S1E65: Vaccines and Motherly Love / Heather Simpson, Elena Conis, Rebecca Onion, and Jonathan Berman

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“We easily have never had as high a level of vaccination acceptance as we have now but we’ve asked a lot more of the public. The resistance that we see today is a response, in part, to that compounded request over time.” – Elena Conis

The vast majority of Americans accept vaccines but concerns about the effect vaccines could theoretically have on kids have been some of the oldest and most resilient drivers of vaccine mistrust. At this recording, the COVID vaccines authorized for emergency use have not yet been approved for children but if the United States is to eventually reach herd immunity, children will need to be vaccinated. In this second episode in our series on vaccine confidence, we’ll hear from a mother who went from being an anti-vaxxer to an advocate for vaccines.

This podcast was created by Just Human Productions. We’re powered and distributed by Simplecast. We’re supported, in part, by listeners like you.

Elena Conis: We easily have never had as high a level of vaccination acceptance, but we’ve asked a lot more of the public and, in part, the resistance that we see today is a response to that kind of… compounded request, over time.

Céline Gounder: You’re listening to EPIDEMIC, the podcast about the science, public health, and social impacts of the coronavirus pandemic. I’m your host, Dr. Céline Gounder.

Growing up, Heather Simpson never thought much about vaccines. She got all the normal ones most kids get.

Heather Simpson: it was just something that we did. We went, they hurt, you know, we got McDonald’s afterwards. [laughs]

Céline Gounder: If she ever needed a measles shot or a pertussis shot, she just got one. No questions asked.

Heather Simpson: I just really was not concerned. I just trusted them. It really wasn’t until thinking about having kids came into the picture that I even really thought about it.

Céline Gounder: Now that Heather was pregnant, she was thinking a lot about how to raise her baby in the safest, most natural way. She started researching organic foods. She decided she wanted to give birth without an epidural. But there was a darker side to her concerns.

Heather Simpson: So many decisions were coming at me to be the best mom I could be. And I felt judged by people that were making these natural choices and I, I just felt like I was in survival mode. I was trying not to do the epidural, and just trying to be as natural as I could.

Céline Gounder: That’s when she saw an ad for a video about vaccines and children.

Heather Simpson: And so we bought it, and we watched it, and I mean, nine hours of that stuff. It was, it was daunting, and I was terrified by the end of it. I was like, welp, I’m amazed that I survived my childhood, A; and we will never vaccinate, B.

Céline Gounder: The videos blamed all kinds of disabilities and diseases on vaccines.

Heather Simpson. The biggest thing that scared me was SIDS.

Céline Gounder: Sudden infant death syndrome.

Heather Simpson: It completely freaked me out, but they just seem so genuine. So caring, so kind. So well-researched. The way they talk, sometimes they would even cry, I believe. And so it just seemed like if they’re that genuine, they can’t, I mean, they must believe what they’re saying, and it must be true.

Céline Gounder: Heather’s head was spinning. She was terrified something would happen to her baby girl.

Heather Simpson: I would picture taking her in to get a shot and I would almost hyperventilate.

Céline Gounder: So when her daughter was born… they decided not to get the recommended vaccine for hepatitis B.

Heather Simpson: We declined the Hep B at birth. So that was, that was a big deal. We had to sign something. We had to put it in the birth plan. And even then I was like, what if they take her to the nursery and vaccinate her? So that was our big first step of kind of standing up and not vaccinating.

Céline Gounder: It’s important to note that that vast majority of Americans accept vaccines. But concerns about the effect vaccines could theoretically have on kids have been some of the oldest and most resilient drivers of vaccine mistrust. At this recording, the COVID vaccines authorized for emergency use have not yet been approved for children. But if the United States is to eventually reach herd immunity, children will need to be vaccinated. And that means mothers like Heather will need to be convinced.

In this second episode of our series on vaccine confidence, we’re going to look at how Heather got pulled into the anti-vaccination movement…

Heather Simpson: It was almost a tangible fear, even thinking about a needle going into my child.

Céline Gounder: The history of vaccine confidence in the 21st century…

Elena Conis: Second wave feminism created a kind of set ideas that some began to use to think critically about this new generation of vaccine mandates.

Céline Gounder: And why people with doubts about vaccines are not a lost cause.

Heather Simpson: As an anti-vaxxer in the past, I was just living in fear. And now that I’m not living in fear, it’s just so freeing.

Céline Gounder: Today on EPIDEMIC, moms and vaccine confidence.

Before we can continue Heather’s story, we need to look back. In our last episode, we talked about resistance to smallpox vaccination in the 1800s. These were responses to heavy-handed public health measures that relied on punishment to get people vaccinated against smallpox. By the 1950s, smallpox was rare in the United States. But there was another disease very much on the minds of parents.

Recording: “This is polio, crippler of children” 

Céline Gounder: Polio is an ancient disease. In severe cases, it attacks the nervous system of children and can cause paralysis. In the 1950s, seeing children in leg braces or wheelchairs was common. That is until Dr. Jonas Salk developed an effective vaccine for poliovirus.

Recording: “The vaccine works! It is safe, effective, and potent. The tests prove it’s up to 95% effective at preventing paralytic polio. Some days, says Dr. Salk, may completely eradicate the menace of polio.”

Elena Conis: And we use those vaccines to our markable effect, driving down rates of that disease very, very quickly.

Céline Gounder: This is Elena Conis.

Elena Conis: I’m a historian of medicine and a writer, and I teach at UC Berkeley.

Céline Gounder: Elena studies the history of vaccines and opposition to them. The polio vaccine was eagerly accepted by the public after its announcement in 1953. But after years of declining cases, pockets of polio started to re-emerge. So states passed laws mandating polio vaccination.

Elena Conis: This was the beginning of a set of laws passed across the US in the 1960s that introduced new mandates that were focused expressly on children. The result was that, by the end of the 1970s, every US state across the country had fairly consistent laws requiring vaccines for school enrollment.

Céline Gounder: But even as new vaccines were developed to protect children from disease, public trust in science and medicine was starting to fray. Rachel Carson’s Silent Spring came out in 1962, warning the public about the dangers of pesticides. Sudden nuclear attack loomed during the Cold War. The science that promised to make life better… started to sound like… it was actually harming us. And women’s health was part of this too. The development of oral contraceptives in the 1960s was a major victory for some feminists. But early versions of the pill sometimes caused serious side-effects, including an increased risk of breast cancer. Note that modern, low-dose birth control pills are much safer in terms of breast cancer, and actually reduce the risk for ovarian cancer and endometrial cancer. Early clinical trials for birth control pills did not get the consent of the women it was tested on. So activists interrupted a U.S. Senate hearing into the safety of birth control in 1970.

Recording: “We handed out pills to everyone here this morning. Then see how you feel about the questions being asked. When you have one of those pills circulating through your body.”

“Not only were we not told of the dangers of the pill, when we came in with side-effects, we were told to go on using the pill. 

“Are you objecting to the fact that there are no women on this panel?

“Yes, we are objecting to the fact that there are no women testifying and that there are no women on the panel.” 

Elena Conis: This included some women who said, “hold on – if we’re supposed to be questioning authority, if we’re supposed to be questioning the male medical profession, then shouldn’t we be asking these same questions about our children, when we go to the pediatrician, shouldn’t we say, wait, what’s in that vaccine, what are the side-effects? Why do I need it?

Céline Gounder: These concerns were coming from across a wide swath of American life.

Elena Conis: I want to emphasize this wasn’t just feminism. There were ideas coming out of the disability rights movement, the civil rights movement, the environmental movement, the patients’ rights movement that encouraged people to kind of look at these vaccines that were now being used in a compulsory way and say, “Hold on, wait. Can we ask some questions about these and can we look at their ingredients and can we have some collective conversations.”

Céline Gounder: This led to changes in how vaccines were perceived and tracked. In the 1980s, the U.S. federal government created the National Vaccine Injury Compensation Program. This provides financial settlements to those very persons who suffer severe reactions to vaccines. Systems were also developed to track and record reactions to vaccines.

Elena Conis: So that by the early 2000s, we end up having something pretty remarkable. Um, a fairly long list of vaccinations required for children, a fairly long list of those vaccinations accepted, but also a set of critiques and questions about vaccination from the sixties and seventies that had never really truly been answered.

Céline Gounder: This was the world Heather found herself in as a new mother. This feeling of not knowing what to do led Heather to look for advice. So, she turned to the same platforms a lot of people do… social media groups.

Heather Simpson: The average parent would just get on these groups, asking other anti-vax parents for medical advice. And, um, a lot of the times it wasn’t, about vaccines. It was like, “Hey, my child has a 105F fever. What should I do?”

Céline Gounder: The more time Heather spent in these groups, she started to recognize some of the personalities in the  anti-vaccination community.

Heather Simpson: A lot of them are ex-vaxxers, which just means, like, they believe the vaccine caused whatever condition their child has, and then they stopped vaccinating. But another chunk of them are conspiracy theorists. So a lot of anti-vaxxers also are flat earthers and believe in like, Q Anonymous, and different conspiracies like that. Um, and then there’s people like me that were just really freaked out and scared.

Céline Gounder: Heather started to build a following on social media around her anti-vaccination views.

Heather Simpson: I started a page that I dedicated to, um, taking apart studies and trying to dissect them. I was trying really hard to debate people. So I, I did attention grabs, like the measles costume was obviously an attention grab.

Céline Gounder: The measles costume.

Heather Simpson: Oh my gosh. So, it actually looked like syphilis mixed with chicken pox. [laughs] It wasn’t even the measles – oh my gosh. I just thought what is a good, Halloween costume that my friends will get a kick out of it. I mean, nobody else is gonna see this, right. Like, probably just some of my friends. And so that’s when I was like, Oh, I could be the measles. And anyway, I posted it. And by that night it was getting like thousands of shares. I woke up the next day and it was getting shared like 50 times a minute. 

Céline Gounder: Heather had gone viral.

Heather Simpson: And it had been shared on Reddit and blown up. And I was like, Oh my gosh, this was not supposed to happen.

Céline Gounder: We’ll find out what happened to Heather… after the break.

* * *

Céline Gounder: When we left Heather, she had just decided to dress up as the measles for Halloween.

Heather Simpson: I was trying to think of the least scary thing I could be for Halloween. So I became the measles

Céline Gounder: Measles is one of the most contagious infectious diseases known to man. In severe cases, it can cause pneumonia, blindness, and brain infections. So, why did Heather think the measles wasn’t scary? The first measles vaccine was developed around the same time as the polio vaccine. But —

Rebecca Onion: Because people didn’t consider measles to be as big of a problem as polio, a lot of the tactics that they were using didn’t have the same resonance.

Céline Gounder: This is Rebecca Onion. She’s a staff writer for Slate who’s reported on the history of vaccines.

Rebecca Onion: Because it was so contagious because so many people got it. There was. Uh, there was a sort of a probability that you might not know someone who had a bad reaction; that you might know a lot of kids who came through it okay.

Céline Gounder: But from a population view, measles was a concern. So, coming off the success of the polio vaccine, the CDC set a big goal. They wanted to eliminate measles in the United States. The campaign got off to a good start.

Rebecca Onion: In the previous five years before 1968, there was an annual average of 450,000 reported cases, but then in 68 there were only 22,000. So that’s a really good result.

Céline Gounder: But just a few years later, that progress stalled.

Rebecca Onion: So in ’71, there was a survey showing only a 57.2% national rate of measles immunization, which isn’t great.

Céline Gounder: If people weren’t concerned with measles, they were worried about rubella. In 1964, about 20,000 children were born to mothers who got rubella during their pregnancies. These babies had congenital rubella syndrome.

Rebecca Onion: The results of that are deafness, blindness, intellectual disabilities, heart defects, things that, you know, were very visible and obvious to people.

Céline Gounder: Fear of another outbreak set off the race for a rubella vaccine.

Rebecca Onion: You know, this is well covered in women’s magazines and women’s media. People talking about should you conceive this year or all different sort of ideas about how to protect yourself from this possible outcome.

Céline Gounder: By 1969, scientists had developed a successful rubella vaccine. But measles was still a big worry for public health leaders. So, the measles vaccine piggy-backed on the demand for the rubella vaccine. In 1971, they were combined into one vaccine that protected against measles, mumps, and rubella. It’s commonly known as the MMR vaccine. The MMR vaccine is safe and commonly required for kids to attend school. But in the 1990s, the vaccine would become a lightning rod after a controversial paper was published by a man named Andrew Wakefield.

Jonathan Berman: So he believed that certain children did not develop autism in its normal course, [he believed] they developed normally and then regressed. And he believed that that was caused by measles in the gut.

Céline Gounder: This is Jonathan Berman. He’s an assistant Professor of Basic Science at NYIT COM Arkansas. We spoke with him in our last episode about early smallpox vaccination mandates.

Jonathan Berman: The source of that measles was from, either attenuated or inactivated measles in a vaccine that was being administered to those children.

Céline Gounder: In 1998, Wakefield and several other authors published an article in The Lancet medical journal with his hypothesis that the MMR vaccine caused autism in children. To be clear, this hypothesis was wrong.

Jonathan Berman: And at the same time Lancet and BMJ, another respected journal, published articles that kind of tried to contextualize it, and say, well, a lot more needs to be done before we say this is true.

Céline Gounder: One of the most obvious problems with Wakefield’s research… right off the bat… was that the sample size was really small. Just twelve people.

Jonathan Berman: Wakefield had a press conference. And he sort of surprised the other people in the conference by saying measles vaccine is dangerous. No one should get it. And that’s the story that got picked up in the media.

Céline Gounder: The Andrew Wakefield story is long and complicated but here are some of the important takeaways. Soon after the article was published, numerous other studies refuted the alleged connection between autism and the MMR vaccine. Ten of the 12 authors of the Lancet article retracted their interpretation of the initial results. They said, quote, “no causal link was established between MMR vaccine and autism.” The investigative journalist Brian Deer would later reveal that Wakefield and his co-authors falsified their results, and were motivated by financial gain.

The Lancet fully retracted the article in 2010. Wakefield lost his license to practice medicine in the United Kingdom that same year. But the bogus connection between autism and the MMR vaccine is a persistent myth. And the same one that led Heather to see measles as no big deal.

After images of her costume went viral on the internet, Heather started getting hate mail.

Heather Simpson: It was like, describing to me how I should kill myself. It was really, really bad. So I would kind of have moments where I would kind of shake just from freaking out.

Céline Gounder: And Heather was getting mixed messages within her personal circle.

Heather Simpson: And then I would have my friends, you know, praising me and telling me what I did was brave. And then I’d have other friends saying that was not very godly of you, you need to issue an in a public apology. And so I just had so many things coming at me. I, it felt kind of overwhelming a lot of the time.

Céline Gounder: The unwanted attention, threats, and mixed messages started to make Heather doubt herself.

Heather Simpson: I didn’t start questioning if I was pro-vaxx at that point, but I started questioning, like, what I was doing. I was, like, “Oh, I feel like this movement has dragged me as a person to the point where I don’t like who I am.”

Céline Gounder: She issued an apology. But the real moment of change for Heather came next.

Heather Simpson: I had a friend message me about her friend whose child died of the measles, and it just kind of hit me, like, wow. What I did was really crappy, like this is not a joke.

Céline Gounder: Her friend’s a nurse. They started talking about vaccines regularly.

Heather Simpson: I was defensive at first for sure.

Céline Gounder: But Heather says she was trying to listen with an open mind.

Heather Simpson: In some ways I was hoping I was wrong, because it would be so nice to just to be a normal American citizen and vaccinate on schedule and be part of the herd immunity and everything like that. So sometimes I was just hoping, I was wrong, and I was definitely open to it. But again, that fear was just so in my brain and my heart and just, I could not escape it.

Céline Gounder: Looking back, Heather says fear was the driving force behind her anti-vaxx views. But she started to realize other parents had their own fears.

Heather Simpson: I talked to somebody, um, during all this. And she said that she had the opposite fear. She didn’t want to take her son out until he was vaccinated. So she had like an equal amount of fear, but for vaccine preventable diseases. I think pro-vaxxers and anti-vaxxers are both just trying to protect their kids. A lot of that stems from a place of fear on both sides. You know, you don’t want your kid to get measles. I mean, it’s a healthy fear of vaccine-preventable diseases. I think with the anti-vaxxers it’s, it gets to an unhealthy fear.

Céline Gounder: Finally, it was hearing about her friend’s fears, too, that helped her breakthrough.

Heather Simpson: What she finally said is: I am nervous taking my child to get vaccines. Every parent that I know is nervous, but your child is going to be fine, like, and she talked me through each one of my fears. She kind of tackled everything. Slowly — I mean, it took two years. That, sometimes, is what it takes.

Céline Gounder: It only took one video series to turn Heather against vaccines… and two years to become comfortable with them again.

Heather Simpson: I finally was talking to my friend, and I said, “Hey. Even though I have these like fears in the back of my head, I believe in vaccines. Like I want to vaccinate, um, does that make me pro-vaxx?” And she’s like, “Yes.” And it all kinda clicked like, “Oh wow.” And I got my flu shot a couple of weeks ago, and that was kind of the moment I was like, yeah, this is fine.

Céline Gounder: Today, Heather works with Voices for Vaccines. It’s a parent-led organization that provides science-based information about childhood vaccinations.

Heather Simpson: I just realized how important it is to kind of make up for all the damage that I did. I feel like I just promoted so much damage, and I don’t know if I’ll ever make up for that, but that’s kind of what I’m trying to do now.

Céline Gounder: Heather has some advice for parents worried about vaccinating their kids or themselves in the time of COVID.

Heather Simpson: I would say don’t read the Facebook posts.

Céline Gounder: Heather’s talking about anecdotes people share about vaccines. When Heather recently got her flu shot, she had an experience that could easily have been mistaken for an adverse vaccine reaction. She was going to get her shot one morning, but decided to cancel. She didn’t feel well. Later that day she started spitting up blood. She had a severe case of esophagitis.

Heather Simpson: Had I gotten my flu shot that morning, you can bet that the spitting up blood would have been blamed on the shot. And so when you read these stories on Facebook, you might link the COVID shot to what happened.

Céline Gounder: Heather also feels that more could be done to reach people who are on the fence about vaccines. But those parents’ concerns need to be taken seriously.

Heather Simpson: I kind of feel that doctors maybe feel that anti-vaxxers are kind of past the point of no return. And so I don’t feel like they give enough time because they feel like it’s just going to be pointless and it’s actually not pointless at all. It probably would have changed my mind.

CREDITS

EPIDEMIC is brought to you by Just Human Productions. We’re funded in part by listeners like you. We’re powered and distributed by Simplecast.

Today’s episode was produced by Zach Dyer, Julie Levey, and me. Our music is by the Blue Dot Sessions. Our Production and Research Associate is Temitayo Fagbenle. Our interns are Annabel Chen, Bryan Chen, Julie Levey, and Sophie Varma.

Special thanks to Karen Ernst and Renee Diresta.

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And if you like the storytelling you hear on EPIDEMIC, check out our sister podcast, AMERICAN DIAGNOSIS. On AMERICAN DIAGNOSIS, we cover some of the biggest public health challenges affecting the nation today. Past seasons covered topics like youth and mental health; the opioid overdose crisis; and gun violence in America.

I’m Dr. Celine Gounder. Thanks for listening to EPIDEMIC.

END

Guests
Elena Conis Elena Conis
Heather Simpson Heather Simpson
Jonathan Berman Jonathan Berman
Rebecca Onion Rebecca Onion
Host
Dr. Celine Gounder Dr. Celine Gounder