crusade. It was titled simply
Whooping Cough and was issued in a blue cover by Her
Majesty's Stationery Office. It contained reports
confirming the brain damage link, including two that
estimated the risk. They were the hardest evidence
produced anywhere. The book joined Wilson's paper as
a classic.
The
first report was from a panel of six doctors, who
studied notes on 229 children. Most were referred by
Rosemary Fox, whose association was besieged by
handicapped children's parents whenever media stories
appeared. She distributed questionnaires, sifted out
cases that she considered unlikely to be due to DTP
and sent the rest to government doctors. The panel
found 125 "suspected" vaccine victims and
said that 1 jab in 155,000 led to brain damage, or
death.
The
second report gave findings from a huge medical
survey. Named the National Childhood Encephalopathy
Study (NCES), this asked all hospitals to notify
investigators of children admitted with certain
symptoms. It ran for three years from mid-1976,
during which 2m DTPs were given. It concluded that
the risk of injury or death was 1 in 310,000 jabs.
Wilson
was a member of the six-doctor panel and an advisor
to the hospital survey. But the blue book
acknowledged two other consultants who by now had
assumed prominent roles. Both were epidemiologists
and professors of community medicine. One, Gordon
Stewart, of Glasgow University, drafted Fox's
questionnaire. The other, David Miller, of the
Central Middlesex Hospital, London, headed the NCES
team.
Government
authority and professional prestige oozed from the
blue book's pages. The 1-in-310,000 figure was
adopted throughout the world (and is still used by
health agencies as the official risk estimate).
Journalists pounced on the issue again and restarted
emotive campaigns. But, as with Wilson's original
series of 36, there were grave problems in both
reports that have been hidden from parents to this
day.
On a
strictly scientific basis, the panel's
"suspected" cases counted for little. The
doctors blamed the vaccine if paperwork - mainly
Fox's questionnaires - said that symptoms closely
followed a jab. The impact of coincidence was
overpowering: more than 2% of infants have fits, for
various reasons, and the panel's cases were skimmed
from millions of families alerted by media reports.
The questionnaires (headed "Adverse Reactions to
Vaccines"), moreover, was often filled-in years
afterwards by parents seeking compensation.
Such
shortcomings were glossed over, but the veneer
cracked when a specimen of the cases looked at by the
panel came to court. The child in question was
Johnnie Kinnear, born in December 1969, and, like
Kenneth Best, an apparently obvious vaccine victim.
In 1974, his father, a factory worker, had read about
Fox's association in The Sun and, with Wilson's and
Stewart's support, won £10,000 compensation. He then
got legal aid to be the English test case for more
than 250 pending actions.
The
Kinnear trial began in the spring of 1986 and ran for
29 remarkable days. It was the first time in Britain
that any drug company - again it was the Wellcome
Foundation - had defended the safety of a product in
court. The judge was Mr (later Lord Justice)
Stuart-Smith, a 58-year-old father of six.
Johnnie,
from west London, had the whooping cough vaccine in
February 1971 at the age of 14 months and, according
to his mother, had a fit seven hours later. She said
she took him to her GP the next morning, but,
although severe seizures continued every day for
months, the doctor brushed her off. She said he told
her that it was "normal for children to have
reactions," and there was "nothing to worry
about".
But
the mother's evidence was so incredible that the
Kinnears' barristers informed the judge that they
could not carry on. Not only was her tale irrational
and contradictory, but it clashed with a Hammersmith
Hospital record taken five months after the jab.
"Baby boy admitted via casualty," it said.
"'Fit' 4 days ago - occurred without warning
whilst eating tea." Johnnie was mentally
handicapped - possibly owing to breathing problems at
birth - but the (blue-booked and compensated) boy,
then 16, was not a vaccine victim. His barrister told
the judge: "Anybody who was in court and heard
the relevant witnesses, and heard them, particularly,
cross-examined, and saw the discrepancies between
their accounts and the medical records, can be left
in no doubt."
Wilson's
claimed link between brain damage and whooping cough
vaccine was now in trouble. But it was Gordon
Stewart, then aged 67, who bore the brunt of the
embarrassment. After contacting Fox during the 1970s
panic, this white-haired professor had become the
victims' champion, backing hundreds of compensation
claims and becoming patron of the American campaign.
During 80 hours of evidence, he was caught wrongly
describing aspects of the NCES and misunderstanding
some case studies to such an extent that he was
described in court as an "evidential
liability". At one point, the company's counsel
quoted from an expert report by the professor that
apparently summarised a research paper about
reactions to the vaccine in children.
"Do
you remember anything about the age of the
children?" the barrister asked.
"No,
not offhand," the professor replied.
"Or
the ethnic origin?"
"No,
I cannot remember that. It was an American study, I
know that."
His
interrogator passed him the paper in question. It was
a write-up of experiments on rats.
After
this farcical hearing, there was a second test case
that hinged on the crucial question of whether the
vaccine could cause brain damage. Susan Loveday, a
17-year-old suffering from autism, was suing through
her mother after receiving a course of jabs from a
London GP in 1970. But instead of bolstering the
vaccine-brain damage link, her case was even worse
than Johnnie's. Fox had weeded-out Susan's
questionnaire as implausible. Wilson's compensation
system had rejected her mother's claim. Even Stewart
thought that she was not a victim. "She was not
vaccine-damaged," he said. "She was damaged
before."
In
spite of this consensus, the trial went ahead on the
general principle of the link between the vaccine and
brain damage. The judge decided not to hear direct
evidence from the mother about fits and timing until
after he heard the general issues. And during a
mammoth 63-day hearing, Stuart-Smith watched the
world's best experts grilled on whether the vaccine
could cause serious harm. He probed clinical
medicine, animal experiments, biochemistry and
epidemiology. He studied scores of individual cases.
It was the most exhaustive such inquiry ever held.
For
all this effort, the trial turned on one key
question: was the National Childhood Encephalopathy
Study compelling evidence of a link between the
vaccine and brain damage? The NCES was, after all,
the only scientifically-controlled study ever to
point to such a link. If this study stood up, as at
first sight it seemed to, that link was probably
real.
In
passing, the judge reviewed a number of cases, only
to find that they again became vanishing victims.
"The parents' account is inconsistent with a
previous account given by them," he noted for
one child. "Onset of symptoms was in the
previous October; it was changed to an onset of less
than 24 hours on the basis of the parents' account
given many months later," he said for another.
"The parents' claim, as recorded in the
documents, that the child was normal before
vaccination, is plainly incorrect," for a third.
In
spite of these oddities, the NCES was compelling,
because it appeared to find some clear-cut victims.
During the three years for which it ran, hospitals
notified Professor Miller of 241 children who he
recorded as mentally handicapped after an illness
and, of these, seven had apparently received DTP one
week or less before the onset. Coincidence was
possible, but a statistical comparison with healthy
children's histories produced the 1-in-310,000 risk.
But
after the judge ordered the patients' notes to be
produced from the Central Middlesex Hospital, against
Miller's objections on grounds of confidentiality,
another crop of victims disappeared. Of the seven
children, who the professor had said suffered
permanent brain damage, one had Reye's syndrome,
which is not caused by vaccination. Three were
afflicted by viruses. And the remaining three cases
were not brain damaged at all: records showed that
the children were normal.
Based
on these cases, the vaccine's assumed risk of
1-in-310,000, published in the blue book, collapsed
to approximately nil.
There
was also something else very odd about the NCES.
During the Kinnear and Loveday hearings, two
contradictory computer print-outs were discovered
which gave scores for children's abilities. And,
although they referred to the same examinations of
the same patients, the more recent print-out figures
were erratically lower, making healthy children
appear to be handicapped.
"Do
they seem to you to be somewhat curious?" the
defendant Wellcome's lawyer asked Miller.
"Yes,
on the face of it, they do," the professor, who
said he had not compiled either set of figures,
replied. "And I cannot offer any
explanation."
In
March 1988, Stuart-Smith rejected the vaccine-brain
damage link, without hearing from Susan Loveday's
mother. He said that when he started out on his
inquiry he was "impressed by the case
reports" and by the "widely-held
belief" that rare injuries occurred. "I
have now come to the clear conclusion," he said,
"that the plaintiff fails to satisfy me on the
balance of probability that pertussis vaccine can
cause permanent brain damage."
*****
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