Why aren’t “good” parents vaccinating their children, asks Joanna Wane, and are they putting the rest of us at risk?
Wedging the Pebbles into a small fold of pink, scarred flesh where her arm used to be, she shovels them into her mouth. Then she picks up the whole bowl and pours the last ones straight down her throat. Grinning, she takes a swig from her water bottle and burps. “Don’t be a Gilligan,” says her dad, Perry Bisman, kissing her as she rubs the bristles on his cheek.
Six years ago, Charlotte’s body started to die as poison spread from the black, wilting tips of her fingers and toes to the swollen, blistering skin on her arms and legs.
One of the youngest survivors of meningococcal septicaemia, she was six months old when all her limbs were amputated in an eight-and-a-half-hour operation at Auckland’s Starship hospital, with the media virtually camped outside her door. Her first words were “Sky Tower”, because that’s what she could see through the window from her bed.
This November, “Baby Charlotte” turns seven and she knows exactly what she wants for her birthday: a Wonder Woman party. Her mum, Pam Cleverley, has already bought her the outfit. Now the Waiheke Island schoolgirl has bionic legs to match.
Most people bring back a T-shirt or baseball cap from a trip to the States. At the end of April, Charlotte came home with a pair of laser-moulded prosthetic legs. Worth $US65,000 ($89,000), they were custom-made for her as a gift from the company’s owner, Matt Daniel, an American amputee who met the family last year at a camp for people with limb loss. She wore them to school on her first day back, but for Charlotte the real highlight of this year’s camp in California was learning to wrestle – something she turned out to be pretty good at.
“The kids love being there because it’s one of the few times they’re the normal ones and anyone with all their limbs is a freak,” says Bisman, who reckons it’ll take her a while to get used to new legs, even flash ones like these that finally fit properly. “Apparently you can do cartwheels in them.”
Charlotte had missed out on the meningococcal B (MeNZB) vaccine by just a few weeks. As she lay in hospital fighting off one infection after another, a $200 million immunisation programme was being fast-tracked into action by the Ministry of Health. In a controversial nationwide campaign, the vaccine against a particularly virulent strain of meningitis was offered free to everyone under the age of 20 – short-circuiting an epidemic that had infected thousands of people since 1991 and left 220 dead.
Within two years, more than a million children and teenagers throughout New Zealand had been given their first dose. One of them was Charlotte. “After all the operations she’d been through, watching her have a needle stuck in her arm again was gut-wrenching,” says Bisman. “But she had her three shots as soon as she was well enough, because she could have been infected again.”
Concerned by what he saw as scaremongering over the vaccine’s alleged side- effects, he went public to support the ministry’s campaign. Although the programme ended in 2008, when the dwindling number of reported cases no longer warranted mass immunisation, he’s still on message.
“You hear all sorts of stories, but that’s all they are. Stories. The evidence just isn’t there,” he says. “We’re living in an age of disinformation and the anti-immunisation protest movement has some really active, intelligent people who are very good at spinning an argument to make pseudo-science look real.
“We have friends here who have seen everything Charlotte’s gone through and still refuse to vaccinate their kids. It’s their choice, but it staggers me.
“At the end of the day, do you want the possibility of what happened to Charlotte to happen to your own child? If it’s a disease that’s preventable, why would you allow that possibility, instead of taking a very small, calculated risk by having the vaccine?”
It’s a question health officials found themselves asking last year, when a Unicef report on child welfare ranked New Zealand’s immunisation rates among the worst in the OECD, particularly for whooping cough (pertussis) and measles.
In 2007, only 75 per cent of our two-year-olds were fully immunised. A Government campaign, largely centred on motivating district health boards and improving access to preventive healthcare in poorer communities, has pushed the strike rate to 85 per cent. That’s still below the numbers needed for “herd immunity” to prevent infections circulating – yet another example of how far we lag behind our neighbours across the Ditch. Babies born in New Zealand are five times more at risk of catching whooping cough than in Australia, where a range of initiatives including cash payments for parents and GPs have helped push up compliance to around 94 per cent.
In March, a nine-month-old baby was admitted to hospital in the Hokianga with measles after an outbreak in an extended family community where most of the children hadn’t been vaccinated. So far, 31 more cases have been reported in Northland.
A much more infectious disease than swine flu, the measles virus was brought into the community by a visitor from India. It’s then believed to have spread to Wellington after a group travelled south to support Hokianga farmer Sam Land and two other men charged with damaging the Waihopai spy base.
Another case in Brisbane has also been linked to the outbreak in the Hokianga.
Mothers who would once have immunised without question as the right thing to do now see it as a personal choice based on informed consent. The modern child is a precious, limited-edition resource. And deeply committed modern parents don’t want anyone, particularly the Government, telling them what to do.
The idea that building up natural resistance is more effective than artificially stimulating our immune systems isn’t a new one. “Homeopathic immunisations” are available from some natural-health centres, and vaccination is actively opposed by many chiropractors and osteopaths (whose own claims are often met with a blind faith not extended to conventional medicine).
In a climate where the trend is to de-medicalise childbirth, midwives and ante-natal classes often present immunisation as a debate where both sides are given equal weight. One mother spoken to for this story said that while her own GP had no doubts about vaccination, her chiropractor was strongly against it. “Why should his opinion have any less validity?”
Some talked of friends who’d removed their babies from Plunket after feeling pressured into a decision, while several said they were dismissed as neurotic and “difficult” if they raised concerns.
North & South witnessed one extremely tense confrontation between a first-time mother and the practice nurses at her local health centre when she wanted her son vaccinated for whooping cough but not Hepatitis B or Hib (haemophilus influenzae type b).
“I’m breastfeeding my baby and he isn’t in daycare so he’s not high risk,” says the mother, who gave birth under the care of an obstetrician and describes herself as pro-Western medicine. “But when I asked about staggering his shots, I was treated as an inconvenience and as if I was stupid.”
On maternity leave from her legal firm, she’s done so much research on immunisation that she can quote mortality trends for each of the diseases. “I’m not anti-vaccination at all; it’s just being informed about what you’re putting into your child. And the choice of staggering or delaying isn’t made clear.”
Auckland GP Michele McVie admits she was “flummoxed” to come across educated, professional parents skipping shots after she emigrated from South Africa. During her training in Johannesburg, she saw kids from both poor and privileged homes hospitalised with complications from measles while tiny babies with whooping cough were hooked up to respirators, exhausted from the effort of trying to breathe. Anxiety about possible reactions to a vaccine came low down on the list.
“When I think of the hand-holding we do here, the time spent encouraging people to come in, and the care around it…” she says. “Somehow medicine is seen as having an ulterior motive, fed by drug companies which don’t have the patients’ wellbeing at heart. But I’ve seen these diseases first-hand and for me, it’s a no-brainer.”
While only a few hardline activists in what’s been called “the vaccine war” rage about biological warfare and a global con, an estimated 30 per cent of New Zealand parents are swinging voters. And it’s hard to convince them of threats they no longer see.
Hailed as medicine’s greatest triumph, vaccination is credited with increasing our life span by 30 years over the past century – driving many diseases underground.
In the 1920s, diphtheria was the most common killer of teenagers in the United States; it’s unheard of now. Photos of hospital wards lined with patients in iron lungs during the 1950s polio epidemic look like something out of a science fiction movie. So when the University of Google throws up harrowing sites like the “international memorial for vaccine victims”, our perception shifts over where the real danger lies.
After Dr Andrew Wakefield’s (now thoroughly debunked) theory linking autism with the MMR vaccine was published in 1998, a slump in immunisation rates saw mumps reach epidemic levels in Britain and the first death from measles for 14 years.
There are few absolutes in medicine. Vaccines aren’t 100 per cent effective and they can cause side-effects; in rare cases some of them are severe. It’s the same risk-to-benefit calculation every time we jump into a car, despite the road toll, or board a plane – taking on trust the complex aerodynamics that stop it plummeting from the sky. One in a million babies given the MMR vaccine will develop encephalitis (brain inflammation); one in 1000 get encephalitis from the measles.
The centre for Adverse Reactions Monitoring (CARM) was set up at the University of Otago in 1965, after the thalidomide epidemic, to look for patterns of possible side-effects that might raise alarm. Since then, there have been nine reports of anaphylactic shock associated with a vaccine; one of those patients, who’d received both the tetanus vaccine and penicillin, died.
The death of another elderly patient after a flu vaccine may have been caused by an anaphylactic reaction or an unrelated pre-existing medical condition. The only other reported death, of a teenager six months after her third Gardasil vaccine, is before the coroner.
Proving cause rather than coincidence is tricky. A link between flu vaccines and extremely rare cases of temporary paralysis with Guillain-Barré syndrome can’t be confirmed because the numbers are so small. (However an episode of flu itself is known to raise the risk of developing the syndrome.)
New Zealand has the highest reporting rate of adverse reactions in the world, according to CARM director Michael Tatley – which he ascribes to high levels of vigilance here. More than half are about vaccines, although he stresses a reported reaction isn’t proof of a causal link.
Tatley is confident it’s an effective system and that health authorities are quick to act on warning signs. In 1999, an early rotavirus vaccine was taken off the market in the United States because it was linked to an increased risk for intussusception, a type of bowel obstruction.
“I haven’t seen anything yet, with all the literature I’ve read and all the data we see here and all the networks we’re part of, that suggests any of the vaccines [currently on schedule] are any cause for concern,” he says. “An awfully large number of people have been exposed to vaccines and if they’re as bad as some of the anti lobby are suggesting, there must be a lot of really sick people out there. And we just don’t see them.”
In April, Australia suspended seasonal flu shots for children under five after numerous reports of febrile convulsions (a common childhood problem associated with high fever). A two-year-old girl in Queensland died within hours of receiving the vaccine, which protects against the H1N1 swine flu virus, although an initial autopsy showed no sign it was to blame.
Here, three cases of febrile convulsions in under-fives have been reported after the same Fluvax injection. That’s not an unusually high number, but the Ministry of Health is playing it safe and has advised giving the brand Vaxigrip to young children instead while investigations are made.
Parents understandably dread side-effects, especially in a precious newborn baby, but mild reactions such as a rash, fever, or a child who’s grizzly and off-colour for a few days are healthy signs the vaccine is working.
Essentially, immunisation tricks your body into thinking it’s under attack by exposing it to antigens (inactivated molecules that stimulate your immune system to produce antibodies but can’t cause the disease). Your immune system then mounts a response in exactly the same way it would if you had encountered those antigens in the wild – but without the unpredictable and potentially dangerous effects of actually being infected.
“A lot of people don’t understand how it works,” says Lisbeth Alley, a nurse and immunisation facilitator with the Immunisation Advisory Centre (IMAC). “They think we’re injecting them with all sorts of toxins and mucking up their immune systems. But every time you put your finger in your mouth, you’re presenting antigens to your immune system in a very similar way.”
The belief that multiple vaccines overwhelm a newborn’s immature immune system just isn’t true, she says. From the minute they’re born, babies are designed to handle a huge influx of antigens and the younger they are, the better they respond. Improved technology also means that vaccines have been purified. Ten years ago, babies were injected with more than 3000 antigens at their six-week shots; today it’s down to around 50, even though more vaccines have been added to the schedule.
Nor does Alley recommend putting off those early-childhood shots. New Zealand data shows babies are six times more likely to end up in hospital with whooping cough if their vaccinations are delayed by as little as four weeks. “Maternal antibodies wane after six to nine months, so you want them to have developed their own immunity by then.”
On the internet, no one knows you’re not a doctor. As Alley says, anyone can set themselves up as an anti-vaccination expert and their opinion is given the same legitimacy as specialists who know the business inside out. “It does a lot of damage and someone has to respond with the science. It’s just so irrational that our Government would pay mega amounts of money to poison our kids – with no gain. That’s their argument and it’s hard to understand.”
She doesn’t like to say it, but the world has also become a more selfish place. “People feel responsible for themselves and their families; that’s where it stops. Some parents honestly believe if they feed their children organic food, keep them in a lovely, clean environment, look after them and love them, they’ll be protected. But these diseases are still out there, just under the radar, and if our community protection drops off, the risks go up hugely for everyone. We don’t live in a bubble; the rest of the world is only a plane ride away.'
To anti-vax activists, pharmaceutical companies are the equivalent of tobacco manufacturers – trading in lives for profit. And Nikki Turner is damned as their partner in crime. “How do you sleep at night?” they ask her. “You’re killing babies.”
Turner, who still works as a GP for the Auckland City Mission, set up the Immunisation Advisory Centre (IMAC) at the University of Auckland 12 years ago. Handling all the personal hate mail was tougher then.
“I’m even more committed now because most of the issues we’ve been through before and a lot of it is simply dishonest,” she says. “I still do my Catholic revision of conscience when I look in the mirror and ask if I’ve got the data right. But how could you not advocate for immunisation when you see the evidence and know the damage from these diseases?”
Turner pulls out a graph showing the number of Hib cases nosediving after a vaccine was introduced in 1992. What used to be the most common cause of bacterial meningitis in children under five – killing one in 20 sufferers and leaving a third of all survivors with permanent brain or nerve damage – is virtually eradicated here now.
“I look at that graph and I cry every time I see it. That’s what absolutely encapsulates it for me. From having 40 to 60 kids a year with Hib disease, now you only get one or two. When you get a nasty email, that’s what gets you out of bed the next day.”
In the late 1980s, Turner was working in neo-natal paediatrics in Britain during a whooping cough outbreak after false reports linked the vaccine to brain damage, causing immunisation rates to plummet.
Her best friend’s premature baby daughter had just come home from the neo-natal ward. A week later, she was rushed to hospital with whooping cough – infected by two older brothers who hadn’t been vaccinated.
“I was on call that night and actually had to save Bethan’s life when she was being transferred to Manchester and the [breathing] tube slipped out. Anne was travelling behind us and when we stopped the ambulance to put the tube back in, I knew she thought her baby had died.”
As a mother, Turner understands the grief behind the visceral anger – even hate – that she sees in some parents’ faces when she gives public presentations on immunisation. Her oldest child has a significant congenital handicap. “You want to know the reason and I’ve never found one. I’m still blaming Welsh irradiated sheep because we were in the UK when I was pregnant.”
Helen Petousis-Harris, IMAC’s director of research, understands too the vulnerability all women feel as mums – and the desire to do the best for their kids that unites them. She paid for her two older sons to have Gardasil shots to help prevent the spread of HPV. But when her third son was born in the thick of the MMR controversy, she sent him in with her husband to have the injection “and waited for him to become autistic. I knew perfectly well it was ridiculous but no one’s immune to that stuff.”
In 2007, a meta-analysis of existing research was published allaying fears that immunisation causes sudden infant death syndrome (in fact it was associated with halving the risk). A myth of our own – since exported internationally – suggests Gardasil may cause infertility in young girls. That story made the cover of a local health magazine, based on a study where huge doses of one of the ingredients, polysorbate 80, was injected into the abdominal cavity of newborn rats.
“So you should stop eating ice cream because there’s lots [of polysorbate] in that – even more in fat-free,” says Turner. “That’s a real example of creating a fallacy overnight. The thing is, you can be really well educated and still not have a clue about how to find and read the accurate science.
“It amazes me people call it the ‘immunisation debate’. There’s not an immunisation debate in science. There’s a debate about aspects of the vaccines – whether it’s the right one, what the side-effects are and how you use it, whether the formulation is safe and whether the specific disease is worth vaccinating against. But when it comes to the principles and effectiveness of vaccines, there’s absolutely no debate.'
Did he try to be brave, little James Phipps, as he held out his bare arms to be given a dose of the pox?
Smallpox was killing one child in seven across 18th-century Europe when English scientist Edward Jenner put his theory to the test: that exposure to cowpox, a much milder disease, would give them immunity.
Pus scraped from blisters on the hands of a milkmaid who’d been infected by a cow called Blossom was put into cuts on the boy’s arms. Six weeks later, after he’d recovered from a slight fever, James was vaccinated again – this time with the smallpox virus – and showed no sign of infection.
“Had the [watching] chorus but known how fully charged with the fate of man that drama was, how glorious the issue of the play!” crowed the British Medical Journal, marking the Jenner Centenary in 1896.
Who knows what happened to the milkmaid, Sarah, and her poxy blisters. But Blossom’s hide hangs in state at St George’s Medical School in London and Jenner – the “father of immunology” – is credited with saving more lives than the work of any other man. By the time smallpox was officially eradicated in 1980, it had claimed an estimated 500 million people.
There’s no doubt the vaccination industry is big business, with a global value estimated at more than £10 billion ($21 billion). In developing countries, demand often exceeds supply. But it’s also an investment. Developing a new vaccine costs up to €2 billion ($3.6 billion) and can take 20 years.
At the Malaghan Institute in Wellington, scientists are working on a more effective adult vaccine for TB. The prospect of therapeutic vaccines to treat diseases such as melanoma and prostate cancer by harnessing the patient’s own immune system also look promising.
In the end, vaccination is an economic calculation governments measure not just in lives but in the cost of medical treatment, long-term injury and time off work. Vaccines against chickenpox and rotavirus have been recommended for funding on the national immunisation schedule when it comes up for review next year. And in the not-so-distant future, needles might be replaced by nasal sprays or skin patches – an initiative one immunisation expert reckons would lift compliance to 95 per cent overnight.
A Government inquiry into our low immunisation rates finished hearing submissions last month. Whether to follow Australia’s lead and offer cash incentives is one issue up for debate.
Public demand may eventually lead to personalised immunisation programmes, says Pat Tuohy, the Ministry of Health’s chief adviser on child and youth health. However, splitting vaccines isn’t easy as individual doses aren’t available for every disease.
“It’s not a direction I would recommend we go but if it means the difference between someone opting out completely, the health system would have to listen.”
Critics have called for more transparency in decision-making and how immunisation programmes are marketed. The MeNZB (meningitis) campaign came under attack for not making it clear that protection from the vaccine was only for that specific strain of the disease and would not be long-lasting.
Perhaps the real question, ponders Tuohy, is just how informed consent needs to be. “We’re accused of withholding information, but the Immunisation Handbook has more information than anyone would need to know. But how well-equipped might someone be to critically evaluate, for example, a scientific paper? Is it a randomised control trial, a cohort study, just one case or just someone’s hypothesis? A lot of people have no idea which is likely to be more reliable than any other.”
This was originally published in the June 2010 issue of North & South.