Seth Mnookin: How the Vaccine War Has Changed

March 24, 2015
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Mnookin is the author of The Panic Virus: A True Story of Medicine, Science and Fear and associate director of the graduate program in science writing at MIT. This is the edited transcript of an interview conducted on Feb. 18, 2015.

Why did you write The Panic Virus?

I started work on The Panic Virus not long after my wife and I had got married. We moved from Manhattan to Brooklyn and started doing adult things like go to dinner parties and socialize with other couples, and we both noticed that this subject of vaccine safety and efficacy kept coming up in conversations. We were not parents or expectant parents at the time.

But what struck both of us was that when we asked our friends how they were making these decisions, a lot of them said that essentially they were going on their intuition. They weren’t deciding based on a doctor’s recommendations or based on scientific literature. And that really surprised me. …

At the time, I actually didn’t know which side in this debate was right. As someone who’s been a journalist for a long time, the idea that there was some big conspiracy was kind of appealing to me in terms of the story. So when I started looking into it, I was essentially coming at it with no background and no preconceptions. And what I thought would be maybe a yearlong project I guess now is seven years and counting. …

So characterize your Brooklyn friends. Would they have fit into any category of types who would not vaccinate?

The friends that I was spending time with and that were having these conversations about vaccines tended to look a lot like me. They might not have been journalists; they might have been lawyers or computer programmers, people in advertising, people in tech, you know, usually in their 30s, maybe early 40s, tended to be well educated, some graduate school, some of the college graduates, but were essentially my peer group, not only in age but in occupation and a lot of other things. …

I knew obviously that there were scientific debates in which people said, “Well, I don’t care what the evidence is; I don’t believe that humans are contributing to climate change,” or, “I don’t believe in evolution.” But I also I guess had some biases about that and assumed that people who thought that way were not people that I knew. It was some other group of people that lived somewhere else. …

So one of the questions I wanted to get into when I started work on the book was really just, what is the nature of truth? How do we decide, as individuals, as a society, what qualifies as truth? Is it what experts tell us? Is it what the government tells us? Is it what our friends tell us? Or is it what we feel in our gut? …

Why is that essential question about what is the truth, why does that translate so hard into the vaccine debate?

I think one of the reasons that the issue of vaccines has been such a difficult question for parents and for people is because it gets to some of the most primal and basic decisions that we need to make, and that’s, how are we going to care for our children? …

I think that, combined with the fact that we also are living in a time in which there are a lot of factors that make us feel powerless, have sort of combined to make the vaccine debate this one area where people have the illusion of control. …

[That’s] combined with the fact that vaccines really have been a victim of their own success. Parents in my generation don’t know kids who grew up in iron lungs. You know don’t know kids that were blinded by rubella, haven’t had experience with kids spending weeks in intensive care because of measles. …

Yet here we are seeing outbreaks. Talk about what has changed about the vaccine war in the last five years.

Right. There have been a couple of big developments surrounding the debates and the vaccine wars, essentially, over the last four or five years.

Probably the biggest is that this paper by Andrew Wakefield that was really kind of the foundational paper of a lot of the anti-vaccine sentiment that still is going on today, that purported to link the measles, mumps, and rubella (MMR) vaccine to a gut disorder, and then that gut disorder to something like autism — that paper has been retracted. It was found to be partially fraudulent. Andrew Wakefield has lost his medical license.

So one would think — and I actually did think when all this was happening — that that was going to kind of close the door on this. … That has obviously not turned out to be the case at all. People are still concerned about the MMR. Sometimes they express that in different ways than specifically talking about autism.

But I think what we’ve seen and what we’ve learned in the last five years is that once you scare someone, you can’t just unscare them. You can’t just say, “OK, actually, never mind; wipe that from your from your memory,” because as humans, once you’ve introduced the idea that something bad could happen, we are naturally going to think about that possible bad thing that could happen. So I think that’s been a big shift.

Another big shift in the vaccine wars over the past five years is that I think the media coverage today is much more responsible than it was five years ago, definitely 10 years ago. Even then there was an enormous amount of scientific evidence on the side of vaccines being safe, having absolutely no connection with autism and really no evidence to the contrary. You had a lot of stories that express this as an on-the-one-hand/on-the-other-hand debate. I think those stories did a huge, huge disservice to public health, and you really don’t see that anymore.

That is what I’m interested in. It seems the climate has really changed both for the anti-vaccine camp and pro-vaccine camp. Five years ago there was a greater sense of pro-vaccine sentiment acknowledging the other side as a reasonable, other way of looking at. Now that’s different.

When I started working on this in 2008, what I encountered was parents who were skeptical of vaccines, were oftentimes very vocal about that. And the vast majority — the 90-plus percent of parents who do vaccinate — were not vocal about that. They sort of felt like it wasn’t their place to tell other parents what they thought they should be doing. …

“What we’ve learned in the last five years is that once you scare someone, you can’t just unscare them.”

That’s something that has definitely changed over the past couple of years, I think in large part because of the outbreaks that we’ve been seeing, the measles outbreaks, not just in 2015. For the last several years we’ve had many, many more measles cases than we had been having. Those numbers are so striking to people in public health because measles had been eliminated in the United States. We’ve had pertussis [whooping cough] outbreaks that have swept across the country. We’ve had deaths from pertussis.

So I think parents now who are vaccinating their children also understand that parents who don’t vaccinate are having an impact on the rest of society. Even if your own child is vaccinated, there are public health costs associated with these outbreaks, pretty significant public health costs. …

Study after study has not been able to link vaccines with autism. Do you get the sense that the pro-vaccine camp has been able to breathe a sigh of relief and say, “Now I have proof that this isn’t real”?

I think scientific researchers in the public health community have felt confident that there was no link between vaccines and autism for over a decade. I think one of the tragedies of how much attention was paid to that is that you had an enormous amount of research money that was wasted chasing after an answer that we already had. …

One of the different things in communicating the fact that there is no link is that science and English are not really the same language. So when a scientist says, “We have no evidence that there’s a link between vaccines and autism,” what they’re really saying is, “We are as positive as someone can humanly be that there’s no link.”

One thing that I sometimes do when I’m talking to parents is say, “I’m as confident that there’s no link between vaccines and autism as I am that if I was going to walk off this building that I would not be able to fly.” I can’t say for 100 percent that I won’t be able to fly because I haven’t lived through the future, but based on all of the evidence in the past, I’m pretty sure that I’m going to plummet right to the ground if I do that. And that’s what scientists are not saying, so when they speak in a language that make sense to their peers, it’s oftentimes not a language that makes sense to the public. …

So now that we’ve gone through understanding science, the language of science, still Andrew Wakefield’s study endures. It’s still having an impact. What is the psychology of the group of people who are sticking to that and really almost feeling emboldened even more so behind him, that maybe he’s been a fallen angel or a martyr?

I think there are a couple of really interesting things about the Wakefield study that came out in 1998. One point that I try and make is that that initial study was 12 children. It’s ridiculous that you would make conclusions based on a 12-child study. Oftentimes I’ll walk into a room and will count out the first 12 people I see and say, “Based on that, I’m going to conclude that 100 percent of the population is over the age of 35, and 0 percent of the population has red hair,” because that happened to be true for those 12 people. …

Even if the Wakefield study had held up, even if it had turned out that there had not been fraudulent data, you would never base conclusions on a study that only involved 12 people. The most that that would indicate is that that’s a subject that deserves further review.

With the Wakefield study, we also then found out that he was being paid by a lawyer who had been working with parents who believe their children were damaged by vaccines. … They were led directly to him by this lawyer.

Some of the data sets turned out to be problematic/fraudulent. Andrew Wakefield turned out to have taken out a patent for a single-dose measles vaccine — which was exactly what parents would be asking for if they believed that the MMR was dangerous — just before his paper was published, something that he never disclosed.

So you have this enormous amount of information all showing why this paper should be ignored. And yet, obviously, it’s not. Obviously there are people that still put a lot of faith in the Wakefield paper.

I think there are a couple of reasons for that. One is it’s a characteristic that you see a lot with conspiracy theories. When you start to believe in a conspiracy theory, any evidence to the contrary only serves as further proof the conspiracy is correct. If the conspiracy wasn’t correct, then why would all of these people be trying to prove it wrong? So you have that phenomenon.

But I think that the portion of people who continue to fervently believe specifically in the Wakefield paper is actually a very tiny, tiny percentage of people who are anxious about vaccines. I think the effect of the Wakefield paper overall has been more that it has introduced this strain of doubt about the MMR vaccine into the population. That doubt has infected people, and that’s something that we’ve seen in the vaccine debate again and again and again.

It’s something that you see in politics. If one candidate is able to get his or her opponent to deny an allegation — and even if there’s no evidence — the mere fact that that person is vocalizing it and denying it raises the possibility that it’s true in people’s minds.

That’s what you see with vaccines. Every time someone in public health or a doctor or a scientist has to say, “There is no evidence whatsoever that there’s any link between vaccines and autism,” part of what that does is introduce the idea that there might be a link between vaccines and autism. …

The types of people who don’t vaccinate, who are they?

It’s been hard to break down the people who are either delaying or skipping some vaccines into one group.

You have people whose primary concern is autism. That is definitely one contingent. You have really staunch libertarians who don’t believe in any government involvement in people’s lives. You have what one epidemiologist referred to in a conversation with me as the “Whole Foods contingent,” people who self-identify as environmentally conscious, prefer all-natural ingredients, regardless of whether what’s in those natural products is good or not. …

And then you actually have the majority of people who are worried about vaccines that don’t fall into one of these groups, who have kind of picked up fears and anxieties about vaccines almost by osmosis. For 15 years there have been stories in the press, there have been conversations on playgrounds, there have been discussions in parenting groups about vaccines and vaccine safety and vaccine efficacy. And those fears, even if you don’t fall into one of these camps, just kind of permeate everything around you.

You need to also combine that with the fact that it’s really not fun to bring your kid in to get a shot. I hate getting shots. I remember the first time I was with my son when he was getting one of his early vaccines, he got the shot and started bawling. … That’s not fun for any parent, and so all you need is kind of the seed of something to say like, “Maybe this isn’t the best idea,” and you’re going to have some people who say: “OK, maybe this isn’t the best idea. If I can skip that I will.”

… Jenny McCarthy wasn’t just leading the anti-vaccine movement, she was at the pinnacle of her career. What do you know about her voice now in the vaccine debate?

One that has definitely changed over the last four or five years in the vaccine debate is specifically Jenny McCarthy’s role in that debate. This was something that fairly recently really defined who she was in the public eye. She had a number of appearances on Oprah that got a lot of attention. She ended up signing a development deal with Oprah.

What has happened more recently is her association with these really rabid anti-vaccine views seems to be having a potential negative effect on her career. I think that’s fascinating and shows some of the shift that’s gone on in public. She did not last on The View for very long. There was never someone specifically saying that was because of her anti-vaccine views, but certainly one thing that came up a lot was that that was a part of her past and a part of [what] she stood for that made people uncomfortable. …

It’s something that she very rarely now discusses in public. She’s moved on to other topics. So I think that’s a really interesting shift that’s happened.

But again, I think the impact and the influence that she had on this debate remains. She really gave it a very articulate, personable face, a face of a mother trying to do what she thought was best for her child.

And I think something else that is very unfortunate about how Jenny McCarthy was represented and the role she played is that a lot of people in the medical community and in public health sort of couldn’t believe that here was this woman — and doctors will inevitably refer to her as “this Playboy Playmate,” this woman who was paid to take off her clothes, and you parents are listening to her more than me.

I think what doctors and people in public health didn’t realize is that to a parent, that sounds like some person up on Mount Olympus saying: “You stupid parent, you have no idea what you’re doing. You should listen to me.” That sounded like someone denigrating a parent.

The point I have always tried to make is that Jenny McCarthy is very smart, very articulate, very good with getting the message across, and to assume that she’s not I think was a big mistake on the part of public health.

Now she is the current president of Generation Rescue. On their website it’s “Educate before you vaccinate.” How do you describe what that is?

… We’ve seen even in their rhetoric a shift from essentially “Vaccines are horrible,” to “Educate before you vaccinate,” to this sort of attempt to split it down the middle, which to my mind is still an anti-vaccine message, because the implication of “Educate before you vaccinate” is that the message that’s out there is an inaccurate one, and, as we know, that’s not true. But she has definitely made this less a part of her public persona and who she is and how she’s represented.

Years ago, doctors were predicting that outbreaks of disease would happen. Now we are seeing whooping cough and measles. What do you think is the trajectory? Where do we stand now?

I think we’re in a very critical time in all of this. There have been hundreds of measles infections this year, really a striking number, a vast majority of them coming out of this Disneyland outbreak. But still, in a nation of 300 and something million, that’s a very small number of people.

What makes the public health community so nervous is that you do have these communities where enough people are not vaccinated so that tomorrow you could have 30, 40, 50 new infections. Even if none of those 30, 40, 50 kids ends up hospitalized for an extended amount of time, the most recent study that I’ve seen indicated that it costs more than $10,000 per case of measles to contain it, because it is the most infectious microbe known to humankind. The efforts to contain it, the efforts to track down everyone that the infected person has come in contact with, are just incredibly, incredibly expensive. So even though we’re only seeing hundreds of cases, that can have a pretty significant impact on public health.

But I do think we are at this point where it’s possible that education and awareness, stemming partially from what’s happened, could mean that the 90-plus percent of parents that are vaccinating now rises up to 93 percent. … That, I think, is sort of a best-case scenario.

A worst case scenario is we look overseas at what happened in France, where they had several dozens of cases a couple of years ago and now have tens of thousands of cases. And that’s tens of thousands of cases in a country essentially the size of Texas. So you extrapolate that out to the U.S., and you start to get pretty big numbers.

That’s an absolute worst case scenario. I don’t see that happening in the United States because of school-age vaccination requirements and other factors, but it’s certainly not out of the realm of possibility.

So that brings me to exemption laws. … Can you describe how these laws work around the country and what you know about how they’ve changed or been used in ways that amount to lowering immunities?

So in the country as a whole, you have several different types of exemptions. You have medical exemptions, which every state has, which no one, I think, is arguing that you should not have. Doctors think there should be medical exemptions. The public health community thinks there should be medical exemptions.

Who would get a medical exemption?

Medical exemptions could be applicable for someone with a not fully developed immune system, someone who’s immune-compromised. …

You also could have situations where the medical recommendation is to delay a vaccine, ranging from something as simple as a child is sick at that time and they don’t want to give them a shot right then to there’s some larger issue that will resolve over time and they’re going to wait until that issue does resolve. So I think medical exemptions are not going away; no one thinks they should go away. …

There are essentially two types of non-medical exemptions in this country: religious exemptions and personal-belief exemptions. They’re sometimes also called philosophical exemptions.

The way those two types of exemptions are administered around the country vary widely. In some places, you essentially just need to say, “It is my personal belief that I should not vaccinate my child,” and sign a piece of paper, and that’s that. In some states, you need to have a conversation with a medical professional and sign a piece of paper saying that you understand the risks of not vaccinating and those risks include X, Y and Z. …

Some states are looking at tightening up the mandates and wiping personal-belief exemptions from the list at all.

I think another illustration of how the vaccine debate has kind of ebbed and flowed over the past couple of years is that right now, you’re seeing a lot of legislation being introduced that would tighten up exemptions or get rid of personal-belief exemptions. And again, I think that’s because you have a larger portion of the public understanding what the risks are of having a large number of non-vaccinating people in their community.

What you saw a couple of years ago were when there were new laws introduced about exemptions, oftentimes it was because you had anti-vaccine forces who were kind of rallying their troops and sending a lot of letters.

Right now, you’re seeing the opposite. You’re seeing legislators who are aware of the risks. You are seeing constituents who are saying: “I don’t want to live in a school district where there’s an incredible likelihood of a measles outbreak. I don’t want to be in a place where, if there’s a child with leukemia, he or she needs to fear for his life because we have 30 percent of kids who aren’t vaccinated in this community.”

I think even in the way this has played out on a national stage politically over the last couple of weeks, we see this ebb and flow. You had [Gov.] Chris Christie [R-N.J.] and [Sen.] Rand Paul [R-Ky.] come out and say, “Well, this should be an issue of personal choice,” or, “We have to balance that.” And they were very quickly criticized by — you know, it’s probably the only time Barack Obama and [Sen.] Marco Rubio [R-Fla.] have essentially been in lockstep with each other.

I think they underestimated the mood of people who are sick and tired of dealing with the impact of this very small minority of people who are not vaccinating, and people who are very frustrated with the impact that that small number of people can have on all sorts of public health issues. …

[Some parents have said] this is a First Amendment issue; this is parental choice; this is freedom of religion or expression. Just in terms of voters, how will politicians process this issue to win votes? …

There are parents who try and frame the vaccine question as a First Amendment issue, as a right to express themselves the way that they want. That’s a ridiculous argument. There are all sorts of behaviors that impact public health that we do not have a First Amendment right to. I do not have a First Amendment right to drive drunk, even though I may want to express myself that way. I do not have a First Amendment right to take my infant child and put him in a car without a car seat and without a seat belt, even though I may want to express myself that way.

So this is not some infringement on First Amendment rights by any stretch of the imagination. Protecting its citizens is one of the most fundamental jobs that a government has, and we have all sorts of laws and regulations aimed to do exactly that. …

[How has the understanding of herd immunity changed in recent years?]

One way I think this discussion has changed is that when there was talk of herd immunity four or five years ago, … the need to protect the small number of people who can’t get vaccinated against vaccine-preventable diseases seemed like an entirely hypothetical situation when vaccine-preventable diseases weren’t in the news and weren’t around.

I think what we’re seeing now with these outbreaks with communities with low-vaccine uptake, and with the children who are immune-compromised in those communities is that not having herd immunity in an area has really, really serious repercussions. …

At the end of your book, you get quite sympathetic for the parents of autistic children. [What have they endured?]

I think one of the big tragedies, and a tragedy that doesn’t get as much attention as it should [have] in the last 10 or 15 years of the vaccine wars, is the extent to which the autism community has just been done a horrible disservice. We don’t know nearly as much as we should about autism, and there have been just untold amounts of research dollars essentially poured down the drain because of this insistence of again and again going after this illusion that there was some connection between vaccines and autism. All of that was research money that could have been spent on projects that actually needed to be done.

Another huge tragedy is that in this country in 2015, families with autism very often don’t get the support that they need or deserve, and unfortunately now there’s this incredibly charged situation where you have researchers who are afraid to look into questions having to do with autism because they don’t want to all of a sudden be in the crosshairs of the most fervent anti-vaccine camps. …

Autism groups—Generation Rescue—called for a study to look for prevalence of autism among the two groups. Why hasn’t that happened?

There are some groups like Generation Rescue, which very vocally have been calling for a study of vaccinated versus unvaccinated children.

“A single person infected with [measles] can have implications that are going to go on for months for hundreds of people.”

There are a couple of reasons why you can’t do that. We know that vaccines save lives. So you can’t do a traditional study where you take a group of people and say, half of them we’re going to give vaccines to and half we’ll give a placebo to, because then you’re putting the half that you’re giving the placebo to at risk of very serious diseases.

The other way you could potentially do a vaccinated versus unvaccinated study is a retrospective look at children who weren’t vaccinated and compare them to children who were vaccinated. Unfortunately, there, you’re dealing with skewed samples, because the people who are not vaccinating are not representative of the population as a whole. When you have less than 10 percent of the country not vaccinating, you’re going to find ways in which that group skews whatever results you’re going to have.

On top of that, another reason why it both doesn’t make sense and is arguably unethical to [conduct] a vaccinated versus unvaccinated study is because we actually have these studies. We have retrospective studies on millions of children, comparing children who got the MMR vaccine to children who didn’t get the MMR vaccine, children who had thimerosal-containing vaccines compared to children who didn’t have thimerosal-containing vaccines. And every one of these studies has said the same thing. At a certain point you have to say — and I think we’re long, long past that point — that question has been asked and answered. We’re not going to put kids at risk and we’re not going to waste money doing it again, because you know a group like Generation Rescue has shown that it will not be satisfied with the result unless the result says what they want it to say.

There have been people involved with Generation Rescue and with some of these other anti-vaccine groups that have helped to design studies, and then when the study came out and did not have the results that they wanted, they disavowed it. If you’re at the point where you’re letting someone design a study and they still then disavow the results, I think it’s clear that looking into this more is not going to be the answer for placating those people.

Does the vaccine story seem fated to wax and wane forever?

If you look throughout history, there have been anti-vaccine movements and anti-vaccine sentiment for all sorts of different reasons.

One thing that you see pretty consistently is that when a disease is endemic in a society, there’s not a lot of anti-vaccine sentiment. And when a disease kind of disappears from both people’s consciousness and from that society, that’s when you start to get these anti-vaccine concerns. …

When the polio vaccine was introduced in this country, there was actually a batch of tainted vaccines that paralyzed some people and killed some people. That did not completely sidetrack the polio vaccination efforts because everyone in the country knew what a concern polio was. Kids knew that they weren’t allowed to go swimming. They saw their neighbors in iron lungs. So even when there was real cause to be concerned, the public health organization and the doctors were able to get that effort back on track. …

Can you talk more about the way that personal-belief exemptions or any nonmedical vaccine exemptions function around the country, how they’re implemented and what you’ve seen as changes in the last few years either to loosen or tighten them and how that’s playing out? …

… One thing that’s been very interesting over the last couple of years is that there have been legislative efforts to make personal-belief exemptions more difficult to obtain. … I think one thing that shows is that you have more politicians believing that it is to their benefit to tighten up these personal-belief exemptions. They obviously are all saying that it’s for public health reasons, and I believe that, but if it was for public health reasons and it was going to get them thrown out of office, I don’t think you would see these efforts being introduced.

And so I think that the fact that you see pediatric offices refusing to accept children who won’t vaccinate are all indicative of how sentiment is really shifting, again, because if pediatric offices couldn’t get patients if they were refusing to allow unvaccinated kids in there, they wouldn’t be doing it. Instead, they’re finding the exact opposite.

There are more and more parents who specifically want to be in a pediatric practice where they know that the kid next to them isn’t going to be infected with measles or isn’t going to have pertussis. So I think when you look around the country and [look at] what’s going on on a community level, what’s going on on a county level and on a state level, you see a lot of these different efforts, which all seem to point to there being a real shift in public attitudes overall. …

Would you argue personal-belief exemptions have had a big impact on herd immunity?

To understand the role that personal-belief exemptions have had on herd immunity, you only need to look to some of these schools in Marin County, [Calif.], where there’s 30 percent of kids who aren’t vaccinating, obviously not for medical exemptions.

So you have communities where there essentially is no more herd immunity, where measles and pertussis and any other disease can come back into that community really almost entirely because of personal-belief exemptions. You look at states like Mississippi and West Virginia that either don’t have personal-belief exemptions or have very, very rigid ones, and you see the highest vaccine uptake rates in the country. As a result of that, you see that herd immunity in those areas is not compromised.

If you look at a map of the country, and you look at the areas and the communities where you have low vaccine uptake rate, you look at the places where herd immunity is either threatened or has been compromised, those really are places where it’s easier to get personal-belief exemptions. It’s not hard to connect the dots. …

[Can you give us an overview of the Disneyland measles outbreak? What does it say about where we are today in the vaccine debate?]

… You had one case at Disneyland that has now spread to over 100 infections, not just in California, to different states around the country, and because of that, it’s something that’s gotten a lot of attention.

I think that this is another one of those examples of how the national conversation is shifting, because I think what that has done is really highlight and bring awareness to the fact that a single person infected with this disease can have implications that are going to go on for months for hundreds of people, and, as a result, are going to cost millions of dollars.

Measles is the single most infectious microbe known to humankind. If you have one person with measles in a room, that person can leave the room; two hours later someone else can come in and still get infected. So when you have someone in a public place like Disneyland or on a plane or in a shopping mall, the ripple effects of that can be almost impossible to quantify. …

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