Adverse reactions: Why some parents fear vaccines
Eye of the needle … Meryl Dorey, founder and president of controversial anti-vaccination group the Australian Vaccination Network. Photo: Naz Mulla
It's raining softly across the Northern Rivers and everywhere is the smell of wet jungle. This region of north-east NSW - encompassing the Ballina, Byron, Kyogle, Lismore, Richmond Valley, Tweed and Clare Valley councils - is Australia's organic heartland, a lush stretch of green that hangs like ivy over the Queensland-NSW border. Cynics often dismiss these shires as refuges for tree-hugging, granola-grazing hippies. Educated lefties who live here say it's all about getting back to nature.
But the Northern Rivers is also a public-health black spot, notorious for flash outbreaks of infectious, preventable diseases. In August and September 2010, measles infected 14 people, mostly high school students, in the Tweed area, after an unvaccinated teenager returned from an overseas holiday. Last year saw a big jump in the incidence of whooping cough in the region, with 493 cases reported between the Tweed and the Clarence rivers.
Childhood immunisation rates here are among the lowest in the country. Many parents distrust conventional medicine. One in 10 kids aged under 10 doesn't have a single vaccination recorded against their name. Similarly low vaccination rates can be found elsewhere in Australia, but the Northern Rivers can claim the dubious honour of having the highest percentage of parents who don't immunise their children on purpose, believing vaccines may do their kids harm. In the Byron Shire town of Mullumbimby alone, a fifth of all parents identify as conscientious objectors to vaccination.
The damage done? … Vaccines rely on everyone getting vaccinated to work. Photo: Getty Images
The Northern Rivers is also home to the woman who has spearheaded the vaccine rebellion in Australia for nearly two decades. Expat American Meryl Dorey has been called a lot of things over the years: an idiot, a dangerous liar, a hazard to children's health. Yet with her sensibly cut greying hair and a necklace of braided fake pearls, the founder and president of the Australian Vaccination Network (AVN) resembles a kindly aunt or a politician's wife from another era. Still, she is well aware many people loathe her.
"I so get where they're coming from," she says. "Because until my own child reacted [to vaccines], I never questioned vaccination. And I thought anyone who did question it was crazy and irresponsible. It's a passionate issue, because what are we more passionate about than our health and our children?"
We are talking in a cafe close to Dorey's home in Bangalow, part of Byron Shire. She sheepishly apologises for being boring with her choice of lunch (chicken schnitzel, cappuccino), before handing me copies of her slick monthly magazine, Living Wisdom. Alongside alternative-lifestyle-themed headlines such as "Ayurveda for Children" and "Free Range Pigs: Healthier and Happier", each issue also boasts blunt headlines about the perils of childhood vaccinations: "A Jab in the Arm or Much More?", "The Needle and the Damage" and "A Voice for the Vaccine Injured".
Dorey believes her eldest child was one of those "vaccine injured" kids. He was an unusually unresponsive infant from birth, "a really floppy baby" who would sleep the entire day if left alone. After Dorey took him for his two-month MMR (measles-mumps-rubella) vaccination, he ran a high fever within an hour. After another four or five hours, he woke from a nap screaming, then developed a weird chest rattle and a deep snore.
Two months after his initial shot, Dorey took her son back for his boosters. Her GP asked whether her son had had any reactions from the last shot. Horrified by the implications, Dorey asked whether the last vaccine might have been responsible for her son's resulting health problems, and he said it was possible. Years later, Dorey heard this GP hadn't even vaccinated his own children. After reading DPT: A Shot in the Dark - a still-controversial 1985 book about the apparent dangers of the diphtheria-pertussis-tetanus vaccine - Dorey was certain her son's vaccination was linked to the fact he was now on the autism spectrum. "And it made me angry," she says. "Really, really angry."
Of Dorey's four kids, only one - her eldest son - is fully vaccinated. Her second child is "partially vaccinated" and her third is vaccinated only against polio. Dorey's youngest child has never felt the sting of a vaccination needle.
I suggest that leaving her fourth child completely unvaccinated shows a huge degree of faith. "No," Dorey says. "Vaccinating shows a huge degree of faith."
And Dorey is determined to push that message. In early 2009, after their four-week-old baby, Dana, died from pertussis (whooping cough), Toni and David McCaffery - who live in the same region as Dorey - went public and urged others in the area to immunise their children. Soon after, the McCafferys received letters, emails and blog comments from AVN members, questioning the exact nature of Dana's death. "Isn't it incredible," Dorey wrote on a Yahoo website forum, "how they have made Dana into a martyr because she supposedly died from whooping cough?"
Such actions have attracted the attention of health authorities. In 2010, the NSW Health Care Complaints Commission (HCCC) ordered the AVN to place a warning on its website stating its information "should not be read as medical advice". When the AVN refused to comply, the NSW Office of Liquor, Gaming and Racing (OLGR) revoked the AVN's charity status. As a result, Dorey says, AVN membership eroded from 2500 or so members to between 800 and 900.
When we meet, however, Dorey, 54, is cheerful and upbeat. For the first time in ages, the AVN has scored some major wins. Over the Christmas break, Dorey was invited to speak at Queensland's Woodford Folk Festival. In February, Dorey won an appeal against the HCCC ruling in the NSW Supreme Court, which found the HCCC did not have the authority to issue a public warning about the AVN. In mid-April, the AVN also had its status as a legitimate charity reinstated by the OLGR in response to their Supreme Court win. Dorey and her supporters are delighted. Others are horrified.
Fear of vaccines is nothing new. in 1721, the US city of Boston was hit with a smallpox epidemic, a hyper-contagious horror that covered its victims with reeking, weeping boils before killing them. A local reverend named Cotton Mather spearheaded an experiment with a local physician named Zabdiel Boylston that would, theoretically, make people immune to the disease. Boylston milked pus out of existing smallpox patients, stored it in jars, cut a slit into healthy people with a quill and applied the putrid liquid. To begin with, Boylston variolated his six-year-old son, his slave and his slave's toddler. All of them ran intense fevers for days, but survived and became immune to smallpox.
Horrified by the idea of purposeful infection, other physicians in Boston demanded Boylston stop immediately. This was an age when plagues were seen as divine judgment, and the idea of variolation seemed not only counter-intuitive but sacrilegious. When Mather and Boylston continued to variolate, someone threw a firebomb through a window of Mather's house with a note attached: "Mather, you dog. Damn you, I'll inoculate you with this."
The reasons why we fear vaccination have changed but remain strong. For Diane Bigg, a clinical nurse consultant at Tweed Hospital, an average day might involve vaccinating between 25 and 30 children. In more than 20 years of nursing, Bigg has immunised thousands of children and has never encountered a single adverse reaction. But of the parents she sees, many are still anxious that the standard MMR vaccine will make their child autistic. "Often parents have heard stories, none of them validated," says Bigg.
Marianne Trent, the immunisation co-ordinator for the North Coast Public Health Unit, sighs when she hears this. Trent often finds herself educating and placating concerned parents who have heard that combined vaccines - like MMR - can overload a child's immune system. Babies have a thymus gland that, in proportion to adults', is far bigger and more capable of producing T-cells than they are. "It will never, ever be in a position to develop immunity better than it does now," she tells parents. "By giving vaccines, it's actually developing their immune system, not depressing it. You've got parents who are looking at pages and pages of stuff on the net, but not being able to read them in the right context."
Theories promoting possible links between vaccines and autism have been floating around for years, but were popularised in 1998 by British researcher Dr Andrew Wakefield, whose paper on the subject was published in British medical journal The Lancet. That same year, London's Royal Free Hospital held a press conference of five doctors, including Wakefield and led by virologist Professor Arie Zuckerman, to discuss Wakefield's initial findings that potentially cast doubt on the safety of the MMR vaccine. Wakefield's theory was that when you combined three vaccines - measles, mumps and rubella - it altered a child's immune system, allowing the measles virus in the vaccine to infiltrate the intestines; certain proteins, escaping from the intestines, could then reach and harm neurons in the brain. Before the conference, however, all five doctors had agreed to recommend that parents continue using the MMR vaccine, pending further research.
"Tension rose as the event progressed," wrote British journalist Jeremy Laurance, "and by the end Wakefield was coolly urging parents to give their children single vaccines at annual intervals, while Zuckerman was on his feet, banging the lectern in frustration as he insisted that the MMR vaccine had been given to millions of children around the world and was safe."
In the years following, MMR vaccination rates in the UK plummeted to below 80 per cent in some areas, triggering measles outbreaks. Then, in 2010, the UK's General Medical Council declared Wakefield's research fraudulent and unethical: it wasn't just misleading, but also subjected children to unnecessary procedures such as unapproved colonoscopies. Wakefield was struck off the Medical Register. In 2010, the editors of The Lancet formally retracted the paper and, after a comprehensive review, the BMJ medical journal in 2011 declared Wakefield's research "an elaborate fraud".
Meryl Dorey had been spruiking Wakefield's claims as gospel. After the BMJ story broke, journalist and broadcaster Tracey Spicer interviewed Dorey on radio. On air, Dorey still insisted the link between vaccines and autism was "far from put to bed". Spicer rebutted with statistics, and when Dorey tried directing listeners to the AVN website, Spicer furiously hung up on Dorey.
"I didn't come at it thinking, 'This woman is a crackpot,' " Spicer says now. "I came at it thinking, 'This woman has a child who's had problems, but perhaps she'll now realise that she herself has been misled as well.' So I was surprised when she was so vigorous in her defence of Dr Andrew Wakefield ... I thought, 'How could you, in the face of all this, continue to spread this misinformation?' "
Mia Freedman, publisher of the parenting and news website Mamamia.com.au, has run numerous stories slamming Dorey's claims and encouraging parents to vaccinate their kids, but is reluctant to talk to Good Weekend. As she explains over email, "It's like profiling someone who believes the earth is flat or that gravity doesn't exist. There aren't two sides to this story. On one hand there's science. There is no other hand."
Dorey won't have a bar of that. "I don't see what having a medical background has to do with it," she says. "Is Bob Brown allowed to make comments about nuclear energy even though he's not a nuclear physicist?"
I ask Dorey whether there could ever be a situation that would throw doubt on Wakefield's conclusions for her. "Oh, absolutely," she replies. "I try very hard when I read medical research to keep an open mind."
Did the Wakefield case cause any doubt in her mind about his research? "No, not at all," she says. "I knew he was being scapegoated, because there is so much money involved in vaccination."
One of Dorey's chief concerns is that big pharmaceutical companies have made fatal mistakes before. In his book The Cutter Incident, American paediatrician and vaccine expert Dr Paul Offit recounts what he calls the worst biological disaster in US history, when 200,000 people were inadvertently injected with a live virulent polio virus manufactured in California's Cutter Laboratories in 1955. Seventy thousand people became ill, 200 were permanently paralysed and 10 died.
More recently, in 2010, the West Australian Health Department offered parents a free influenza vaccination for their children to protect them against a new strain. That April, Perth mother Kirsten Button took her four-year-old son, Cooper, and 11-month-old daughter, Saba, for the flu shot. That evening, Saba had a temperature of 40.2 degrees and was admitted to intensive care. After a series of seizures, Saba acquired a brain injury and is now disabled. It is possible she will never walk unassisted. It was later revealed more than 100 other children in Perth had allergic reactions to the same Fluvax vaccine, including high fevers, vomiting and seizures.
Eventually, it was found Fluvax had triggered febrile seizures at 10 times the expected rate. It was then banned for any child under five. Unlike its predecessor, Panvax, Fluvax had not been clinically tested in children before the Therapeutic Goods Administration approved it for mass vaccinations. Last November, pharmaceutical giant CSL - the makers of Fluvax - added a warning for the 2012 batch of flu vaccine.
But Offit tells me allergic reactions to vaccinations are rare and often overstated. Offit co-invented the rotavirus vaccine, and his wife is also a paediatrician. Both recall the time she assisted a nurse in administering a standard vaccine to a four-month-old baby. "While my wife is drawing the vaccine into the syringe, the four-month-old has a seizure and goes on to have a permanent seizure disorder," Offit says. The baby was later diagnosed with epilepsy. "If my wife had given that vaccine five minutes earlier, there is no amount of statistical data in the world that would have convinced that mother of anything other than the vaccine caused the problem, even though it didn't. The question every parent has to answer is: 'Do the benefits of this procedure - clearly and definitively - outweigh its risks?' For vaccines, that is true."
Still, Australian parents are expected to subject their child to more than 30 vaccinations before his or her fourth birthday. For many parents it is a big ask, and not all accept the orthodoxy that it's necessary. Antonia Hayes, 29, is one mother who is reassessing her child's vaccination options. Hayes lives in inner-city Sydney and is mother to Julian, who will turn 11 in October. Just after Julian was born, he had a brain haemorrhage and had to undergo neurosurgery. When Julian turned four, he was due for a polio booster shot and Hayes's GP explained the possible side effects: fever, flu-like symptoms. Immediately after the doctor vaccinated Julian, he went pale, fainted, then had an irregular heartbeat that persisted for a fortnight.
Hayes says she regrets going online to find information ("It makes you paranoid about everything"), but adds that she was able to quickly dismiss theories surrounding vaccination and autism, as the links - at least to her - seemed tenuous. Now Julian is due for another booster, and she's decided against vaccinating him again. "I know that's quite selfish, because if nobody vaccinated their kids, polio would still be around. But I definitely think there's an over-zealousness in watching kids get four vaccinations in the first 18 months of their lives."
Among some parents who don't vaccinate their children, there is a logic that goes like this: if your child is vaccinated, why is my unvaccinated child any of your business? Your child will be protected from disease, anyway. Offit says vaccinations do not work like that. "One: some people can't be vaccinated," he says. "Two: no vaccine is 100-per-cent effective."
Statistically, Offit adds, it is more likely for a vaccinated person to get measles in a largely unvaccinated population than for an unvaccinated person in a highly vaccinated community. In other words, vaccines rely on everyone getting vaccinated to work. Vaccination is less about individual protection than entering a social contract to protect the entire community. It is not just about your own child. And for parents, that is a hard sell.
People who have reservations about vaccinations are not stupid or uneducated. In 2004, an Australian Childhood Immunisation Register survey of 462 parents whose children weren't completely immunised showed that these parents were, on average, more likely to have had a tertiary education. Still, to accept what Meryl Dorey says, you also have to believe the following things. That there is a networked, disciplined conspiracy among doctors, government health bodies and vaccine-makers, who will do anything to earn money even at the expense of children's health. That pharmaceutical companies are not concerned about harmful reactions to the vaccines they develop, and would allow PR nightmares surrounding injured children to continue, unchecked and unaddressed.
Arthur Allen, an American vaccine expert and author of Vaccine: The Controversial Story of Medicine's Greatest Lifesaver, finds this all rather sad. "Most people in the vaccination community are really interested in any risks of vaccination and immediately investigating it," he says. "They're not closing their ears to it. People who investigate these things are looking for something to go wrong, because they do really want them to be safe."
On the whole, however, Australians are doing okay when it comes to vaccination uptake. Globally, says Dr Julie Leask of the Sydney-based National Centre for Immunisation Research and Surveillance, our vaccination rates are relatively robust. Of today's two-year-olds, 94 per cent will receive complete vaccinations. Of the remaining six per cent, Leask says half of their parents are concerned about safety, while the others have been delayed due to practical issues, like access to doctors. If the AVN is having an impact, it's not a particularly impressive one.
Still, Leask says conscientious objectors do pose a real threat to their own communities. "The problem is that the parents who refuse vaccinations cluster in certain regions of Australia. And if you want to control a disease - measles, for example - you need to have more than 95 per cent of people vaccinated against it. If fewer than 95 per cent are vaccinated, then measles can take hold."
Marianne Trent says that after years of having to deal with the AVN and Dorey's demands for public debates ("I'd rather spend my time talking to mothers," she says), she reckons the AVN's influence is overrated. "They're a little organisation in a big world." Trent may have a point. Dorey's magazine might look great, but during their Supreme Court case - which gave the AVN huge amounts of publicity and internet interest - the AVN website remained "down for maintenance" for months.
At the cafe, I suggest to Dorey that the conversation we're having right now is an incredibly privileged one. Dorey nods, having heard this before. "We can take vaccines for granted," I say, "while Bill and Melinda Gates raise money for vaccinations in the developing world ..."
"And they believe in it, I'm sure," Dorey says.
"I don't. What the developing world needs is clean water, good food and an end to the wars that are killing people."
"What are you more afraid of," I ask, "whooping cough or its vaccine?"
Dorey smiles. "I'm more afraid of ignorance."
When I tell her that doesn't answer my question, Dorey laughs brightly. "I think it's a really good answer!" she says.
In any case, Dorey gives the impression whooping cough isn't all that bad. She says it can be treated with alternative remedies. When her husband and all their children contracted it years ago, they treated it homeopathically. I am quietly appalled. Two years ago, I contracted whooping cough (even though I had been vaccinated as a child; immunity recedes as we age). For three months I suffered from an uncontrollable racking so intense I wept and almost vomited every night. Surely in babies, I suggest to Dorey, the disease is far more dangerous and warrants vaccination.
"If it were me," she says, "I would use homeopathy."
"What is in it exactly?" I ask.
"Nothing," she says, a little mysteriously. "It's energy medicine, like quantum medicine." She pauses, then laughs. "I'm not a homeopath, so I'm probably not the best person to tell you exactly how this works."
But because she is Meryl Dorey, and because she's here to help, she proceeds to explain it to me anyway.