The Flu Shot Crusader

Jill Promoli is a photographer who specializes in wedding and lifestyle shoots—carefully lit, expertly framed images of happy, handsome families. And in the spring of 2016, her own family was the best possible advertisement for her work. She was 34 at the time, and lived with her husband, Craig McGee, a portfolio manager at a wealth management firm, in a good-sized house in Mississauga. They had three beautiful, healthy children, each of whom had inherited their mother’s fiery-red hair: kindergarten-age daughter Isla and two-year-old twin boys Thomas and Jude. They were comfortable, settled, content.

Early that May, Promoli got a call from the school informing her that Isla had suddenly developed a fever. A bug had apparently swept through the kindergarten class over the previous couple of weeks and had affected most of the students, one seriously enough to be hospitalized. Isla recovered within 24 hours, but later that week, Jude woke up with a low-grade fever. He had no other symptoms and still seemed like his usual gleeful self. Promoli wasn’t worried. They had a quiet morning at home and after lunch she put the twins down for a nap. Jude was singing before he fell asleep.

When Promoli was ready to pick Isla up from the school bus, she went into the boys’ room to wake them. Thomas jumped up, wide awake and giggling. But Jude didn’t move. That was strange—when one boy was up, making noise, usually, so was the other. Promoli approached Jude’s crib. He seemed to be asleep, so she tried to wake him. But he wasn’t asleep, and he wasn’t breathing. She called 911 and began performing CPR. But she knew she needed help right away, so she ran down to the driveway, frantically calling out to her neighbours. Half a dozen came to her aid, and they too gave Jude CPR as the small street quickly filled with police cars, fire trucks and ambulances. She asked a neighbour to tell the school bus driver, who she could see heading up the block, to take Isla back to school.

Paramedics brought Jude outside so they could work on him there. Promoli thought, sickeningly, that they didn’t seem to be in a hurry to get him to the hospital. An hour after she had gone to wake him, after all possible emergency intervention, he was pronounced dead.

What had killed him? The doctors didn’t seem to know. That weekend, they did the first stage of an autopsy and still, no answers. “The only thing wrong with him is that he’s not alive anymore,” the coroner told Promoli and McGee. The loss of a child is the most painful thing a parent can experience, and that pain had taken on an absurd and crippling dimension of ambiguity. There was a second stage to the autopsy, the pathology, but those results wouldn’t be available for months and they still might not find anything.

Promoli was in shock for the first week. She felt like she couldn’t move her arms. There were many days when she didn’t know how she would get from morning to night. She and McGee spent that whole summer terrified. They didn’t know why Jude had died; all they knew was that they hadn’t been able to protect him. How would they protect their other kids? People kept asking what had happened. You must have seen something. You must have missed something. Other parents wanted to make sure they didn’t do whatever Promoli must have done. They were scared too.

Then, on August 24, the coroner called. Promoli could barely bring herself to pick up the phone. “I don’t know how to tell you this,” the coroner said, “but Jude died from influenza B.” Promoli was still confused. The flu? It didn’t make any sense. They’d all gotten their flu shots; they always did. Jude had no respiratory distress, no cough—wasn’t that part of the flu? If he’d had the flu, wouldn’t he at least have looked like he had the flu? But no. He had been fine. And then he was gone.

The flu kills 3,500 Canadians every year, almost twice the number of people who die in car accidents. Globally, around half a million people die from it in an average year. And it’s a shockingly complicated, furtive thing. We know the influenza virus’s genetic code and how it makes us sick. But according to Jeremy Brown, a former ER doctor and director of emergency care research at the National Institutes of Health in Maryland, the flu virus poses two overwhelming challenges. One, it doesn’t always kill. For almost all healthy people, in fact, the illness is just an unpleasant annoyance. Unless you’re very old or very young or you have a chronic medical condition, you tend to underestimate its power and are likely not to worry about it. Two, we don’t really have an effective way to fight it. While the flu vaccine undeniably works, it’s not consistent—on average, it works about 50 to 70 per cent of the time. Flu viruses mutate rapidly, and different strains crop up every year. In order to prepare a vaccine ahead of flu season, researchers make an educated guess about which strain will be most common, and sometimes they guess wrong. In 2018, the vaccine was only effective in about a fifth of those who received it. But it’s still the best option we have, especially when coupled with vigilant hygiene (frequent handwashing, sneezing into the crook of your elbow, staying home when you’re sick). And for people who are routinely around the very young, the elderly or those with compromised immune systems, it’s the only option that helps protect others.

People can develop immunity to an infectious disease by either becoming sick with that disease or by being vaccinated against it. Vaccines, which create immunity without making a person sick, are the easiest, most effective way to ensure a disease-resistant population. Herd immunity doesn’t require a hundred per cent of the population to be immune; with a highly contagious disease like measles, having 95 per cent of people vaccinated breaks the infectious chain of the disease and prevents its spread to vulnerable people who may not be able to get vaccinated, like infants. In other words, when you get your shot, you’re protecting a lot more people than just yourself.

After Jude’s death, Promoli and McGee set out to understand as much about the flu as they could. They had to explain to their family and friends why Jude died, and they didn’t want to give anyone wrong information. They spoke to doctors and infectious disease experts, and read widely. They discovered that the flu can cause organ or system failure, that it can stop your lungs or your brain or your heart. And that’s exactly what had happened to Jude—his flu had caused cardiac arrest. But once they knew what had killed him, they were frustrated. The flu was preventable, and they had done what they were supposed to do to protect him. It wasn’t enough. He hadn’t developed immunity. What if the people around him, people in the community, had done more? What if everyone who had come in contact with Jude, including all the kids in Isla’s class, had been vaccinated? Would he still be alive?

Promoli decided that the conversation around vaccination wasn’t loud enough. During the 2015–2016 flu season, the vaccine coverage rate among all Canadian adults was just over 34 per cent. Maybe through the example of their loss, Promoli and McGee could amplify the conversation and boost that rate. Promoli was “just a mom from Mississauga,” as she puts it, but one mom’s story, told frequently and loudly enough, could both goad and inspire. They started an awareness campaign called For Jude, For Everyone. They made posters. They opened social media accounts, created a hashtag and figured out how to build a website. They had an official launch—October 18, 2016—and put out their message wherever they could.

Recognizing the limitations of their platform, Promoli enlisted politicians to help spread the word. “It was about telling them, ‘Please get your flu shot because you’re public-facing, you spend all day shaking hands, and you want to make sure you’re staying safe but you also want to make sure you’re not making your constituents sick.’ ” Her ambition grew quickly, and one day, outside the Toronto Star building, she ambushed Justin Trudeau, who’d made his pro-vaccination stance known in the House even before he became prime minister. She later got him to agree to get his flu shot publicly. He’s been doing so, and making videos for Promoli’s campaign, ever since. Other high-profile figures—former health minister Jane Philpott, Chelsea Clinton—likewise lent their support. The campaign was a full-time job, and hardly an easy one. They were making it up as they went along. The whole family, of course, still desperately missed Jude. “We crumble every day,” McGee says.

Almost as soon as they launched their website, they were confronted by the anti-vaxxers. Promoli was shocked by the vehemence and outright cruelty of their attacks—and by their numbers. Within days, she received hundreds, then thousands of Facebook comments and messages. “Kids aren’t your science experiments you vaccine pedophile,” read one typical example. “Jude died of VIDS you fucking cunt.” (VIDS stands for “vaccine-induced death syndrome.”) Others asked her how much money she was getting and claimed that Big Pharma paid off mothers who had lost children to vaccines to keep them quiet. Another wrote, “I will not light my child on fire to keep yours warm, sorry”—a particularly vicious comment given that Promoli and McGee had just cremated Jude.

Anti-vaxxers are as old as vaccines themselves, which have been around since 1798, when they were first used to successfully treat smallpox. Over the next century, many people argued that vaccines were unsafe, that they were being used unfairly on the poor (who would have benefited more from clean water and sanitary living conditions), and that their compulsory implementation in schoolchildren violated individual rights. While smallpox’s eradication took the wind out of those particular sails, new vaccines and additional mandatory inoculation schedules generated fresh controversies—the notion that vaccines were linked to neurological damage, and, most notoriously, autism. Vaccine opponents likewise tried different tactics. In Ontario, in 1984, a group of parents calling themselves the Committee Against Compulsory Vaccination convinced politicians that vaccines violated the Charter of Rights and Freedoms. While the Ontario government had passed a law authorizing schools to suspend students who couldn’t prove they were fully immunized, these parents were able to secure exemptions for religious, medical and conscientious reasons.

The emergence of the Internet and social media gave anti-vaxxers new tools. Like other activists, whistleblowers and dissidents around the world, anti-vaxxers can use these platforms to fight what they see as abuses of power. They can post studies and articles that support their beliefs on Facebook and Twitter and Pinterest, and they can share that information with their friends and family without the permission or imprimatur of traditional gatekeepers. They can tell stories about their own mysterious illnesses, or their children’s. They can talk about how pharmaceutical companies have failed them or how the government screwed them over. It’s never been easier to find “facts” to back up any belief system.

Social media algorithms, prizing engagement above all, reward incendiary opinions and heightened emotions. Information that stokes fear, regardless of its truthfulness or accuracy, can become the information that people most often end up seeing. And sharing, ad infinitum. This is the story of the 2016 American election and December’s U.K. election. It’s the story of the recent rise of anti-Semitism and the more recent Facebook panic over rumours of men in white vans travelling across the U.S., kidnapping women for sex trafficking. “Fear can spread faster than a virus during periods of uncertainty,” says Theresa Tam, Canada’s chief public health officer.

So can a mob mentality. Online identity is mutable—good news for teenage YouTubers, less so when you’re looking for reliable medical, or even reliably human, help. You can also, of course, join groups: like-minded people can be found easily and community created quickly, but those communities can just as easily become self-reinforcing echo chambers. In recent years, Facebook’s algorithms have allowed American groups like Stop Mandatory Vaccinations and the World Mercury Project, chaired by Robert F. Kennedy Jr., to aim anti-vaccine ads at parents of young children.

In Toronto, the anti-vaxx movement has grown more vocal and visible in recent years. The B.C.-based Vaccine Choice Canada, a not-for-profit that grew out of the Committee Against Compulsory Vaccination, was founded in 2014, and has chapters in London and Toronto and more than 13,000 followers on Facebook. (For Jude, For Everyone has about 4,500). A year ago, Vaccine Choice Canada placed four different advertisements on 50 digital billboards around the GTA, posing questions about the number of vaccines that should be necessary and why Canada doesn’t have a vaccine-injury compensation program. (A week later, the billboards were removed at the request of the city.) Last October, the group launched a suit against Ontario’s mandatory child vaccination law, again arguing that it breaches Charter rights. Amid all this activity, Toronto Public Health issued a report in early November stating that a dozen local alternative schools have enough unvaccinated students—all of whom have a religious or conscientious exemption—to put their schools at risk of measles outbreaks. Cases of measles, a disease completely eradicated in Canada a couple of decades ago, have jumped 300 per cent in the past year. By November, more than 1,200 cases were confirmed in 31 American states.

When Promoli started her crusade, she knew she wouldn’t be able to convince the hardline anti-vaxxers. She focused her efforts instead on the vaccine-hesitant—people who have questions, who are behind on vaccination, who are simply lazy. But it’s the hardliners who bedevil her. She’s spent whole days deleting negative or misinformed comments on her sites and pages. Certain keywords (“ingredients,” “toxin,” “meat puppet” and “retard” among them) will cause a post to be automatically flagged. “There’s so much garbage,” Promoli says, “and people will just post, post, post constantly. If it keeps showing up in your feed, it’s hard to ignore it.” Another tactic anti-vaxxers use is to mass-report Facebook pages as being abusive or spam, in the hopes that Facebook will block them. This has happened twice to Promoli. In November 2017, her photography page was reported for “malicious content,” and it was only through a friend who works for Facebook that Promoli was able to get it reinstated. The second time it happened, they went after her flu page. It was frustrating and dispiriting, but Promoli ultimately shrugged it off. “We’ve already lost our child because not enough people get their flu shot,” Promoli says. “There’s nothing more they can do to hurt us.”

I met Promoli at her home in late November. It was a couple of days after Isla’s ninth birthday, an occasion that traditionally marks the beginning of the family’s Christmas season—a large tree, already trimmed and lit, stood in the living room, and an advent calendar hung on the back of the front door. The first floor of the house was cheerful and crowded with Promoli’s art: a large canvas that spelled out the lyrics to “Chasing Cars” by the Northern Irish band Snow Patrol loomed over the living room couch, and other walls were covered in roughly a hundred framed black-and-white photographs that Promoli had taken, including a couple of shots of Trudeau meeting Isla and Thomas. A closed upright piano served as a makeshift display stand for yet more photos, including a close-up of Jude’s face, and other mementoes. The family dog, an elderly charcoal-coloured cockapoo named Guinness, reclined on the couch, occasionally voicing his displeasure at passing traffic.

Promoli is slight and dimpled, with dense Titian curls and a ready, toothy smile. For someone who’s known such heartache, she’s unusually buoyant—a mood-elevating SAD lamp in human form. Growing up, she aspired to become a lawyer and, to that end, studied political science at Wilfrid Laurier. The advocacy work she does now suggests that she would have been an effective litigator—she’s persuasive, tenacious and agreeable all at the same time.

She has taken her campaign to school boards, hospitals and health departments, and late last September, she appeared before the Toronto Board of Health, which was then voting on a strategy to address vaccine hesitancy. The meeting was packed with people making deputations that directly opposed hers. Most, if not all, were members of Vaccine Choice Canada, and one after another, they spoke about the loss of or injury to their children, about their constitutional rights, about the inefficacy or danger of various vaccines. More members filled the gallery and overflow area, occasionally cheering, only to be silenced by board chair Joe Cressy. At the end of the proceedings, as Promoli was leaving, some members of the group followed her out, yelling that it was her fault, that she had killed Jude and that she was trying to kill more kids. “It was like being confronted with the contents of my inbox,” Promoli says. A later account of that meeting, posted on Vaccine Choice Canada’s website, accused Promoli of anger and “blind retribution.”

Christine Colebeck, who’s on the board of Vaccine Choice Canada, was the first deputant that day. Her story, in some ways, was an eerie analogue to Promoli’s. Her first child, Laura, was vaccinated at three months and promptly developed fever, swelling and a high-pitched encephalitis cry. She died 24 hours later, and the cause of death was never adequately determined. Colebeck went on to have five more children. The fourth, Carter, was vaccinated at three and a half and likewise screamed and swelled. He developed inexplicable, lifelong neurological impairment and died suddenly and inexplicably at the age of 23. As with Promoli, Colebeck’s confusion and grief led to her becoming a kind of crusader. But where Promoli saw a flawed system that required more vigilance and awareness to work better, Colebeck saw one that was irredeemably corrupt and malignant.

A 52-year-old ex-nurse, Colebeck lives in Woodstock, but I met her recently in Toronto, when she was in town with her husband, Richard, and youngest son, Spencer, to visit the Distillery District Christmas market. Spencer, who’s 15, has never been vaccinated. The Colebecks were polite, articulate, vulnerable and self-aware—when we were saying goodbye, Christine jokingly said, “I guess you’ll have to go home and take a shower now.” They were also wary and defensive. When I took out my digital recorder, Richard pulled out his phone so that he, too, could record our conversation. From the outset, he told me that he found the term “anti-vaxxer” offensive; he prefers to be called “pro-choice” or “vaccine-risk aware.” For the next 90 minutes, the Colebecks gave me a crash course in their worldview, outlining theories both credible (Big Pharma benefits from a mandatory vaccination schedule, Canada is the only G7 country without a national vaccine injury compensation board) and not (there are far more adverse reactions to vaccines than reported, the coroner was not “allowed” to say that Laura’s cause of death had been her pertussis vaccine). “The reason for vaccine hesitancy,” Christine said, “is because they’re lying to us. They’re withholding information that we’re asking for. There’s no transparency.” Promoli had happily told me that Facebook and Twitter had recently started redirecting users to the World Health Organization or Health Canada websites when they searched for vaccine information. All the Colebecks saw in that move was censorship.

When I asked about the hostile comments that Promoli had received, both in person and online, anger flashed across Richard’s face. “Who? What hostility have you seen?” he asked. “There’s crazies on both sides,” he said, and Christine recounted the comparable abuse she’d received or seen: that anti-vaxxers should all lose their children; that they should be taken away from them; don’t worry, they’ll be dead before they grow up anyway. Mostly, the Colebecks said the mainstream media had made things worse, creating polarization and hysteria. They just wanted to ask questions, they said, and to have an honest, grown-up conversation.

What they really wanted, it seemed, was a bit of empathy. They’d lost two kids, for reasons they didn’t understand. They were still afraid, confused and hurt. It’s like they want her to not exist, Christine said of her daughter, Laura. “I can really understand how Jill wants to keep the memory of her child alive,” she said. “Jill and I are on the same side. We want healthier children. We want vaccines that work.”

In On Immunity, an acclaimed book about the complex, deeply personal questions raised by vaccination, author Eula Biss argues that the debate tends to unhelpfully, even tragically, divide us, pitting science against nature, public against private, thought against emotion. “Rather than imagine a war in which we are ultimately fighting against ourselves,” she writes, “perhaps we can accept a world in which we are all irrational rationalists.”

My seven-year-old son is fully vaccinated, and is generally a healthy, athletic kid. He got his flu shot in mid-November. (This year’s flu peaked earlier than normal, and it’s driven by influenza B, the strain that killed Jude.) Previously, my son received the vaccination through a nasal spray, which is given to children up to the age of 18. This year, the spray wasn’t available, but the pharmacist said the shot was more effective anyway, contradicting what a doctor had told me the previous year about the spray being more effective. After getting his injection, my son was indignant—it was more painful than he’d been led to believe. “I wish we didn’t live in Canada,” he said, “so we didn’t have to get the flu shot.” No, I told him. We’re lucky that we live in Canada, where flu shots are free and widely accessible. Then I bought him some candy.

A week and a half later, he developed a fever. He’s had lots of fevers over the course of his life, but it had been a long time since he’d been sick, and the next day, when he was still hot and started coughing, I grew concerned. I lay awake, my mind marinating in the murky, paranoid thoughts my recent research had inspired. Did he have the flu? Maybe the vaccine didn’t work. How many unvaccinated people had he encountered? Did I somehow curse him simply by writing this story? On the third night, when his cough had worsened to a persistent bark, my wife called the after-hours number at our family doctor’s office. They told her it sounded like croup, caused by a relatively harmless parainfluenza virus that occurs in very young children with narrow airways. He’d had croup, very briefly, when he was a baby, but wasn’t he too old for that now? What was that doctor talking about? And what do doctors know really? Eventually, I went to sleep. The next day, when he woke up, his fever was more or less gone. The cough had subsided. Life, thankfully, went on.

Promoli often talks about the “inconvenient facts” around flu prevention. It’s an inconvenient fact that the flu vaccination is not 100 per cent effective. It’s an inconvenient fact that we have to get vaccinated every year and that we don’t know exactly which strain is going to appear every season. It’s an inconvenient fact, she says, that although Jude was vaccinated, he still died.

But it’s also an inconvenient fact that we live together, among other people whose behaviour we can’t control, who make decisions that are the opposite of the ones we make. It’s an inconvenient fact that our bodies and beliefs bump up against other bodies and beliefs, and that those collisions inspire as much fear as they do kinship. It’s an inconvenient fact that our knowledge has limits. It’s an inconvenient, unbearable fact that kids die and we don’t always know why. And it’s an inconvenient fact that we’ll likely never have a perfect, universal flu vaccine—a cure, in other words—and that the flu will always be with us. That all our efforts will never be enough.

If that is the case, how long can Promoli keep up her work? She doesn’t know. There’s no end goal, no metric by which she can measure success. Nothing will ever bring her son back. So maybe she can never stop. “I should be spending this time with my third kid,” she says, “but he’s just not here. That time should be Jude’s. Now it’s his in a different way.”