Nikki Hill Johnson took her first daughter for her routine vaccinations shortly after her birth in 2012. However, her perspective on vaccines dramatically shifted after joining a South Carolina-based multilevel marketing (MLM) company focused on fitness and nutrition, where a colleague raised concerns about vaccine safety.

“I recall a discussion where someone spoke about their child being ‘vaccine injured’,” Johnson shares. “It ignited a sense of fear in me.” The concept of immunizations and their schedules felt overwhelming. “I struggled with conflicting feelings, thinking, ‘I’m not trained in this, I don’t know enough,’” she admits.

Doubtful of her decision to vaccinate her daughter, Johnson immersed herself in “crunchy” Facebook groups populated by mothers worried about harmful substances affecting their kids and began taking advice from a family member in the nursing profession who held anti-vaccine views.

For her subsequent three children, Johnson opted against vaccinations, which put them at increased risk for infections associated with high infant mortality rates such as invasive pneumococcal disease, Haemophilus influenzae, and whooping cough.

“I genuinely believed I had done my research,” Johnson recalls. She turned to sources she considered credible, like the book “Dissolving Illusions” by Suzanne Humphries and Roman Bystrianyk, which propagates the belief that improved hygiene, not vaccinations, was primarily responsible for the decline in infectious diseases. Along with her anti-vaccine community, she harbored suspicions about the medical establishment, suspecting it profited from unsafe vaccines. Refusing vaccinations felt like a challenging yet principled stand.

Eager to share her newfound beliefs, Johnson built a following online, relishing the opportunity to discuss vaccine “risks.” “I felt a rush of excitement when I spoke with other moms about my views,” she recalls. “Looking back, I regret the guidance I provided.”

By 2020, Johnson’s viewpoint underwent a significant change. She began to see her MLM workplace as a setup. “I experienced initial success, but then it seemed to vanish. Watching anti-MLM content made me realize everything I believed was part of a larger deception,” Johnson explains. Moreover, seeing a trusted family member become deeply involved in the QAnon conspiracy left her questioning her ability to trust their judgment.

As Johnson examined how misinformation propagates online, she reassessed the wellness content she had previously embraced while following more experts in epidemiology and public health.

Changing her stance on vaccines, wellness fads, and diet culture, Johnson found herself ostracized from her mother’s community but was unperturbed. She sought help from her pediatrician to catch up on her children’s vaccinations. “[Pediatricians] understand that many have been influenced by anti-vaccine narratives,” Johnson shares. “They support families in getting back on track.”

Today, Johnson has moved beyond the anti-vaccine myths that once defined her. For experts and advocates in the field, stories like hers represent a potential breakthrough. As skepticism around vaccines escalates in the U.S., can we overcome the noise to provide necessary healthcare?

Why Vaccine Hesitancy is Increasing in the U.S.

The anti-vaccine movement has roots dating back to the mid-1800s during resistance to mandatory smallpox vaccinations. Even before the Covid-19 pandemic, anti-vax activism intertwined with political movements, fueled by fears of government control and personal liberty. Recently, this sentiment has intensified due to distrust in medical institutions, anxiety stemming from the pandemic, and the spread of misinformation on social media.

While vaccines can cause temporary side effects, such as soreness or mild fever, reputable scientists studying infectious diseases consistently assert that vaccines are far less risky than the diseases they are designed to prevent, according to Dr. Joe Pierre, a psychiatry professor at UCSF and author of False. Extensive studies have repeatedly debunked conspiracy theories alleging vaccines cause autism.

Despite this, a recent survey from the Annenberg Public Policy Center revealed that the percentage of respondents perceiving vaccines as unsafe rose from 9% in April 2021 to 16% by fall 2023. Additionally, vaccination coverage for kindergarteners has declined post-2020, after a decade of steady rates.

In 2024, immunization rates for the MMR (measles, mumps, and Rubella), DTaP (diphtheria, tetanus, and pertussis or whooping cough), polio, and varicella decreased across more than 30 states compared to the previous year. The vaccination rates for children have fallen below the herd immunity benchmark for numerous preventable diseases such as mumps, whooping cough (which resulted in dozens of deaths in the U.S. recently), and measles, which is now infecting more Americans than ever and surged 20% globally in 2023. Recently, there was an incident in Texas where an unvaccinated child died due to complications from measles.

“Part of the challenge is that individuals often evaluate the risks and rewards of vaccines solely based on personal experiences,” Pierre explains. “They might think: ‘I received a flu shot last year and still got the flu,’ or ‘I haven’t gotten the flu in five years, and I’ve never been vaccinated.’ They neglect the communal benefit of vaccination, which includes preventing widespread illness and safeguarding the most vulnerable individuals, such as elderly family members.”

Vaccine skepticism has gained a prominent figure in Robert F Kennedy Jr, who now leads the U.S. Department of Health and Human Services. During a July 2023 podcast, Kennedy falsely claimed: “There’s no vaccine that is safe and effective,” despite the robust scientific evidence that shows vaccines substantially reduce the incidence of severe disease and mortality worldwide. Kennedy has even perpetuated the disproven 1998 study that links the MMR vaccine to autism.

Similarly, Jay Bhattacharya, a skeptic of vaccine safety, has been nominated to helm the National Institutes of Health (NIH).

Kennedy has garnered a receptive following among mothers who view themselves as protectors of their children and serve as the main healthcare decision-makers in their families. “It’s manipulative to hear someone speaking with authority, leading you to believe, ‘That must be the truth’,” Johnson reflects. “Moms are unknowingly advancing this misinformation.”

The persistence of anti-vaccine rhetoric may also stem from its profitability. A study from the Center for Countering Digital Hate found that 70% of Covid-19 anti-vaccine disinformation produced between February and March 2021 was attributed to only 12 individuals who collectively made around $36 million. Notable among them is Joseph Mercola, who earned $7.2 million during the pandemic peak, and RFK Jr, who received a salary exceeding $500,000 for leading the anti-vaccine organization Children’s Health Defense in 2021, among other financial gains from his anti-vaccine stance (Kennedy’s own children are vaccinated).

How Disillusionment Prompted a Paradigm Shift

Lydia Greene, a 43-year-old from Alberta, had her firstborn vaccinated in 2008. Afterward, her daughter exhibited severe distress and a lack of appetite. Greene reached out to the Public Health Agency of Canada’s hotline, but her worries were dismissed by a nurse, leaving her feeling “embarrassed” for being a nervous new mother amplifying a trivial concern.

Still anxious, Greene turned to online forums. There, she encountered a troubling yet false theory claiming babies lacked a blood-brain barrier, rendering them susceptible to vaccine-related brain injuries. “I found discussions implying that no one would admit these complications stemmed from vaccines, but that my baby was likely experiencing pain,” Greene recalls with growing panic.

The anxiety drove Greene to forgo vaccinations for her next two children.

Her realization came during the early days of the Covid-19 pandemic when she watched her anti-vaccine group abandon preventive measures like hygiene and masking. It appeared to her as “more contrarian than critically analytical.” Additionally, Greene couldn’t find any legitimate research validating the claim about infants lacking a blood-brain barrier and was taken aback to notice members of her anti-vax circles espousing bizarre beliefs like the Earth being flat.

“I really made a mistake,” Greene reflects. “It was a challenging journey.”

Dramatic shifts in belief often occur when individuals become disillusioned with once-respected figures or experience cognitive dissonance that pushes their limits, according to Pierre.

Both Greene and Johnson re-evaluated their anti-vaccine stances when their previously trusted circles began to drift into what some call the “conspiracy singularity,” a worldview where legitimate medical apprehensions intertwine with far-fetched conspiracies like Pizzagate and lizard people.

However, such significant changes in belief are exceptions rather than the norm, as Pierre points out. Instead, when faced with contradictions, people often double down on their beliefs. “Cognitive dissonance frequently results in individuals getting even more entrenched in their views,” he observes.

The Power of Personal Stories in Shaping Perspectives

Researchers have suggested that individual narratives, such as those of Johnson and Greene, may resonate more effectively than mere facts in swaying vaccine skeptics. To reach those hesitant about vaccines, it’s essential to contextualize and humanize scientific evidence, the authors of a 2021 report argue. Vaccine advocacy groups often include personal accounts to illustrate the dangers of preventable diseases.

Such stories highlight the potential harm tied to anti-vaccine ideologies, impacting not only infection risks but also distorting children’s comprehension of the world around them. For example, Violet Adams, 32 (a pseudonym), recalls growing up in British Columbia with parents who instilled a deep fear of vaccines. “Hearing that ‘the world is controlled by an evil cabal’ was incredibly traumatizing as a child,” she states.

During her university years, she realized that her science professors were knowledgeable and not “brainwashed.” This exposure led to a transformation in her beliefs.

Many vaccine-preventable diseases, such as polio or smallpox, may seem like distant memories to the general public, making the consequences difficult to grasp. Greene emphasizes that public health messaging should illustrate the realities of vaccine-preventable illnesses, noting, “[People] need to understand what diphtheria looks like and how it can suffocate and kill.” Dr. Umair Shah, former Secretary of Health in Washington State, indicated that only the death of a prominent individual from a vaccine-preventable disease might prompt a resurgence in vaccination acceptance.

Experiencing vaccine-preventable diseases can serve as a wake-up call. In 2015, former anti-vaxxer Kristen O’Meara witnessed her three children endure severe rotavirus infections. “It was a nightmare, and it was entirely preventable because I could have vaccinated them. I felt immense guilt,” she recounted during an interview, which prompted her to change her mind about vaccinations.

Additionally, institutions must aim to present factual information in ways that appeal psychologically, suggests Pierre. Conspiracy theories often fulfill psychological needs—such as a desire for uniqueness, control, and social connection. Campaigning for truth can provide a powerful sense of purpose; consider Johnson’s experience of a “dopamine rush.” Greene found fulfillment in becoming a vaccine advocate— a healthier way to meet those needs. Now a nurse and co-founder of Back to the Vax, she helps connect parents who previously doubted vaccination, serving as a representative for Voices for Vaccines.

How Information and Support Foster Change

Dr. Devon Greyson, a health information scientist, has explored the journeys of mothers who altered their vaccine attitudes, aiming to uncover effective strategies for change.

In a 2022 study, Greyson conducted interviews with 23 mothers in Vancouver whose vaccination views evolved—whether shifting toward pro-vaccination or further away from it.

Mothers who embraced vaccinations recounted their transitions as a journey from fear to factual understanding, guided by reliable health authorities and concrete experiences. They benefited from supportive, non-judgmental environments, the freedom to ask healthcare professionals questions, and witnessing firsthand that vaccines did not harm their children. Greyson proposes that this framework may assist in engaging vaccine-hesitant individuals: rather than merely urging them to “trust science,” we should encourage insights in scientific inquiry—prompting questions to credible experts and identifying trustworthy sources while maintaining intellectual flexibility.

In contrast, mothers who grew more skeptical often described an experience steeped in anxiety and fear, typically ignited by dismissive interactions with healthcare providers. Feeling sidelined by medical professionals led them to seek explanations in online communities that only fueled their doubts.

Healthcare providers have a critical role in fostering vaccine confidence and guiding parents toward viewing themselves as thoughtful, scientific thinkers.

Yet, as Dr. Kimberly Martin, a postdoctoral associate at Yale, points out, physicians face immense pressure and time constraints. However, even minimal efforts to build trust—such as directing patients to reliable information and support—hold significant value in aiding families toward informed decisions, especially in the context of Black Americans’ experiences with healthcare and vaccine hesitancy.

Research indicates that proactive strategies like “prebunking” can be effective. These strategies involve preemptively addressing vaccine conspiracies, providing resources like the Jitsuvax project, a collaboration of academics and clinicians aiming to combat misinformation before individuals encounter it online.

Though there is no foolproof method to reverse anti-vaccine beliefs, early and compassionate support from both community and healthcare practitioners, alongside the willingness to adapt based on facts and critical thinking, can be transformative. Johnson, Adams, and Greene adjusted their views not through debate but rather openness and security.

Johnson is dedicated to instilling a robust foundation in scientific reasoning within her children. “I strive to teach my kids critical-thinking abilities,” reflects Johnson. “If I can be vulnerable, anyone can fall prey to misinformation.”