Beyond us and them: The role of trust in vaccine controversy

When it comes to the fraught topic of vaccines, Julie Rehmeyer is sometimes balancing on a razor-sharp edge.

She’s a science writer with an advanced mathematics degree from the Massachusetts Institute of Technology. She also has many friends who, like her, have struggled with poorly understood diseases and share a distrust of the medical establishment as a result. For many that trust carries over to vaccines. Ms. Rehmeyer, whose memoir “Into the Shadowlands” chronicles her struggles with chronic fatigue syndrome, says she’s often hesitant to wade into the topic on public forums like social media because of how loaded it can be. But she also feels as if she occupies an unusual space in such a polarized realm.

“I value and respect people who don’t value and respect one another,” she says. “A lot of science writers don’t know anybody they respect who is hesitant about vaccines. ... Whether [those who are skeptical of vaccines] are right or not, this is an issue that deserves compassion and deserves to be taken seriously. It’s not the case that this is just a whole bunch of anti-science crazy people.”

The United States is experiencing its worst measles year since 2000, with more than 750 cases reported so far. The outbreak is due primarily to the fact that the disease has exploded globally, and international travelers have brought it back to the U.S. But it has spread in communities with low vaccination rates, including some in New York and Washington state.

With the increase in measles cases has come a renewed focus on those who delay or opt out of vaccinating, with angry rhetoric on both sides. Those who comply with the required vaccine schedule often feel that vaccine skeptics are needlessly endangering the broader community. Non-vaccinating parents, meanwhile, can feel attacked and misunderstood.

The reality, say experts, is more nuanced than the shrill extremes on social media might lead us to believe. Yes, vaccine hesitancy, as it’s often known, is a serious issue. The World Health Organization listed it as one of its 10 threats to global health in 2019. But, in the U.S. at least, broad compliance rates are high enough that there’s no large concern in most communities. And reasons for not vaccinating – or for simply feeling unsure about it – can vary widely, and often hinge on a lack of trust. The solution, in that case, is rarely about shaming, or even stricter mandates, but working to understand why that distrust exists in the first place.

“We have to reframe this debate,” says Bernice Hausman, a humanities professor at the Pennsylvania State College of Medicine and author of the new book “Anti/Vax.” “Framing it in terms of misinformation and scientific illiteracy is not helpful at this point.”

Ultimately, says Professor Hausman, “vaccination controversy is not a scientific problem, it’s a social problem. ... We need people who understand how to understand culture, how to understand why people come to the beliefs they hold, and why it’s hard to change certain beliefs.”

A gap in trust

The science around vaccines is clear: They involve negligible risk and huge societal benefit, and in order to be most effective, they require the vast majority of a community to be vaccinated (for a disease like measles, the rate is about 95%). The most vulnerable members of a population are those with the most vested interest in their surrounding community getting vaccinated: those too young to be immunized or who have medical reasons to avoid vaccination.

But while it’s common to stereotype “anti-vaxxers” as selfish, science-illiterate, or believing in debunked studies like the one connecting vaccines with autism, many are, in fact, thoughtful, educated, or may have real reasons for their lack of trust. The portion of people truly unwilling to vaccinate, at all costs, is very small, say experts – perhaps 2% of the population. A much larger portion of the population – 40% to 70%, depending on the study – exhibits some degree of “vaccine hesitancy,” even though most fully comply with vaccine laws.

“There’s huge diversity in motivations,” says Mark Navin, an applied ethics professor at Oakland University in Rochester, Michigan, who has extensively studied vaccine resistance. Several of the biggest outbreaks this year occurred in Orthodox Jewish communities. That’s not surprising, he notes, given that these are insular communities with fairly frequent travel to Israel, one of the countries currently experiencing a significant measles outbreak. But just as telling, he adds, is the strained history that some of these communities have had with public health departments.

While there is every reason to trust government officials on vaccine safety, Professor Navin emphasizes, some of the underpinnings of broader distrust are legitimate: the opioid epidemic driven by big pharmaceutical companies; profit motives in that industry; poor information about things like water safety; or even unethical programs that targeted some disadvantaged communities.

“The history of public health is full of abuses,” says Professor Navin. “Given this history, and given this context of reasonable distrust, it’s helpful to begin by realizing there’s a positive responsibility on the part of physicians and public health and government to build this trust.”  

Instead of asking why people don’t vaccinate, he adds, it can be helpful to ask why so many people do. In general, the research shows that it’s because they trust their doctors, have no reason to worry, and have no history of bad treatment around vaccination.

“Public health is not about convincing stupid people what they’re supposed to do, but about developing relationships and trust, and that takes resources and sustained efforts,” says Professor Navin.

When the outbreak in Southeast Michigan occurred recently, he adds, health officials had an existing relationship with the rabbis, and within a period of a week got 2,000 members of the community to show up for MMR (measles, mumps, and rubella) shots.

“Public health workers will tell you the most important thing in an outbreak is having good relations with the community,” says Professor Hausman of Penn State.

What’s changed?

While it’s getting increased attention now, the issue with vaccine hesitancy is hardly new.

“There has been vaccine resistance as long as there has been compulsory vaccination,” says Elena Conis, the author of “Vaccine Nation” and a journalism professor at the University of California, Berkeley. And many of the reasons for the resistance have remained consistent, she says: concerns about risks, concerns about incursions on personal liberty, and religious objections. (For example, some Christian Scientists choose not to vaccinate for religious reasons.)

What’s somewhat new in the latest incarnation, Professor Conis says, is the degree to which some social movements have given people a vocabulary for voicing objections and the number of vaccines that are now compulsory.

“We’re asking more of our citizens with respect to vaccinations than we ever have before,” she says.

Peter Borten, a doctor of Chinese medicine and acupuncture in Boulder, Colorado, notes that the aggressive vaccine schedule is one of the concerns he hears from patients who are hesitant to vaccinate. Many tell him that they don’t trust the Centers for Disease Control and Prevention to clearly report vaccine risks. They may know someone who has had a legitimate complication from a vaccine or may have concerns about Big Pharma and “don’t trust that these companies care more about humans than profits,” he says.

He also acknowledges that the health risks from the diseases we vaccinate against, while low for most people, are higher for some vulnerable populations, like babies and pregnant women – another complicating factor. 

Dr. Borten and his wife have vaccinated their kids on a schedule that he feels minimizes the risk, but he says he still holds his breath when it’s time for his children to get another shot.

“The more I learn – and I actively try to stay well informed about it – the less opinionated I am,” writes Dr. Borten in an email. “In the end, the actual rate of vaccine complications is extremely low, and so is the risk of getting and being permanently injured by any of the diseases we have these vaccines against. This is important for people on both sides of the issue to remember.”

Fitting the message to the audience

Internationally, where vaccine hesitancy is a major reason for some outbreaks of disease, there’s a concerted effort to start addressing the problem, as well as calls for self-reflection on the part of the medical establishment.

“An anti-vaxxer in California, USA, for example, is vastly different from someone potentially exposed to Ebola in rural DR Congo. Yet there are similarities in their mistrust. A belief that vaccines cause autism or that Ebola is a government ploy likely has as much to do with wider grievances and distrust of authority as with the specifics of the scientific evidence and education,” opined a recent editorial in The Lancet, a premier medical journal. “Part of the problem is that a lack of faith in government, the health-care system, and pharmaceutical companies is not always irrational. ... It is impossible to build trust while at the same time abusing it.”

The medical community tends to shy away from social media programs, or from “softer” community engagement, but often that’s a more effective way to reach skeptics than just lecturing at them, says Heidi Larson, an anthropologist and director of the Vaccine Confidence Project, which monitors public confidence in vaccines around the globe and has developed an index that serves as an early detection of public concerns.

When there were big concerns in Denmark, Ireland, and some other countries around the HPV vaccine, which is recommended for adolescent girls to protect against cervical cancer, Dr. Larson says that the immunization program in Denmark brought together a group of young girls and helped them co-create a social media campaign. It was positive, pro-health, and the design and message were entirely created by the girls.

“It really helped,” says Dr. Larson, noting that Ireland then launched a similar campaign. “Kids can be real advocates. ... We need to think differently about how we engage with people from early on.”