Escaping Catch-22 - Overcoming Covid Vaccine Hesitancy - BINASSS

 
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                                           Medicine a nd So cie t y

                                                            Debra Malina, Ph.D., Editor

                   Escaping Catch-22 — Overcoming Covid Vaccine Hesitancy
                                                           Lisa Rosenbaum, M.D.

                On September 8, 2020, AstraZeneca announced                reluctant.1 The behavioral obstacles to wide-
                that it was pausing its late-phase SARS-CoV-2              spread vaccination are thus as important to
                vaccine trial because of a serious adverse event           understand as the scientific and logistic hurdles.
                in a U.K. participant. The next day, my hair-                 Accordingly, since September, I have been
                dresser, Ms. J., asked me what I thought about             talking with people about their perceptions and
                the news. I said the halting of the trial to inves-        concerns about Covid-19 vaccination. Before the
                tigate the adverse event was reassuring — an               election, people often mentioned the prospect
                example of science doing its job. “What do you             that a vaccine would be approved prematurely by
                think?” I asked.                                           a desperate Trump administration, but concerns
                   “There’s no effing way I’m getting a vaccine,”          about long-term safety are common, persistent,
                she said.                                                  and not unfounded. Even though adverse events
                   Ms. J., who lives in New York City, had                 tend to occur within the first 6 to 8 weeks after
                Covid-19 in April. Though she didn’t require
                ­                                                          vaccination, vaccines are typically not approved
                hospitalization, the virus incapacitated her for           until 2 years of follow-up data have been gath-
                weeks, leaving her weak and unable to tolerate             ered. In addition, some SARS-CoV-2 vaccines,
                solid foods; for months, she continued to be-              such as those based on messenger RNA, use new
                come dyspneic with exertion. She was terrified             technologies for which long-term data are lack-
                of getting the virus again and derived little com-         ing. We also don’t yet know the durability of
                fort from the possibility that she had enduring            immunity, the degree to which vaccines prevent
                immunity. Yet the prospect of getting a Covid-19           asymptomatic infections, or whether boosters
                vaccine was even scarier. Emphasizing the haste            will be necessary, especially given the emergence
                of vaccine development, the need for long-term             of viral variants. In the midst of a pandemic that
                safety data, and concern that side effects could           is taking thousands of lives daily and devastat-
                “make everything worse than it already is,” Ms. J.         ing society, many people will find these uncer-
                added that most of her friends and relatives were          tainties acceptable. But for others, as with many
                similarly “really suspicious” of the vaccines.             trade-offs in medicine, the magnitude of benefit
                   And they are not alone. Though many people              may have less emotional resonance than the
                initially believed a vaccine was the magic bullet          possibility, no matter how minimal, of risk.
                that would save us from a devastating pandemic
                and return our lives to normalcy, we now find                         More Than Me ss aging
                ourselves contemplating simultaneously how to
                ethically allocate a limited number of vaccine             For those with intent to be vaccinated, interven-
                doses to the many people who want them and                 tions such as default appointments and onsite
                how to increase vaccine uptake among those                 vaccination effectively increase uptake.2,3 Less is
                who don’t. Though estimates vary, public health            known, however, about how to increase uptake
                officials suggest that about 80 to 85% of Ameri-           by modifying the beliefs of the hesitant. In one
                cans would need to be vaccinated for the country           randomized trial targeting parents with children
                to achieve herd immunity. Vaccine confidence               eligible for the measles–mumps–rubella (MMR)
                seems to be rising, but recent polling suggests            vaccine, researchers tested various messaging
                that about 31% of Americans wish to take a wait-           strategies that either corrected misinformation
                and-see approach, and about 20% remain quite               or had emotional appeal. One strategy refuted

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                          the claim that vaccines cause autism, while others         are not issues that can be addressed by merely
                          featured pictures of children with the diseases            changing the message or giving ‘more’ or ‘better’
                          the MMR vaccine prevents or a dramatic narra-              information.”6 Though the pandemic has cast
                          tive about an infant who nearly died of measles.4          the dangers of misinformation into stark, soul-
                              These strategies not only failed to increase           crushing relief, the gravity of a falsehood’s con-
                          intent to vaccinate, but among vaccine skeptics,           sequences doesn’t render it more correctable
                          they actually did the opposite. Graphic pictures           with truth.
                          of a child with measles increased fears of vac-               Larson’s own thinking was transformed in
                          cine-related side effects rather than fear of the          2003, when, while overseeing vaccine strategy
                          disease itself. And though accurate information            and communication at UNICEF, she was called
                          reduced the misperception that vaccines cause              to Nigeria, where a government-led boycott of
                          autism, intent to vaccinate still decreased among          the polio vaccine was under way. There, Larson
                          the most hesitant parents. Extrapolating these             discovered that resistance reflected not specific
                          findings to a paralyzing pandemic comes with               concerns about the vaccine but rather a conver-
                          countless caveats, foremost among them that vac-           gence of broader social factors, including rumors
                          cination will initially target adults. Nevertheless,       that Western vaccines were intended to sterilize
                          as we embark on far-reaching messaging cam-                children; a fear, in the aftermath of 9/11, that
                          paigns, some humility about our intuitions about           the United States was at war with Muslims; and
                          human behavior is in order.                                ongoing conflict between the local and central
                              We do know that the confidence of physi-               governments. Quashing the rumors seemed to
                          cians and public health officials can be instru-           matter less than addressing the nexus of ques-
                          mental in allaying people’s fears.2 One elderly            tions, concerns, beliefs, and historical forces
                          couple I spoke with in October, for instance,              that gave rise to them. Though the reasons for
                          after expressing reservations about a vaccine be-          skepticism may vary among communities, Larson’s
                          ing approved prematurely for strictly political            approach to vaccine hesitancy is universally
                          reasons, concluded, “If Anthony Fauci approves             relevant: before you attempt to persuade, try to
                          it, we will go for it.” This sentiment is consistent       understand.
                          with what we know about vaccine uptake in gen-
                          eral: the seemingly most effective way to increase                          The Undecideds
                          vaccination rates is with clinician recommenda-
                          tions.2,5 As Robert Jacobson, a Mayo Clinic pedia-         Mr. K. is a 56-year-old man who avoids vaccines
                          trician who studies vaccine hesitancy, pointed out,        and decided with his wife not to vaccinate their
                          since health care workers are among the first              children. “People disregard you as a conspiracy
                          groups to be vaccinated, they will be able to speak        theorist,” he told me, “but we put a lot of
                          to their patients with authority and confidence:           thought into making that decision.” Many of
                          “I got this vaccine, and I want you to have it, too.”      Mr. K.’s beliefs were informed by his father-in-law,
                              As critical as recommendations from trusted            a pediatrician who has concerns about the safety
                          authorities will be, in an environment rife with           of vaccines. “He is not a pharma-driven doctor,”
                          misinformation and distrust of expertise, dis-             Mr. K. explained. “He’s not part of the medical
                          seminating evidence-based information may be               establishment.” The problem with that estab-
                          insufficient to persuade some people. That’s               lishment, as Mr. K. sees it, is not just its drug
                          partly why Heidi Larson, an anthropologist at              pushing and profiteering, but its censoring of
                          the London School of Hygiene and Tropical                  people who disagree. For instance, in July, when
                          Medicine whose recent book, Stuck, summarizes              social media companies removed a viral video
                          her decades of research on vaccine hesitancy,              of physicians suggesting (misleadingly) that hy-
                          sees Covid-19 as an opportunity to rethink our             droxychloroquine was an effective treatment for
                          approach to vaccine uptake. Larson, who studies            Covid-19, Mr. K. saw a parallel to attempts to
                          rumors, cautions against the impulse to merely             quash antivaccine sentiment. “What is going on
                          correct misinformation and assume our work is              with this country where people can’t make their
                          complete. Writing before the pandemic, Larson              own decisions?” he asked. “I try to find the sci-
                          observed that “Vaccine reluctance and refusal              entists out there who aren’t afraid of losing a

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                grant — people who have nothing to lose if they           technology that delivers microparticles intrader-
                speak the truth.”7,8                                      mally during vaccination, creating a digital vac-
                   In both his aversion to mainstream medicine            cine record.10 The research, funded by the Gates
                and his perception that people questioning medi-          Foundation before Covid, aims to address the
                cal dogma are censored, Mr. K. highlights a               challenge of vaccine record keeping, particularly
                Catch-22 of vaccine hesitancy: by challenging             in low-resource countries. Although this technol-
                untruths, we may inadvertently feed the percep-           ogy is not present in any Covid vaccine, Johnson,
                tion that the “real” truth is being suppressed.           who has been monitoring vaccine sentiment on-
                Larson describes in her book the fallout after            line throughout the pandemic, cautioned against
                pressure from the scientific community resulted           dismissing the rumor as mere misinformation.
                in removal of the antivaccination film “Vaxxed”           “We can hope that Bill Gates won’t eventually
                from the Tribeca Film Festival in 2016. The pull-         use it to track Covid vaccine behavior, just like
                ing of the film confirmed the belief of vaccine           we hope our neighbors won’t one day wake up
                doubters that physicians and scientists are un-           and plow their car into our house,” Johnson said.
                willing to engage with any dissent. Moreover,             “They could in principle, but it’s highly unrea-
                notes Larson, these instances of so-called cen-           sonable to think that they would.” If the vaccine
                sorship attract people who, while not necessarily         hesitant feel that they’ve been unfairly accused
                antivaccine, identify with broader rights agendas         of spreading misinformation, Johnson explained,
                promoting “freedom” and “a fundamental dem-               they become further emboldened in their doubts.
                ocratic right to choose.”6                                Even ideologically disparate groups unify around
                   Indeed, while people firmly opposed to all             such shared skepticism.
                vaccines may be relatively few in number, they                Johnson’s observations remind us why teach-
                wield outsized influence, particularly on social          ing the public to “understand science,” the seem-
                media, over the undecideds. A recent study of             ingly obvious way to mitigate antiscientific sen-
                expressions of vaccine-related sentiments by 100          timent, may fall short. Many discussions about
                million Facebook users found that antivaccine             science denialism conclude with some version of
                clusters of people, though less numerous than             “We just need to get the public to understand
                provaccine clusters, have a more central pres-            science.” But evidence suggests otherwise. Sociol-
                ence in large networks and interact with more             ogist Gordon Gauchat, for instance, in describ-
                undecided clusters.9 Provaccine clusters, mean-           ing temporal trends in distrust in science, has
                while, engage predominantly in smaller networks,          shown that at least among conservatives, it’s the
                so even though they exert less influence, they            most educated subgroup who have become in-
                often have the “wrong impression that they are            creasingly skeptical.11 One possible explanation
                winning.” Provaccine clusters are also disadvan-          is that highly educated people are more facile at
                taged by the tendency toward “monothematic”               finding evidence to support their views or in
                messaging, whereas antivaccine pages deploy               poking holes in evidence that doesn’t. Accord-
                multithemed narratives to broaden their appeal,           ingly, in a 2019 essay on the so-called crisis in
                touching on safety concerns, alternative medi-            truth, in which antivaccine sentiment features
                cine, Covid-19 (both causes and cures), and               prominently, history-of-science professor Steve
                various conspiracy theories. In response to these         Shapin makes the surprising argument that there
                dangerous disinformation campaigns, social me-            isn’t “too little science in public culture,” but
                dia companies have intensified efforts to label           “too much.”12 That’s partly because people who
                falsehoods and eliminate them. But as Neil John-          deny climate change or reject vaccines co-opt the
                son, a physicist and the study’s first author, ex-        language of science to bolster the legitimacy of
                plained to me, such efforts can backfire.                 their views. Their arguments, Shapin writes, are
                   One of the most widely shared Covid con-               often “garnished with the supposed facts, theo-
                spiracy theories, for example, is that the vaccines       ries, approved methods, and postures of objec-
                contain microchips that will be used by elites            tivity and disinterestedness associated with gen-
                (Bill Gates is often mentioned) or by the govern-         uine science.”
                ment to track people’s behaviors. People propa-               Where do these bleak observations leave us as
                gating the rumor often point to a study of a new          we seek to raise confidence in Covid vaccines?

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The   n e w e ng l a n d j o u r na l    of   m e dic i n e

                                  Fr om S tigma to Empathy                           and wanted Larson to know how well she’d been
                                                                                     cared for by the trial’s clinicians. “The scientists
                          As the pandemic has sharpened the polarization             were doing the right thing,” Larson told me,
                          over science, disdain for science denialism has            “but they weren’t communicating it.”
                          made it easy to conflate true antiscientific senti-            Of course, people who are determined to un-
                          ment with simple fear of the unknown. In my                dermine confidence in vaccines will always find
                          many conversations about vaccines, what struck             ways to spread misinformation. But a much
                          me most was the shame that often preceded any              larger proportion of the population may be will-
                          expression of doubt. Some people simply refused            ing to get vaccinated given the proper reassur-
                          to talk to me; others, particularly those who              ances, and dismissing their concerns often leaves
                          work in health care, were skittish about being             them seeking someone to validate them. I sus-
                          identifiable. And those who had questions of-              pect that’s one reason why correcting misinfor-
                          ten prefaced them with “I’m not an antivaxxer              mation often falls short. Some people, for in-
                          but . . . .” One common question, for instance,            stance, may truly believe that vaccines cause
                          was whether people who are young and unlikely              autism. But for others, this ostensible fear may
                          to die of Covid should get a vaccine whose long-           mask less easily expressed needs such as main-
                          term side effects are unknown.                             taining one’s identity, belonging to a group, or
                              My instinctive response to this sort of ques-          simply being heard. And yet respecting these
                          tion is to emphasize the population benefits of            more basic instincts also raises an uncomfort-
                          vaccination and the reality that some young                able question: At what point does empathy sac-
                          people do die from Covid and that even survivors           rifice scientific truth?
                          may have long-term sequelae we don’t fully un-                 Or perhaps this is a false dichotomy. One of
                          derstand. But why not simply acknowledge the               my best friends practices in a region where many
                          legitimacy of the concern? For many of us in the           people, including some health care workers and
                          medical community who are haunted by the con-              patients in her practice, are hesitant to get vac-
                          sequences of science denialism, validating any             cinated. Even my friend — whose brilliance and
                          aspect of vaccine skepticism may feel like rip-            rationality I have always admired — has reserva-
                          ping your mask off in a crowded elevator. But it           tions about vaccination, though she knows that
                          isn’t “antiscience” to admit that we still don’t           expressing them is taboo. But I think that it’s
                          know some things. It’s just truth.                         only because she understands why people are
                              Nevertheless, among people who take no sol-            scared that she’s effective not just at allaying
                          ace in rigorous science, more than transparency            fears, but at convincing people who don’t know
                          will be needed to build trust. Larson notes how            anyone who’s willing to get vaccinated that what
                          quick the scientific community is to justify medi-         is known about the vaccine is more important
                          cal recommendations by saying, essentially, “Sci-          than what isn’t. Indeed, the staff members who
                          ence said so.”13 Referring to the pausing of the           were initially reluctant to be vaccinated, changed
                          AstraZeneca trial due to an adverse event, for             their minds after speaking with her.
                          instance, Larson notes how much of the media                   Although the scientific community’s obliga-
                          coverage featured scientists noting the “normal-           tion will always begin with championing truth,
                          ity” of pausing a trial to investigate any adverse         the pandemic has shown that society’s health
                          events. To Larson, though, this response lacked            also depends on understanding why so many
                          expressed empathy for the person(s) who experi-            people reject it. While some trust scientific ex-
                          enced an unexpected reaction. “It’s not normal             perts, Larson notes that others seek “truth” else-
                          for the person who was hurt,” she said. In our             where — their experiences, perhaps, or “heard
                          rush to defend the vaccine and the evaluation              truths” from their social networks. The pan-
                          process, the scientific community may fail to              demic, then, has reminded Larson why getting
                          convey how the participant’s symptoms were ad-             the public to understand science may be insuf-
                          dressed, though it’s the latter — more than fidel-         ficient.14 Maybe, she suggests, it’s also time for
                          ity to science — that may be foremost on peo-              science to understand the public.
                          ple’s minds. After speaking on the radio about                 This article is Part 1 in a two-part series. Next
                          this oversight, Larson was contacted by a trial            week: “No Cure without Care — Soothing Sci-
                          participant who’d experienced an adverse event             ence Skepticism.”

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                   Identifying details have been changed to protect people’s                         receipt or intention to receive adolescent vaccines. Hum Vaccin
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