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

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 to that kind of compounded request.

You're listening to Epidemic, the podcast about the science, public health, and social impacts of the coronavirus pandemic. I'm your host, Dr. Celine Gounder. Growing up, Heather Simpson never thought much about vaccines. She got all the normal ones most kids get.

It was just something that we did. We went, they hurt, you know, we got McDonald's afterwards.

If she ever needed a measles shot or a pertussis shot, she just got one, no questions asked.

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.

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.

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 just felt like I was in survival mode. I just tried not to do the epidural and trying to be as natural as I could.

That's when she saw an ad for a video about vaccines in children.

And so we bought it and we watched it. And I mean, 9 hours of that stuff.

It was daunting.

And I was terrified by the end of it. I was like, well, I'm amazed that I survived my childhood, A, and we will never vaccinate B.

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

The biggest thing that scared me was SIDS.

Sudden Infant Death Syndrome.

It completely freaked me out, but they just seemed so genuine, so caring, so kind, so well-researched. The way they taught, 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.

Heather's head was spinning. She was terrified something would happen to her baby girl.

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

So when her daughter was born, they decided not to get the recommended vaccine for hepatitis B.

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.

It's important to note that 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. 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.

It was almost a tangible fear even thinking about a needle going into my child.

The history of vaccine confidence in the 21st century.

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

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

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.

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.

This is polio, the cruel centuries-old crippler of children.

In the 1950s, seeing children in leg braces or wheelchairs was common. That is, until Dr. Jonas Salk developed an effective vaccine for poliovirus.

The vaccine works! It is safe, effective, and potent. The tests proved it up to 90% effective in preventing paralytic polio. Some day, said Dr. Salk, a vaccine may completely eradicate the menace of polio.

And we used those vaccines to remarkable effect, driving down rates of that disease very, very quickly.

This is Elena Conis.

I'm a historian of medicine and a writer, and I teach at UC Berkeley.

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 reemerge. So states passed laws mandating polio vaccination.

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 U.S. state across the country had fairly consistent laws requiring vaccines for school enrollment.

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 US Senate hearing into the safety of birth control in 1970.

You all take the pill we handed out this morning, everyone has a pill here, then see how you feel about the questions that are 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 problems, 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 testifying in this?

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

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?

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

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?

This led to changes in how vaccines were perceived and tracked. In the 1980s, the US 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.

So that by the early 2000s, we end up having something pretty remarkable of 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 '60s and '70s that had never really truly been answered.

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.

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

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

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 QAnon and different conspiracies like that. And then there's people like me that were just really freaked out and scared.

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

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

The measles costume.

Oh my gosh, so it actually looked like syphilis. Mixed with chickenpox. 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? I mean, nobody else is gonna see this, right? Like probably just some of my friends. And so that's when I was like, ooh, I could be the measles. 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.

Heather had gone viral.

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

We'll find out what happened to Heather after the break. When we left Heather, she had just decided to dress up as the measles for Halloween.

I was trying to think of the least scary thing I could be for Halloween, so I became the measles.

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 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.

This is Rebecca Onion. She's a staff writer for Slate who's reported on the history of vaccines.

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

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.

In the previous 5 years before 1968, there were an annual average of 450,000 reported cases. But then in '68, there were only 22,000. So that's a really good result.

But just a few years later, that progress stalled.

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

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.

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

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

You know, this is well covered in women's magazines and sort of women's media, people talking about, you know, should you conceive this year, or what should you be afraid of, all different sort of ideas about how to protect yourself from this possible outcome.

By 1969, scientists had developed a successful rubella vaccine. But measles was still a big worry for public health leaders. So the measles vaccine piggybacked 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.

So he believed that certain children did not develop autism in its normal course. They developed normally and then regressed. And he believed that that was caused by measles in the gut.

This is Jonathan Berman. He's an assistant professor of basic science at NYIT Comm, Arkansas. We spoke with him in our last episode about early smallpox vaccination mandates.

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

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.

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.

One of the most obvious problems with Wakefield's research right off the bat was that the sample size was really small, just 12 people.

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.

The Andrew Wakefield story is long and complicated, but here are some important takeaways. Soon after the article was published, numerous other studies refuted the alleged connection between autism and the MMR vaccine. 10 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.

It was like describing to me how I should kill myself. I mean, it was really, really bad. So I would kind of have moments where I would kind of shake. Just from freaking out.

And Heather was getting mixed messages within her personal circle.

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 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.

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

I didn't start questioning if I was pro-vax at that point, but I started questioning, like, what I was doing. I was like, well, I feel like this movement has dragged me as a person to the point where I don't like who I am.

She issued an apology, but the real moment of change for Heather came next.

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.

Her friend's a nurse. They started talking about vaccines regularly.

I was defensive at first, for sure.

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

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.

Looking back, Heather says fear was the driving force behind her anti-vax views, but she started to realize other parents had their own fears.

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 kid. 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. And I think with the anti-vaxxers, it gets to an unhealthy fear.

Finally, it was hearing about her friend's fears too that helped her break through.

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." And she talked me through each one of my fears. She kind of tackled everything. Slowly. I mean, it took 2 years, but that sometimes is what it takes.

It took only one video series to turn Heather against vaccines and 2 years to become comfortable with them again.

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. I was like, "Does that make me pro-vax?" And she's like, "Yes." And it all kind of clicked, like, "Oh, wow." I got my flu shot a couple weeks ago, and that was kind of the moment I was like, "Yeah, this is fine." Today, Heather works with Voices for Vaccines.

It's a parent-led organization that provides science-based information about childhood vaccinations.

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.

Heather has some advice for parents worried about vaccinating their kids or themselves in the time of COVID I would say don't read the Facebook posts. Heather's talking about anecdotes people share about vaccines. When Heather recently got her flu shot, she had an experience that easily could 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.

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.

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.

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, it probably would have changed my mind.

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