ILLUSTRATIONS BY KYLE METCALF

Infectious Fear

The alarming decline of vaccination rates

By Naomi K Lewis

I went to the St. Joseph’s Hospital in an ambulance on my sixth birthday, paralyzed,” recalls Maxine Madison. It was December 22, 1953, in Edmonton, and Madison had polio. That year, 1,500 Albertan children contracted the disease and nearly 10 per cent of them died. Many others were left permanently disabled.

Madison shared a hospital room with five other afflicted children, including her three-year-old brother. Her parents brought a tiny Christmas tree to her bedside, Madison remembers, but she couldn’t reach the sugar cookies decorating it; she couldn’t move. She says, “After about a month of daily needles and all-over manipulations, everything came back except [use of] my right arm. …At the end of the school year I went home with a list of exercises from the doctor.” She began Grade 1 over again, with a modified desk. Her right shoulder, and her brother’s right leg, never fully recovered. Now a director at Edmonton’s Wildrose Polio Support Society, Madison suffers from post-polio syndrome; she tires easily and is sensitive to cold, pain and anaesthesia.

Alberta’s polio immunization program began in 1954. Alberta Views founder Jackie Flanagan recalls being among the first vaccinated; her mother was a public health nurse and had seen how the disease ravaged children’s bodies. Since the mid-1950s, fewer cases occurred every year. Canada now has no more new cases of polio. Not only polio, but such diseases as smallpox, measles, diphtheria and whooping cough not so long ago wreaked havoc in Alberta communities. Today, thanks to an evolving vaccine program for children, it’s difficult to find people under 60 who remember the fear and grief of those days and the horrific effects of those illnesses.

Immunization works by injecting or ingesting a harmless version of a disease-causing agent to trick the immune system into creating antibodies. According to the Alberta Immunization Strategy 2007–2017, “with the exception of clean drinking water, no other human intervention surpasses the impact immunizations have had on reducing infectious disease and mortality rates—not even antibiotics.” Since the late 1990s, however, concerns about vaccination have been building in the public consciousness, with anti-vaccination groups claiming that vaccines harm babies and children.

As a result, many parents in Canada, the US and worldwide are choosing not to vaccinate their children. Alberta in 2004 had compliance rates 5–15 per cent below target, depending on the vaccine. Immunization rates have dropped significantly since then; in 2013 only 72 per cent of children had by age two completed the province’s recommended immunization schedule—not even close to Alberta Health’s 98 per cent target. Even the 2004 rates were, according to the ministry, already too low to maintain “herd immunity,” which occurs when a critical mass of immune individuals protects those who cannot be vaccinated due to weakened immune systems and the small number for whom vaccines are not effective.

Between April 29 and July 4 this year, this province saw measles outbreaks in Calgary, Edmonton and central Alberta, with 29 confirmed cases. The year before saw 44 cases. In 2014, southern Alberta saw a whooping cough outbreak, with 34 confirmed cases. Mumps, rubella, diphtheria or even polio could easily infect an undervaccinated community too; only one traveller would need to bring the virus back from a country where those viruses still circulate.

Local vaccination rates are too low for “herd immunity”—when a critical mass of immune people protect the unvaccinated.

AHS says higher vaccination rates would have prevented these outbreaks. Fred Horne, Alberta’s former Minister of Health, is careful with his words, stressing that “blaming people [who don’t vaccinate] or shaming them” isn’t the answer, but his frustration is palpable. He says there is “no good reason for this to be happening in 2014. There isn’t really any question about the science around the clinical effectiveness or the safety of immunization, and these were diseases that were eradicated in Alberta decades ago.”

“That’s the story the government’s telling you,” counters Heather Fraser, a Toronto alternative-health practitioner and board member at Canada’s Vaccine Risk Awareness Network (VRAN). She claims outbreaks would occur with or without vaccines, because immunization and herd immunity simply do not work. Anti-vaccine advocates also argue that, in any case, the well-being of individual children—children they say are left with autism and other conditions due to vaccines—should not be sacrificed for the public good.

In some provinces, children must be immunized against specific illnesses in order to attend school, but in Alberta, doctors, lawyers, scientists and politicians—including Fred Horne—shrink from the idea of mandating childhood vaccination. They argue such a law could make parents feel cornered and even more determined to resist. Moreover, Horne says, mandating vaccines would run counter to Alberta’s prioritization of individual choice. Instead, he says, the vaccine-wary must be won over.

Meanwhile, the debate becomes increasingly heated. The conversation resembles any between two paradigms in which opponents necessarily misinterpret every argument made by the other. In this case, both sides agree on one thing: that children’s well-being is at stake, even their lives.

In 1998 University of London gastroenterologist Andrew Wakefield published a study in The Lancet on a small group of autistic children. His results ostensibly demonstrated a link between the MMR (measles, mumps, rubella) vaccine, digestive issues and autism. That study was later debunked, and Wakefield’s medical licence was revoked for unethical research methods. However, says Maureen Bennie, founder of Calgary’s Autism Awareness Centre, “Wakefield… was able to completely undermine the worldwide vaccination program.”

Actress Jenny McCarthy, supported by her then-husband, Jim Carrey, took up the cause in 2004, when their son was diagnosed with autism. McCarthy claimed vaccines had caused the condition, and used all manner of TV programs, including the Oprah Winfrey Show, to tell parents. The world took notice. By the time Wakefield’s study had been exposed as a sham, belief in the vaccine–autism link had taken hold, spread and mutated. Evidence provided no antidote, because the belief was rooted not in science but in hysteria.

The Vaccine Risk Awareness Network’s slogan is “Your Child, Your Future, Your Choice.” Notions of owning our bodies and our children’s bodies, along with appeals to personal liberty, are mainstays of anti-vaccination arguments. But those ideas are highly problematic. Our bodies and our children’s bodies are not, first of all, self-contained in the way VRAN implies. “You vaccinate not just for yourself,” says Timothy Caulfield, who holds a Canada Research Chair in health law at the University of Alberta. “You vaccinate for the community…. You participate in a communal act.”

Also parents are not entitled to put their children in danger—however pure their intentions. In a liberal society, people are perfectly entitled to risk their own lives, says Queens University bioethicist Udo Schuklenk. But children “are not property that [parents] can treat as they feel fit.” The state has an obligation to protect children, including from their parents. “Typically… we allow parents to make bad choices for their children,” he says. “But we always draw the line where there’s a serious risk of bodily harm.” For example, he says, Jehovah’s Witnesses are allowed to refuse blood transfusions but are not allowed to make that decision for their children.

Caulfield says it’s hard to quantify just how much harm anti-vaccination sentiment is doing, but that the measles outbreaks across Alberta are certainly attributable, in large part, to low vaccination rates. As former minister Horne explains, in a school with a low vaccination rate, one infected child can spread a disease quickly.

Calgary pediatrician Dr. Peter Nieman has practised for 27 years and is president of the Alberta Chapter of the American Academy of Pediatrics. He frequently speaks with parents concerned about vaccinating their children, he says, and provides the facts. He explains that vaccines are safe and effective and describes how they have, through herd immunity, eradicated devastating illnesses that wiped out millions of our ancestors. He tells patients that vaccines with significant side effects do not remain in circulation. Plus, Nieman tells wary patients, his own children have received all their vaccines, in accordance with Alberta Health’s schedule. Doctors wouldn’t vaccinate their kids, he says, if there were any reason for suspicion.

Three kind of parents visit his office, Dr. Nieman says: those who don’t need to be convinced to vaccine their children, those who are afraid and need more information, and those who will never be convinced. Offer as many sound arguments as you like; that third group will not budge. He compares fear of vaccination to fear of flying: Some people remain afraid even if an expert explains the mechanisms by which a plane stays aloft, making clear the minuscule risk of mishap.

Heather Fraser, the board member at VRAN, exemplifies this third kind of parent. She wrote a book called The Peanut Allergy Epidemic, linking allergies and vaccines. She says VRAN is the voice of truth. The kind of research she recommends amounts to searching blogs that quote parents convinced that vaccines killed or injured their children, replete with vague allusions to “studies” and accusations of conspiracy and cover-up.

Caulfield says that many people who don’t vaccinate misperceive relative risk. “I always find it fascinating when you see people that won’t vaccinate their kids but they ride their bikes without helmets,” he says. “They won’t vaccinate their kids but they have a trampoline in their yard.” While vaccines have small risks, the risks associated with the illnesses vaccines prevent are great. For instance, the measles vaccine occasionally causes seizures, but not as often as a measles infection does.

Why does a vaccine seem more threatening, to these parents, than a trampoline? For reasons more emotional and more complex, surely, than a simple miscalculation of the odds. For one thing, some parents are suspicious of vaccines as “unnatural”—but as Schuklenk told the Calgary Herald in May, “To say you don’t want a vaccine because it’s not natural is ridiculous. Anti-cancer treatments are not natural, treating a broken arm is not natural. The whole point of medicine is to deal with the disaster that is nature.”

Vaccine-skeptical parents are also, more understandably, terrified of unexplained and incurable medical conditions. Many are mistrustful of authority. Meanwhile, those who decide against vaccination and speak about it are often attacked viciously by their opponents. The conversation about vaccination frequently reaches a near-hysterical pitch, and not surprisingly, considering what seems at stake: our health, our lives, the health and lives of our children. The sanctity of our bodies. The invisible threats of pathogens, chemicals, faceless corporations. The blood-deep vulnerability of neighbours to neighbours, children to adults and citizens to governments—our vulnerability to people and institutions that may be malevolent, thoughtless or misguided.

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The anti-vaccination movement thrives, as does all pseudoscience, on the irrational dressed up in a lab coat. When Fraser says she is “for consent about this procedure that we call vaccination,” she seems sincere. “I’m not anti-vax,” she says. “I’m not anti-anything. What I’m in favour of is people having full disclosure, transparency, information.”

But there’s information and there’s information, and Fraser’s advice really couldn’t be worse when she suggests speaking to parents of “vaccine-injured” children “and not to someone who did research, not a doctor.” She shows a profound misunderstanding of how science works when she cautions that “this is what they [the government] don’t want; they don’t want to talk to parents, because the parents have experienced things, and they [the parents] know things that are very persuasive.”

Fraser is encouraging people to base their decisions on anecdote and emotion rather than evidence. Stories evoke compassion, of course, and personal experience often precedes careful and objective examination. Bennie and Fraser were both led to advocacy by personal experience with their own children, born in the 1990s. Fraser’s son developed allergies, including an anaphylactic peanut allergy, the same year he received his first vaccines. She ceased the vaccine schedule and never vaccinated her daughter, who developed no allergies. Bennie’s son received the full gamut of vaccinations and developed autism. She heard about the Wakefield study and didn’t vaccinate her daughter. That child developed autism too. Each story seems to support what its teller came to believe about vaccines. But what Bennie ultimately believes in is clear thinking and scientific process, whereas what Fraser believes in is her own story.

Dr. Nieman says that while he respects Fraser’s opinion, her hypothesis that vaccines play a role in allergies is unsubstantiated. If studies someday show such a link, he adds, then he’ll believe it; but currently there is no such evidence.

However, the unwaveringly vaccination-phobic are growing in numbers, enough to endanger Alberta communities. This raises the question: Should vaccination be mandatory? What would that look like? And if individuals cause harm by refusing vaccination, are they potentially liable?

In the US, vaccination is mandatory for schoolchildren, though different vaccines are mandatory from state to state. In Canada, vaccination is not mandatory under federal law, but children in Ontario and New Brunswick cannot be registered for school without immunization records for diphtheria, tetanus, polio, measles, mumps and rubella. In Manitoba, students not vaccinated for measles must stay home during an outbreak. That said, parents need only fill out a form claiming religious or philosophical convictions to exempt their kids.

Vaccine-skeptical groups often claim mandatory medical procedures violate the Constitution Act, 1982. The U of A’s Caulfield explains that they are referring to section 7, which states, in broad terms, that “you can’t infringe on an individual’s autonomy.” However some infringement on autonomy can be considered constitutional, he points out, such as breathalyzers and mandatory confinement. Add to that seatbelts, child car seats and motorcycle helmets. It’s not yet clear on which side of that line vaccination falls, he says.

Horne says unvaccinated children in some Alberta communities have been asked to stay home from school until a measles outbreak passes, but he stresses that the government has no plan to mandate vaccines. “That’s not really the way we’ve done things in Alberta,” he says. The letters he has received from vaccine-wary parents all stress choice. Parents want to feel in control of their children’s well-being.

Caulfield, who has received a research grant to tackle the legal issues bound up with falling vaccination rates, says, “In liberal democracies, having a mandatory anything is seen as a last resort. In addition, you want to make sure you have enough evidence not only that the treatment will work but that making it mandatory will have the desired outcome.” Fraser and her ilk would only feel more afraid, threatened and determined in the face of such a law, he suggests. Still, Caulfield adds cautiously, Alberta is perhaps “nudging toward where [mandatory vaccination] is becoming a more viable option.”

Even if we are unlikely to see mandatory vaccination anytime soon, failure to vaccinate may well lead to legal liability, Calgary civil-suit lawyer Chad Babiuk explains. He identifies three scenarios in which potential liability could arise. First, individuals could be indictable under the Criminal Code provisions dealing with negligence and failure to provide the necessities of life. This year, Calgary mother Tamara Lovett was charged with criminal negligence (charge pending) after she treated her son with holistic medicine instead of antibiotics and he died of an easily treatable infection. Babiuk says we will likely see the same provision relied on in cases of failure to vaccinate leading to harm.

Secondly, under Alberta’s Child, Youth and Family Enhancement Act, child welfare can apprehend children whose parents are not properly caring for them. Babiuk says vaccination cannot be enforced under this law except in cases of imminent danger, such as an Ebola outbreak.

The third avenue is civil liability. Babiuk says third-person liability such as parents suing other parents for not vaccinating their children and causing the spread of infection will never happen, since it is impossible to prove that one’s child was infected by another specific child. Moreover, such a precedent would open the floodgates to liability cases, says Babiuk, and the courts keep such gates closed. What is plausible, he says, is that we’ll see cases of children contracting preventable illnesses and suing their parents for failing to vaccinate them.
Babiuk says mandatory vaccination—meaning children could be vaccinated without parents’ consent—would only occur in the face of indisputable present and imminent danger.

How many parents must be charged for causing the deaths of their children, though, before anti-vaccination sentiment is swayed? How many people injured not by vaccines but by preventable illness will have to sue their own parents? What kind of information and education will be enough to show parents that they can best protect their children and their neighbours’ children by vaccinating? Where exactly does the misunderstanding lie?

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Fraser says parents deserve full transparency. Full transparency is impossible, however, to the extent that the mechanisms of the world are not fully known to us. The causes of autism and anaphylactic allergies remain unknown, just as cases of those conditions seem to increase every year, terrifying parents-to-be and devastating parents of afflicted children.

Meanwhile, as Bennie says, many autistic children appear perfectly fine until they begin walking and talking. Parents, she says, are left with an overwhelming feeling that their real child is trapped inside a spontaneously malfunctioning brain. Even experts offer few explanations; scientists don’t know the cause of autism. So parents become desperate for explanations. Bennie compares the scapegoating of vaccination to religious conviction: “I would almost call it magic—like this one thing they can put their finger on.”

Meanwhile, autism frequently becomes apparent during the same months and years that children receive vaccines, just like Fraser’s son’s allergies. Such temporal proximity allows correlation and causation to blur. Perhaps believing in an establishment that hides the truth from us can be more palatable than believing no one knows the truth. When Fraser initially spoke to her son’s doctor about her vaccine-related fears, the pediatrician had no answers, she recalls. She didn’t let it go: Don’t vaccines trigger the immune system? Aren’t allergies an autoimmune disorder? She felt “shunned” for asking.

Fraser says, “As soon as you say, okay, I’ve been injured—my child’s been injured—and we’ve been left with this condition, the response you get from medical authorities is disbelief. They call you hysterical, they deny that your child has had the response, deny there’s a connection between allergy and vaccination. And if you persist, there is nowhere else for you to go…. There is no recourse for you. There is no law that will protect you.”

It’s not so hard to see how, the more desperate and unheard she felt, the more convinced Fraser became that vaccines were to blame for her son’s problems—the more convinced she became that the truth was being hidden from her.

Much of human history has played out in a world of threatening and inexplicable monsters, invisible malevolent forces, unpredictable calamities. Without the methods and technologies of science, we sensed gods and demons in every shadow, liable to inflict suffering on us at whim. We placated with prayers, incantations and rituals. The scientific method has allowed us to see, gradually and methodically, into those shadows. We fall prey, at times, to convincing illusions, but overall we’ve come to understand vastly more than our mere senses, intuitions and imaginations allow. We understand that the universe, including our own bodies and minds, is vastly different from how it appears. Even time and space function differently from how they seem to. So does causality.

However, scientific investigation comes up against roadblocks, and we find ourselves, once again, faced with impenetrable darkness, out of which come terrible forces. Forces that threaten and harm our bodies and, worse, the bodies of our children. Forces like autism. Like anaphylactic allergies.

In some provinces, school-age children must be immunized. But such a law runs counter to Alberta’s prioritization of choice.

Bennie believes that, as autism’s true root causes become better understood, “the vaccine thing will go further and further into the background.” The same, she believes, goes for allergies and for all the other bizarre, uncomfortable and catastrophic medical phenomena for which vaccines are increasingly scapegoated.

Until then, Alberta is left with three options: Accept the status quo and allow vaccination rates to drop; attempt through educating parents to raise those rates enough to maintain herd immunity; or institute mandatory immunization to some degree.

Horne, Caulfield and Babiuk are in agreement with the medical community when they say the rates cannot continue to drop without substantial consequences, both medical and legal. And, as we have seen, education does not and cannot persuade everyone. For the critical number whose behaviour endangers the community, education from the government and doctors is worse than ineffective; it’s counterproductive.

Even if childhood vaccination can be mandated, Dr. Nieman says, it nevertheless shouldn’t be. Yes, failure to vaccinate endangers the well-being of the community, he says, but he asks: Once we start banning such behaviour, where do we draw the line? Smoking? Lack of exercise? Eating badly? All of those behaviours endanger society, he argues, with their long-term costs to the healthcare system.

But misguided, if well intended, proliferation of opinion disguised as fact poses a real danger. Despite the pathos of parents such as Fraser—it’s easy to empathize, to understand their grief, frustration and thought processes—facts are still facts. As for Nieman’s slippery-slope argument, smoking indoors is no longer legal. Neither is distracted driving. When it comes to autonomy, Canadian law tends to draw the line at actions that threaten bodily harm to others, including to one’s own children.

Schuklenk dismisses the argument that coercion would only strengthen anti-vaccinators’ resolve. We can’t resist scientifically sound policy based on speculation about how the public will react, he says. But even assuming some people do dig in their heels, mandatory vaccination, he says, would see a large number of people vaccinating their children who wouldn’t otherwise, almost certainly enough to achieve herd immunity. If some refused, depending on the policy in place, children would be apprehended and vaccinated, or parents would simply receive a fine.

For polio survivor Maxine Madison, not surprisingly, the issue is pretty cut and dried. “It is absolutely stupid not to vaccinate children,” she says. Schuklenk agrees, calling fear of vaccination “mind-boggling” and the decision to leave children unvaccinated “utterly irresponsible behaviour” on the part of parents.

“It’s very clear that concerns about vaccines… are completely baseless,” he stresses. Vaccines ought to be mandatory for children and administered at school, he says. Parents should be informed, and the small number who opt out should be dealt with according to whatever policy the government sees fit. Says Schuklenk, “I do not see why a properly organized provincial state should not be able to do that.”

Naomi K. Lewis was an associate editor of Alberta Views.

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