There and Back Again: How Anti-vaxxers Change Their Minds



There and Back Again: How Anti-vaxxers Change Their Minds






A man should never be ashamed to own he has been in the wrong, which is but saying, in other words, that he is wiser today than he was yesterday.

—Alexander Pope

One of the challenges faced by medical providers in dealing with vaccine-hesitant patients is that many of us have lost hope. Perhaps we have tried to educate and to encourage and have been unsuccessful so many times that we no longer have confidence that we can make a difference. Or perhaps we have had such a negative or angry encounter with a patient or parent who is anti-vaccine that it has colored our view of these patients as unreasonable conspiracy theorists who will never change their minds. It is true that there are staunch anti-vaccine patients out there whose heels are dug in and are unlikely to be open to considering the other side. However, these are the minority of patients, and, as we will discover, these folks are likely to seek out providers who support their anti-vaccine sentiment and are unlikely to be coming to us anyway.

Most patients we work with fall into the vaccine-hesitant camp. They are people who were probably vaccinated themselves as children. They may understand the public health benefit that we have seen from vaccination efforts over the years. They want to do what is best for their personal health or for their child’s health, but various claims that they have heard from friends, family, and social media about toxins in vaccines and increasing rates of autoimmune disease and better immunity from natural infection give them reason for doubt. These are the patients with whom we have the greatest ability to reach. These patients are eager for dialogue. They have faith in their providers but need to have their concerns addressed (in a respectful way) in order to move forward with vaccination. They don’t doubt our motivations as a medical community. They are simply trying to make sure that their decisions are in the best interests of themselves or their child.

For those of us who have lost confidence that our efforts will pay off, this chapter should offer some glimmer of hope. In the pages to follow, we will talk to people who were initially in the anti-vaccine or vaccine-hesitant camp but who, for a variety of reasons, have changed their minds about vaccines and now speak up for the importance of immunization. We will look at how their initial anti-vaccine sentiment developed, the tactics and approaches used by the anti-vaccine community that fed their concerns, how a healthy relationship with the medical and scientific communities helped in their ideological shift, and recommendations they offer for providers who are working with vaccine-hesitant patients and families.


A special thanks goes out to Voices for Vaccines, a “parent-driven organization supported by scientists, doctors, and public health officials that provides parents clear, science-based information about vaccines and vaccine-preventable disease, as well as an opportunity to join the national discussion about the importance of on-time vaccination,1” for introducing me to the brave and insightful individuals who we will meet below. It takes a tremendous amount of courage to challenge your own beliefs, and I am eternally grateful to KO, LC, and CA for sharing their stories with us and offering us a light at the end of the vaccine-hesitant tunnel.


TELL ME ABOUT YOUR UPBRINGING IN REGARD TO VACCINES. WHAT DID YOUR PARENTS DO ABOUT VACCINES?

KO: I have two younger sisters. We were fully vaccinated according to the recommended schedule at the time. My mom has said that my middle sister screamed and cried inconsolably on the way home from the doctor after receiving vaccinations and came down with a fever. My mom wasn’t vocally anti-vaccine while I was growing up, but she was always skeptical of modern medical practice. Both my younger sisters were born at home because my mom hated having me in the hospital in 1976. She felt like she wasn’t in control of her body or her experience. Her legs were strapped into stirrups. She had an episiotomy and was not allowed to hold me after I was born because she had a slight fever in the hours after delivery. My mom joined La Leche League after my middle sister was born and I went to the meetings with her, surrounded by babies and breastfeeding moms and lots of talk about all things natural. It was definitely a nonmainstream, granola upbringing—especially for the time.

When I was pregnant with my first child and spoke with my mom about my concerns regarding vaccination, she said she shared those concerns. I don’t think she would have tried to convince me not to vaccinate if I was leaning that way, but she was definitely supportive of my decision not to.

LC: My mom decided not to vaccinate my two sisters and I. We got the chickenpox and I’m not even sure if I knew at 12…that there was a vaccine to prevent it. My mom did tell me our family physician had been lax on vaccines and told her something like “the kids will be ok without them.” I don’t know why she thought they were bad, though.

CA: My parents were the textbook early ‘80s/’90s parents. They did everything they could that their doctor said to do in reference to me and my younger sister’s health.


WAS THERE AN EVENT OR SERIES OF EVENTS/ENCOUNTERS THAT TRIGGERED DOUBTS FOR YOU ABOUT VACCINES?

KO: My upbringing primed me for having doubts about vaccines. As a young adult I grew increasingly interested in all things “natural,” but probably had a bit of a skewed notion of what constitutes “natural.” I think…I came to the topic of vaccination with an ingrained bias, though I’m not sure I would have called it such at the time. I framed it as skepticism, as a lack of trust in the medical and pharmaceutical industries and an assumption that those industries were motivated by profit rather than by an interest in public health and safety. In college, I took a graduate level course that examined the history of medical practice in America. We learned about the Tuskegee syphilis experiment and the intentional vilification of midwives as the push for hospital births grew….


On my own I read about Vioxx and other pharmaceutical mishaps and recalls including thalidomide and what it did to children in Britain. I read about the live polio vaccine causing paralysis. Science doesn’t always get it right the first time, and I felt like vaccines might be another area where the kinks were still being worked out, with children as the guinea pigs.

LC: There was no particular incident. I joined a local mom’s group on Facebook after meeting a few of them in person, and I think that’s where the idea that [vaccines] were poisonous came from.

CA: The thing that actually triggered my doubts about vaccines was that I had gotten into this new-hippie/crunchy lifestyle that was all the rage…in young mothers. What really got me was that they were saying…that vaccines caused autism.


HOW DID YOU GET INVOLVED IN THE ANTI-VACCINE MOVEMENT? TO WHAT EXTENT WERE YOU INVOLVED?

KO: I do not consider myself to have been involved in The Movement. I’m an introvert and not a big joiner or vocal supporter of causes. I tend to just quietly read and think and analyze. Years ago, I hesitatingly posted a couple of mildly anti-vaccine links and comments on Facebook, but that was about the extent of it.

LC: I don’t know that I’d say I was really involved in the movement as far as protesting or picketing or going to organized meet-ups…. But I did share bad articles on the topic on Facebook—pseudoscience explanations of vaccines’ toxicity and anecdotal stories mostly.

CA: I was the prime example of an uneducated person just flocking with the herd. All of my friends were following the trends associated with being crunchy. They read what other people saw on the Internet and they did no research of their own, and neither did I…. Every time I got the chance to share some Internet graphic about the dangers of vaccines with my friend list, oh man did I. I brought it up at dinner, I brought it up with friends, and everywhere I went I was sharing my uneducated beliefs. I was young and easily influenced.


WERE YOU AND YOUR SPOUSE ON THE SAME PAGE REGARDING WHETHER OR NOT TO VACCINATE YOUR CHILDREN?

KO: He…left most of the work and decision-making to me. When the girls were infants and toddlers, he was caring for his elderly father, so he didn’t have a lot of time or energy left at the end of the day. His mom and sisters were concerned that I hadn’t vaccinated the girls, though, and they would question him, which in turn led him to question me. Initially, I was defensive about it, but as time went on and my own doubts began to grow, I considered his opinion in my decision to change course. He mentioned it in the midst of the Disneyland measles outbreak, and a time when I was already questioning my decision, so it was a timing issue as well.


LC: My husband remained skeptical of the anti-vax stuff but let me take care of doctor visits, and it was left up to me. Later, when I came around to the logical side of the topic, then we were in agreement that vaccines are necessary.

CA: The kids’ dad was not into making choices like that. Everything was up to me and, whatever I decided to do, he would stand behind it.


WHEN DID YOU START TO HAVE DOUBTS ABOUT THE CLAIMS BEING MADE BY THE ANTI-VACCINE MOVEMENT?

KO: I don’t think I was ever 100% secure in my position…. I spent a lot of my younger years agonizing over options in various areas of my life, and often ultimately made the passive choice not to do anything. I think that [behavior] was at play when I didn’t vaccinate my children. Suppose I vaccinated my children and one or more of them were later diagnosed with autism spectrum disorder or some other condition that people frequently blame on vaccines? If that happened, then I would always feel some degree of guilt. On the other hand, if my children weren’t vaccinated, then I’d be absolutely certain that vaccines were not the cause of their disorder or condition and my conscience would be clear. If I did vaccinate, there’d be no way for me to know for sure, and I was afraid that I would feel terribly guilty for the rest of my life. What I hadn’t considered fully was the reverse: What would happen and how I would feel if my children contracted a vaccine-preventable disease? Now I see the cognitive dissonance there, but I don’t think I did at the time.

The balance began to tip when several events converged in my mind. Over the course of a few months, the Disneyland measles outbreak made headlines, I had a conversation with a respected colleague who disagreed with my choice not to vaccinate, my husband had questioned me a couple of times about why we hadn’t vaccinated the girls, and my family all contracted rotavirus. I still remember a moment of clarity that completely changed everything…. I had a sudden thought that I couldn’t ignore: What if the people who were against vaccinating, the people whose words and arguments I had relied on to make my decision, were completely wrong? Almost immediately I grabbed my laptop and started looking at pro-vaccine websites and reading the information they contained… And when reading about some anti-vaccine claim or another (such as “The CDC admits vaccines cause autism!!!”), I began carefully following the links to the study or other cited evidence of the headline’s claim. What I began finding concerned me: When I read the cited study, I never could find the smoking gun or evidence that the article writer claimed it contained. Often, I found the exact opposite to be the case.

LC: A friend of mine, who has a boy close in age to my boy, was skeptical of vaccines for a bit. She worked where my husband was finishing his bachelor’s degree and I had some high regard for her. She eventually started talking about how she was duped by the same type of information I was reading and then shared articles that debunked them.

CA: I started having doubts when I had to lie to the school about my religious beliefs when enrolling my daughter in kindergarten…. I am proud of my beliefs and to say that vaccines were against my religion, I felt, was one of the worst ways that you could sin in the eyes of God…. My daughter went to a Christian school and…I looked them right in the eye and lied. Then I saw a video on social media of a baby coughing and hacking because they had contracted a virus that could have been prevented had someone gotten the vaccine. The sound of the mother crying in the background of the video touched my soul and I started thinking, “What if that had been me? What would I do in that moment?” After that, I started to actually do my own research.



DURING YOUR ANTI-VACCINE DAYS, HOW DID YOU RECONCILE PERSONAL CHOICE VERSUS THE CHOICE TO PROTECT THOSE IN THE COMMUNITY WHO COULD SEE HARM FROM DECREASING RATES OF VACCINATION?

KO: I don’t think I ever reconciled that issue. I was aware of the concerns that lowered vaccination rates could lead to an increase in vaccine-preventable disease, and that herd immunity protected people in the community who could not be vaccinated. Ardent anti-vaxxers claim that herd immunity is actually a myth, and that it has never been demonstrated as a scientific fact. They claim that parents should not be compelled to vaccinate their children (or, as they put it, to inject their children full of harmful toxins) in order to protect other people from disease. They also argue that, since vaccines are “harmful and can actually cause health problems” and are not as effective as advertised, the whole argument about herd immunity offering protection to those who can’t be vaccinated is just propaganda.

I also bought into the anti-vaccine idea that improved sanitation and advances in treatment were largely responsible for the decrease in communicable disease…. Clean drinking water, sanitation, improved nutrition, breastfeeding, and advanced medical care are the primary drivers of good health and a reduction in communicable disease. The idea is that an optimized, “uncompromised” immune system can effectively fight off disease if given the ideal conditions and environment.

LC: I wasn’t aware of the consequences. Or rather, I didn’t believe herd immunity was true, and I didn’t really know the other benefits of mass vaccination.

CA: At the time I was told that herd immunity was not actually true and…I believed everything that I read and heard from the…anti-vaccine groups. I told myself that I was making the right choice because I was trying to protect my family and my family was more important than everyone else…. I also was so convinced that the government was out to get me. I didn’t trust them at all. It wasn’t until my Grandma got very sick that I really started doing research on herd immunity because it was dangerous for her to be around people who weren’t vaccinated that could be a carrier. Her immune system was so fragile. I knew that if she contracted one of these things that she probably wouldn’t make it through it. That scared me so much for her and for every other person that can’t get vaccines, including newborn babies. There was a newborn baby in my area not long ago that died from exposure to something that could have been prevented if someone had vaccinated their children. These are just the constant reminders of why we need to increase herd immunity and why we need to vaccinate our children. You can never be too careful, and you need to help take care of the people who can’t take care of themselves. Period.


FROM WITHIN THE MOVEMENT, WERE THERE CERTAIN APPROACHES OR TACTICS THAT WERE ENCOURAGED TO SWAY PEOPLES’ OPINIONS ABOUT VACCINES?

KO: Fear is a powerful motivator, and when I was trying to find information about the safety of vaccines, I came across some pretty scary stories online about children who were allegedly injured by vaccines. We assume that parents know their children deeply, and when a parent claims their child changed drastically and immediately after a series of immunizations, I think our instinct is to believe that parent…. It is hard for a nonmedically trained person to put those testimonials aside and take a doctor’s or drug company’s word for it that vaccines are safe. It is hard not to see…those grieving parents
as up against a Goliath…. Any attempt to question the parent, to ask for some evidence that vaccines were actually the cause, is met with swift and ferocious backlash. The general message is “How dare you question this parent after all they’ve been through!”

Other significant tactics focus on the insistence that even the government and pharmaceutical companies are aware of the dangers of vaccines. Package inserts are a frequent topic. If someone doesn’t know how package inserts work, or what they are legally required to state, it’s not easy to read that long list of possible side effects and not feel concerned about bringing their child in for immunizations. The general idea is that there is a great big conspiracy hiding in plain sight.

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Mar 16, 2020 | Posted by in GENERAL & FAMILY MEDICINE | Comments Off on There and Back Again: How Anti-vaxxers Change Their Minds
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