The Vaccine Truthers: why parents shun life-saving shots

Jennifer is a 30-year-old store manager in Georgetown who agreed to talk to me if I withheld her last name. She dresses plainly, rarely wears makeup and follows what she calls a green lifestyle, eschewing drugs and chemicals in any form, taking homeopathic remedies when she’s sick and observing a strict vegetarian diet. She met her husband, Frank, an independent contractor, in 2008. In 2011, she gave birth to their daughter, Franca, at home in a bathtub.

Jennifer was adamant that Franca not be vaccinated. As a teen, she had a bad reaction to a flu shot that kept her in bed for a month. In her 20s, she read horror stories about parents whose children had adverse reactions to routine vaccines that contained things like mercury and formaldehyde.

Five months after Franca was born, her parents divorced. Frank only agreed to give Jennifer custody if she had their daughter vaccinated. So, in late 2012, Jennifer reluctantly took Franca, then 10 months old, for her first round. Jennifer says Franca developed cold and flu symptoms within hours, picking at her ears incessantly. Then, after Franca’s second and third sets of immunizations at 18 months, Jennifer thought she noticed her daughter’s speech and mobility development regressing.

She blamed the vaccines, though her doctor vehemently disagreed with her. She asked a homeopath to perform a metal test on Franca. When it came back showing high mercury content in Franca’s blood and urine, Jennifer confronted her GP, who told her it was only one spike and that it could have been caused by something Franca had eaten. Jennifer, unconvinced, has sworn she won’t allow her daughter to be injected with any more chemicals and persuaded Frank it’s in the child’s best interest. But her extended family is furious with her, saying she’s risking Franca’s safety and their own. Though Franca’s next set of vaccinations isn’t due until she turns four, Jennifer’s sister and mother have told her that the moment Franca misses a vaccination is the moment she can’t be around her cousins. Her daycare centre has also warned her that Franca won’t be welcome.

None of this has shaken Jennifer’s resolve—she’s convinced she’s right to avoid vaccines, and she’s not alone. A recent Ontario Ministry of Health survey concluded that roughly half of young moms have serious concerns about vaccines. Meanwhile, pro-vaccination parents understandably don’t want their kids exposed. “Vaccination is the segregation issue of our time,” Jennifer told me. “It’s not about blacks and whites anymore. It’s about the people who vaccinate and the people who don’t.”

When it comes to world-altering advances, vaccines are right up there with clean water and antibiotics. Children and adults in Ontario now receive vaccines against pneumococcus disease, the flu, diphtheria, tetanus, pertussis, polio, rotavirus, measles, mumps, rubella, varicella, hepatitis B, meningitis and HPV. Nearly anything that once caused devastating childhood disease and death is now preventable.

And yet many of the gains of the last century are in jeopardy. In March 2013, Toronto Public Health investigated an outbreak of measles. Two siblings aged 18 months and three years contracted the virus and passed it on to three other unvaccinated kids in their daycare (two of the five required hospitalization). The siblings’ parents hadn’t vaccinated them because they feared that the MMR shot could cause autism, a myth that has been unequivocally debunked. Then, last February, a one-year-old who’d travelled to the Philippines in the midst of a widespread measles outbreak returned with the virus. There have been 21 measles cases in Ontario so far this year, an alarming number for a once nearly eradicated illness. Measles generally lasts two to three weeks, causing high fever and a severe full-body rash, but it can lead to pneumonia and encephalitis, miscarriage and childhood death. It’s also extremely contagious: before the measles vaccine, a single case could cause an outbreak that would sweep an entire school.

For a vaccine to be considered successful, 95 per cent of the population must comply. Less than half the schools in the GTA meet the ideal immunity rate. According to Toronto Public Health figures, at Alpha Alternative Junior, a downtown elementary school where students aren’t graded, less than 45 per cent of children were vaccinated in 2011–2012.

In a way, vaccination is a victim of its own success. New parents only know polio from history books, and they’ve heard vaccines can cause autoimmune disorders, seizures, developmental delays, paralysis and of course, the biggie, autism. Even if the number of instances is infinitesimal or the evidence is discredited, these parents won’t take a risk on their kids. To them, the side effects sound scarier than the vaccine-preventable illnesses. In our go-natural, eat-clean, consume-organic world, it’s getting harder to convince parents to inject perfectly healthy babies with a cocktail of medical ingredients they can’t pronounce. The same anti-establishment impulse that causes people to question the safety of GMO foods fuels their fear of immunization.

An Aurora nutritionist named Sue Skillins told me she’s long believed better sanitation practices, clean water and natural immunities are enough to keep her children—now 21 and 25—safe from diseases. Another Toronto mother and holistic therapist, Heather Fraser, chose not to vaccinate her second child after her eldest had an adverse reaction. (She’s since written a book in which she argues there’s a link between vaccines and peanut allergies.) I spoke to one mom who told me she hopes her 12-year-old daughter, who has never been vaccinated, will get measles—both to prove to the pro-vaccination camp that it isn’t so bad, and also so that she’ll have lifelong natural immunity.

Parents who refuse to vaccinate their kids complain of being turned away from schools, left off birthday party lists and sneered at by neighbours. One mother of an unvaccinated child who attends an alternative school is so afraid of being ostracized, she would only let me interview her through a third-party email address.

Another mother, a 40-year-old women’s health advocate and front-line community worker with the City of Toronto named Michelle, has two unvaccinated daughters, ages 11 and seven. Four years ago, both of them caught pertussis, a vaccine-­preventable disease more commonly known as whooping cough. If anything, it only strengthened her decision not to vaccinate: while it was tough to see her kids so sick, both rebounded, and she believes the episode will give them a stronger immunity than the manufactured immunity vaccines provide. Michelle says she doesn’t engage with anyone who’d criticize her for her choices. She has surrounded herself with a cocoon of parents who also avoid vaccines. Her youngest daughter is home-schooled, and her eldest attends a Toronto alternative school, where the choice is accepted.

Ananda More, a 38-year-old homeopath, reiki practitioner and doula who runs a clinic in Riverdale, has an unvaccinated six-year-old daughter. Although her husband and extended family back her decision, she’s encountered her share of criticism. “It was extremely difficult to find a GP who supported my decision,” she says. More is making a documentary about the effectiveness of alternative therapies like nosodes—mixtures usually made from infected saliva, pus or feces, then diluted with alcohol or water until they are harmless.

Pointing to anecdotal evidence and studies published in small journals, the homeopathic movement claims nosodes can be just as effective as traditional vaccines, and safer because they contain no additives. But there is nothing in the way of credible scientific studies to confirm their safety or efficacy. Health Canada has approved about 150 nosode products for sale, although it requires all of them to carry labels stating they are not intended as an alternative to traditional vaccines.

It’s tempting to write off the anti-vaccine crusaders as a granola-crunching lunatic fringe, but opposition isn’t a new phenomenon. Vaccines have confronted naysayers since they were first introduced to fight smallpox in 1798. In 1885, in response to a smallpox epidemic, the Ontario government enforced immunization at three months after birth, then again every seven years. More importantly, it empowered school boards to demand each pupil present a vaccination certificate to stay enrolled. The Toronto school board implemented this requirement in 1894, and immediately faced a city-wide protest. In 1900, politicians, labourers, homeopaths, businessmen and even a few doctors banded together to form the Anti-Vaccination League of Canada. Its mission: to repeal all ­compulsory vaccination laws. To them, vaccinations seemed alien and unsafe—they balked at being forced to receive them, believing it encroached on their individual rights.

Six years later, after extensive media coverage, the league presented a petition to the school board demanding the law be rescinded. It contended smallpox vaccines were “a ploy to avoid more expensive sanitary measures,” like clean water and better disposal of human waste, and questioned the logic of ­forcing inoculation on a healthy population. Members complained that the vaccine’s alleged side effects—cancer, blindness, ulcers, abscesses—were worse than smallpox itself. Back then, unsanitary vaccine practices, including the use of unclean needles and improper care of injection wounds, did cause some of those things. Many of the working poor preferred to take their chances with smallpox.

Public sentiment against vaccines won out until 1919, when Toronto’s medical officer of health, Charles Hastings, reinstated the compulsory vaccinations for schoolchildren. He called people against vaccines in Toronto “ignoramuses.” The secretary of the provincial board of health added that the anti-vaccine camp “is not worth any intelligent man’s considering for a moment.” The debate raged throughout the 1920s, but as more vaccinations were enforced, smallpox rates dwindled (it was declared eradicated in 1980), and the anti-vaccination movement faded.

For a little while, at least. In the 1980s, controversy around vaccines flared again, centred on the vaccines against whooping cough, diphtheria, tetanus and polio, following a high-profile U.S. documentary that claimed vaccines caused brain damage in children. In 1982, in an effort to raise the immunization rate, the Ontario government passed An Act to Protect the Health of Pupils in Schools (later renamed the Immunization of School Pupils Act) authorizing the suspension of any students who couldn’t prove they were fully immunized. Soon after, a small group of Ontario parents formed the Committee Against Compulsory Vaccination. It lobbied the government for two years, eventually convincing politicians that the forced intake of medications violated the recently entrenched Charter of Rights and Freedoms. The committee secured an amendment to the act, guaranteeing exemption based on religious and conscientious choice not to vaccinate. In other words, parents who sincerely believed vaccines would harm their children didn’t have to immunize, and their children could not be suspended from school.

The province, concerned about the recent spike in rare ­illnesses like measles and undeterred by the anti-vaccine ­lobbyists, has expanded the act to cover even more vaccines. Starting this month, students must now also show proof of vaccination for meningococcal disease and whooping cough, in ­addition to tetanus, diphtheria, polio and mumps. Kids born in 2010 or later must also show proof of chickenpox vaccine or face suspension. Parents will have a year-long grace period to get their children’s records in order.

Parents whose kids have bad experiences with vaccines—a small minority—often become lifelong activists, determined to convert other parents to their anti-vaccine philosophy. Edda West, a co-founder of the Committee Against Compulsory Vaccination, first became suspicious about vaccines in 1977, when her youngest child contracted measles after receiving the MMR shot. She went on to help found the national Vaccine Risk Awareness Network for parents who consider their child vaccine damaged—a conclusion often based on their own research but also sometimes on a homeopath’s diagnosis. Now a stick-thin, silver-haired 70-year-old, she spends her days as a “risk educator” for VRAN. She gathers evidence disproving the safety and efficacy of vaccines. Her organization counts a couple of hundred members, from young parents to grandparents.

Yvonne Armstrong became an anti-vaccine activist after her daughter, Kaitlyn, received the Gardasil vaccine at school in 2010. Yvonne and her husband, Mark, live with their four children in a large white house with a double-car garage on a quiet street in Brooklin, a small town north of Whitby. They’re unlikely activists: Yvonne is a former Toronto cop who currently teaches part-time for Durham College’s police foundations program and competes in bodybuilding contests. Mark is a SWAT sergeant with the Toronto police.

Kaitlyn experienced extreme pains immediately after her first of three ­Gardasil shots for HPV, the number-one cause of cervical cancer. Public and Catholic schools across the province administer the vaccine to girls over the span of the Grade 8 school year. Yvonne assumed her daughter’s pain was related to her intense schedule of soccer, dance, and track and field. A tough-love kind of mom, she told Kaitlyn to take an Advil and suck it up. After Kaitlyn received the third shot in April, her joints became stiffer and stiffer, like she was filled with slow-drying cement. Eventually, the pain became so encompassing she could barely walk. Yvonne would lay her down on the living room floor and pack her in ice, head to toe.

Test after test—for cancer, juvenile arthritis, celiac disease, Lyme disease, lupus, everything—came back negative, until Kaitlyn went for a round of testing at SickKids in February 2012 and was diagnosed with fibromyalgia, an incurable condition that could mean a lifetime of musculoskeletal pain and fatigue. At the suggestion of a friend, Yvonne made an appointment for Kaitlyn with a naturopath-chiropractor, who asked if she’d had any recent vaccines. He then started listing off the ingredients in Gardasil, including aluminum, and Yvonne felt her stomach drop. Kaitlyn is severely allergic to metal—ever since she was a baby, if any type other than gold or silver touched her skin, she’d react with swelling and rashes. What, Yvonne wondered, would happen if something containing aluminum were injected into Kaitlyn? Could it be responsible for her spiral into illness and pain?

The answers were mixed. Aluminum is used in Gardasil as an adjuvant, as it is in many vaccines, to enhance and strengthen a person’s immune response. Immunize Canada, a ­coalition composed primarily of medical associations that promotes the use of vaccines, stresses aluminum is present in baby formula and even a mother’s breast milk in about the same amount as is found in vaccines. And yet Merck, the maker of Gardasil, warns that people who have had severe allergic reactions to amorphous aluminum hydroxyphosphate sulfate, yeast or polysorbate 80—all used in the vaccine—shouldn’t get the shot.

Yvonne took Kaitlyn to see Paul Jaconello, an MD in Toronto who practises holistic medicine. Like the chiro­practor, he believed Kaitlyn’s pain was a violent autoimmune reaction to Gardasil. For Kaitlyn to get better, he concluded, she’d have to get the metal out of her system using chelation treatment, a strength-sapping therapy most often used in cases of metal poisoning, like uranium, lead or arsenic. Chelation is controversial and not covered by OHIP: while it flushes metal out of the body, it also dumps vital nutrients. Done improperly, it can do more harm than good. The Armstrongs thought it was worth the risk. After the fifth treatment, Kaitlyn walked up the stairs at her house, alternating feet, for the first time in months.

Yvonne decided other parents needed to hear what happened to her daughter. Throughout the 2013 school year, she visited school boards across the GTA, sharing a PowerPoint presentation that described Kaitlyn’s ordeal—the mystery illness, the Eureka moment and the return to health. After each presentation, she implored the school board to include Gardasil’s product warnings in permission forms and to encourage parents to consult a doctor. Her principal goal is to convince officials to move the vaccine out of schools—where it has become just one more permission form, an automatic yes, like for pizza day or the zoo—and into the doctor’s office, where, ideally, a parent has the opportunity to ask for more information. While she believes parents and kids should have access to the vaccine if they want it, she also thinks they’re now woefully under-informed.

Yvonne’s presentations have not always gone well. Her request can seem both small and sensible, but the health care field is extremely hesitant to draw more attention to the potential risks of vaccines. The fear is that people will do exactly what Yvonne wants them to: use her daughter’s bad reaction as a universal lesson for all parents. What Yvonne views as preventative education, doctors see as scaremongering. Some health care professionals refuse to believe the vaccine could be harmful. At one presentation, a team of medical researchers from McMaster University told the school board Gardasil likely didn’t cause what happened to Kaitlyn. One doctor who attended Yvonne’s presentation found her on Facebook and accused her of irresponsibly campaigning to rid schools of all vaccines.

Yvonne’s PowerPoint pushes a lot of emotional buttons. Sometimes, a school trustee will cry. They see a girl who underwent drastic change, who lost two years of her life to a debilitating condition, and it breaks their hearts. Kaitlyn’s story is affecting in a way cold logic isn’t, her experiences infinitely shareable and memorable—a major part of the anti-vaccine movement’s traction.

Last February, in an attempt to persuade parents of the safety of vaccines, Public Health Ontario released a comprehensive report on adverse events following immunization, what they term AEFIs. “Improved communication,” it says, “will contribute to restoring confidence and building trust in the vaccine system.” The report reveals that of 7.8 million doses of vaccine administered in the province in 2012, 765 people claimed to have experienced an AEFI. Of those AEFIs reported, doctors determined 134 were clearly linked to another medical cause and therefore unsubstantiated, leaving 631 cases of confirmed bad reactions. Few—56 of the 631—were deemed serious. Nineteen of the cases deemed serious involved children who required hospital stays. There were no reports of death. Much more commonly, people experienced injection site reactions (pain, swelling, abscess), rashes or fevers—reactions that are unpleasant but don’t last.

There have been calls to implement a no-fault compensation system in Ontario for people who’ve suffered adverse ­reactions—something that exists in many other places around the world. Such a system was introduced in the U.S. when many drug companies stopped making vaccines following a flurry of high-price payouts. Under it, vaccine manufacturers can’t be held financially responsible. In other words, it’s a way to maintain the integrity of the vaccine system while also helping those who’ve suffered serious reactions after vaccination.

This summer, Jennifer, the woman who ­vaccinated her daughter to get custody, took Franca, now three years old, to be assessed at ErinoakKids, the largest treatment centre for children with disabilities in Ontario. Though the doctors couldn’t trace the cause of Franca’s disability, they did diagnose her with developmental delay, including a severe speech and language delay. When she is 10, Franca could be functioning at the level of a six-year-old, or younger. To supplement the ErinoakKids’ therapy, Jennifer started Franca on a detox of organic foods and Epsom salt baths.

Franca’s diagnosis has only reaffirmed Jennifer’s fear of vaccines. She doesn’t care if her family shuns her, if she’s kicked out of daycare, if the rest of the world calls her crazy. Her main concern, she tells me, is to do no more harm to her daughter.

She still plans to protect Franca from disease: she advocates that chemically based vaccines be replaced with homeopathic versions. The last thing Jennifer would want, she says, is for society to slide back to what things were like when little protection existed and hundreds of thousands died.