I have a story about the doctor’s office.
Three months ago, when our infant son was only two weeks old, my wife and I were in search for a dentist who could revise his severe lip and tongue ties, a congenital buildup of tissue between the lip or tongue, respectively, and mouth, which had prevented him from nursing and would have affected his speech if uncorrected. We found one who had glowing recommendations from other providers and who had graduated from a famous dental school. Her office had the same lacquered sheen and peppy staff that you’d expect of any other upmarket doctor’s practice.
The procedure went well. The CO2 laser she used to release my son’s lip and tongue looked like it had been teleported from the future. The procedure took one minute, and afterward our baby was returned to my wife’s arms.
All seemed fine.
In the recovery room, as my wife soothed and fed our child, I saw a set of pamphlets. They weren’t from companies offering supplements or provided by medical providers advertising additional procedures.
They were from Texans for Vaccine Choice, the leading anti-vaccine organization in our state.
I shook with fear, then rage. My wife gathered our son. I gathered our things. As they watched from the sidewalk outside, I walked back into the office and picked up the pamphlet. I asked the staffer at the front desk if the practice supported the group and asked if they ask parents for vaccine records. They gave me a monologue about how vaccines were a matter of “parents’ choice,” and that “no dentist” asks for vaccination records. The office, she told me, was “neutral” on the idea of vaccines.
I demanded to know why a practice that will eagerly perform medical procedures on children too young for vaccines allowed propaganda from an anti-vaccine organization in its office. I asked if they understood herd immunity and if this was all some delusional Libertarian dogwhistle. I asked if they’d had any patients with a fever that day. A week later, after following up with the office asking to speak with the doctor herself, a staffer called me, a hygienist we met at our first visit. The conversation was similarly filled with half-answers, though I was told that the anti-vaccine pamphlets “were not political.” Of course, the office’s “neutral” stance meant that the presumed safety of a medical office was up for grabs. In our experiences, unless you ask them directly, there’s rarely a way to know a medical professional’s stance on vaccines, even those who work with young children.
The science around vaccines is settled. They work. They are remarkably safe. That they have been standardized and scaled for global use is a miracle of modernity. But the rise of the anti-vaccination movement has become a prism through which each kind of American fear refracts into madness. From merely anxious parents who are really into essential oils and delay “non-essential” vaccines, to paranoid anti-elitists who believe in the New World Order and know for a fact that eradicating measles is part of a grand takeover by Swiss pharmaceutical firms, it is a cause that draws in parents from all political and ideological perspectives.
The actress Jenny McCarthy, an OG anti-vaxxer who believes that there is a correlation between vaccinations and autism, now has an autism “charity” called Generation Rescue, the board members of which enrich themselves through spreading anti-vaccine paranoia and hawking snake-oil immunization substitutes. Twitter CEO Jack Dorsey recently showed up on a podcast with Ben Greenfield, author, triathlete and self-proclaimed health expert who repeats the debunked claim that vaccines cause autism. A Texas state representative named Jonathan Strickland has doubled down on the anti-elite science denial and recently took to Twitter to call vaccines “sorcery.”.
The Dallas-Ft. Worth area, where my wife and I live, has joined a very scary map of measles-affected areas throughout the nation. I look at this map regularly. A cruise ship full of Scientologists, at least one of whom had measles, floated quarantined near St. Lucia. New York City and the entire nation of Germany will now fine parents who allow unvaccinated children in public. As the national measles outbreak hits a generational high, vaccine deniers have marshaled an old episode of The Brady Bunch as evidence of the measles vaccine’s pointlessness. Another sinister thread has emerged: thinking around vaccines that I once thought was nuanced and reasonable now seems insufficient, even toothless. I have run out of names for this madness.
In 2015, the Vaccine Confidence Working Group, a collection of doctors and public health professionals formed by the National Vaccine Advisory Committee at HHS, released a report titled “Assessing the State of Vaccine Confidence in the United States: Recommendations from the National Vaccine Advisory Committee.” While VCWC assures readers of the generally high national rates for full and on-time childhood vaccines, it reminds us that “national estimates also can mask geographic variation in coverage rates.” The report provides a chilling example: “in Washington State, the overall exemption rate in 2006 was 6.0 percent, but county-level exemption rates ranged from 1.2 percent to 26.9 percent.”
Quite literally, your friends and neighbors have the power to transform the health environment around your community’s children. Most early childhood diseases require extremely high — north of 90 percent — community vaccination rates, meaning that if only a few families who delay or refuse to vaccinate their children can open a door in their communities for life-altering diseases. These clusters of vaccine-hesitant parents and vaccine deniers — “deniers” and “denial” being words that frequently comes up in the literature around vaccines — can remain invisible. Even families who live in communities with high immunization rates can unwittingly encounter these pockets of parental neglect if they, say, go to a basketball game, where a measles-infected person can infect the air around roughly 20,000 people.
When I asked Dr. Peter Hotez, the dean for the National School of Tropical Medicine at Baylor College of Medicine, about how to properly approach the subject of immunization with vaccine-hesitant parents, he said that the “biggest obstacle is anti-vaccine content on the internet”; he described well-organized vaccine denial groups has having “weaponized Amazon” with anti-vaccine books.
Medical experts like Hotez, who publicly call out anti-vaccine groups and share facts about the success of vaccines, are attacked and threatened online. Jonathan Strickland, the Texas state representative who called vaccines “sorcery,” claimed on Twitter that Hotez had been “bought and paid for by the biggest special interest in politics.”
It’s terrifying to consider how many parents really loiter in the pool of deranged Facebook posts, and embrace insidious anti-vaccine or vaccine-skeptical organizations who dress themselves in benign language, like Robert F Kennedy Jr.’s Children’s Health Defense, or the aforementioned Texans for Vaccine Choice. Unscrupulous doctors desperate to keep their patients advise medically unsound vaccine delays “alternative schedules” — timetables that break with the maximum-effectiveness, minimum-risk chronological windows for certain vaccines researched and reaffirmed by WHO. Wealthy Southern Californians lean on the “purity” of their children and omnipresent shadows of “toxins” as reasons not to vaccinate. Conservative Texans see “big government” in public-school vaccine requirements. If language creates worlds, then maybe failures of language live at the root of the anti-vaccine movement.
Meanwhile, parents unwilling to read a few paragraphs from a reputable source still lean on a single debunked study from 1998 conducted by a disgraced former doctor named Andrew Wakefield, that claimed a link between the measles, mumps, and rubella vaccine and spectrum disorders. The Lancet, the world-leading medical journal in which the study appeared, eventually retracted the piece, the first and only time the journal has issued such a retraction. Wakefield lost his medical license and has been spotted traveling around America convincing vulnerable immigrant populations not to vaccinate. Coincidentally, he now lives in Texas.
I’ve been thinking about Eula Biss’s 2014 book On Immunity, a non-fiction blend of memoir and research which alternates between chapters on the history and contemporary status of vaccines and the story of her son’s birth and the medical events of his first years. Upon its publication, it felt like a clarion call for how to understand the power of vaccines. Biss’s first essay collection, Notes from No Man’s Land, offered some of the most probing, reflective pieces on race and American history that a white American could write. I hoped On Immunity might do something similar for public health and parenthood, and I was not alone. Written with both the scrupulous eye of an archivist and the visceral fears of a new parent, the book received extremely positive reviews and won the National Book Critics Circle Award.
But, rereading it recently, I’ve been struck by how it quietly embodies part of the problem around vaccine rhetoric.
Biss works best in the rhythms of history. She discusses the racial realities of the contemporary anti-vaccine movement (which is white, wealthy and educated) and the ways in which quintessentially flawed political ideas of American freedom and independence have dipped in and out of the history of vaccines. Additionally, she notes the history of women being lied to, dismissed, or outright subjugated by the medical community, offering context that helps place women’s distrust of the medical establishment as a whole in perspective.
I sympathize with the book’s memoir elements. Like Biss’s son, my older son has had frightening respiratory issues in early childhood. Biss’s discussions with her husband about the safety of certain products and generalized early parenthood anxiety could easily be my me and my wife. Its landing spot, that we should emphasize community-centered models of health, feels warm.
But in 2019, in the middle of another surge of preventable childhood diseases, the book dangerously conflates the reasonable fears that accompany parenthood with unnecessary, even dangerous ones. A Greek chorus of unnamed peers — “another mother,” and “a mother I knew”— reappears to feed Biss’s own anxieties about vaccines. “For some of the mothers I know, a refusal to vaccinate falls under a broader resistance to capitalism,” she writes, and “The proliferation of childhood vaccines has become, for some of us, a kind of metaphor for American excess.” These lines mix the reasonable anxieties with ones that ought to be dismissed. Worry about the chemicals in baby formula, sure. Delay a single vaccine, for God’s sake, no. More than a few times in On Immunity, I wish that Biss had been able to drop out of the lyric and into graceless, direct facts.
I asked Dr. Scott Frank, the director of Public Health Initiatives in the Department of Population and Quantitative Health Sciences at Case Western Reserve University’s medical school, about On Immunity and contemporary conversations about vaccines. He also had concerns about how On Immunity has aged, saying that Biss’s “attitude in the book became a flag-bearer for feelings that have become larger” since its publication. He framed Biss’s rhetoric one that belongs to a younger generation, one that hasn’t “lived through times when we [doctors] cared for patients with measles and meningitis, diseases that robbed kids of their lives and their brainpower.” He stressed that vaccinations, like all medical decisions, do not offer a “guarantee,” and that parents, like any other patient, are “looking for a greater level of certainty than is available to them.”
In a recent interview with New York Magazine, Biss revisited the main ideas in her book: that vaccine effectiveness depends on whole communities, that individuals who are vaccine-hesitant can be convinced that they must at least vaccine their child to protect kids who, for legitimate medical reasons, cannot receive vaccines.
“People who have an anti-vaccine stance and people who have a pro-vaccine stance are often working with at least some of the same information,” she said. “I don’t think it’s a problem of misinformation; it’s a problem of analysis.”
I disagree. It’s an issue of false information and it’s an issue of optics. Early parenthood drowns parents in a bath of sensory experiences. Your child coughs. Your child cries without end, you offer food, you position them in various ways for optimum burping and farting. Those are vivid sensory details. They will keep you up at night. Vaccines, meanwhile, work invisibly. You do not see your child’s immune system train and fortify itself against mumps or polio.
Biss told New York that fear-based appeals “don’t have a tremendous effect” on her. Fine. But might they on others? Frank is skeptical. “Using anti-tobacco campaigns as a model, fear campaigns haven’t been demonstrated to be very effective,” he said. “The most effective counterarguments for tobacco were not talking about impacts on the body, but instead were aimed at the manipulation of tobacco corporations.” Parents could use a reminder that individual billionaires and monolithic tech companies like Amazon often fund, directly and indirectly, anti-vaccine groups. Amazon in particular has been a key territory for anti-vaccine groups. Through the Amazon Smile program, proceeds from Amazon purchases could go to charities of the buyer’s choice, including anti-vaccine organizations. Until March, Amazon had no problem stocking anti-vaccine manifestos and books on the site.
At the end of our conversation, Frank offered me a quote: “The world belongs to those who show up.” This was a saying used by Hells Angels, who lobbied successfully against motorcycle helmet laws; they triumphed by organizing, petitioning, and calling their representatives. “The anti-vaccine movement is more passionate,” Frank said. “They show up. They generate anxiety among parents who may not have thought they were anxious before.”
No one tells you about the loneliness of parenting a young child, the way even talking with your partner in the haze of your child’s infancy can feel like two people muttering through busted walkie-talkies. The relief of meeting new parents and finding playmates for your kids has a safety valve forged through social contract: neither of our children will give the other a disease that could kill them. But now, before we socialize with other young families for the first time, my wife and I craft emails and texts — not opaque but not too blunt, we hope — to test the waters. “Are your kids caught up on their shots?” reads better than “Have you vaccinated your children?” I never quite know how other parents whom we’d like to get to know receive these missives.
It’s been difficult to manage my own outrage and fear these days, my own desire to prod hesitant parents and to shame organizations who deny the efficacy of vaccines. It can feel like the pools of dangerous, anti-science Facebook pages have spilled out of the internet and into the real-world spaces in which children exist. I wish that my peers, medical professionals and thinkers I admire around could shed some ambiguity for a little bit more action, a little bit more justified passion.
But maybe that’s my own problem. Maybe the ideas of community that Biss and Frank and Hotez are all interested in can become a clear-eyed community of people who can call out institutionalized anti-vaccine sophistry and council young parents we know into doing the right — the objective, good, ethical, safe — thing. Among their many gifts, vaccines help us not to be alone.