The Vaccine War – PediaCast 329
New York Times Best-Selling author and investigative journalist, Seth Mnookin, drops by the PediaCast Studio to talk about his latest book on the vaccine-autism controversy. Hear the events that ignited and fuel the anti-vaccine movement. Why are parents distrustful of science? And what can moms and dads and doctors and scientists and journalists do to promote evidence as we seek best outcomes for our children? It’s an episode of PediaCast you don’t want to miss!
- Seth Mnookin
New York Times Best-Selling Author & Journalist
The Panic Virus: The True Story Behind the Vaccine-Autism Controversy
- The Panic Virus: The True Story Behind the Vaccine-Autism Controversy
- Secrets of the MMR Scare: How the Case Against the MMR Vaccine was Fixed
- Secrets of the MMR Scare: How the Vaccine Crisis was Meant to Make Money
Announcer 1: This is PediaCast.
Announcer 2: Welcome to PediaCast, a pediatric podcast for parents. And now, direct from the campus of Nationwide Children's, here is your host, Dr. Mike.
Dr. Mike Patrick: Hello, everyone, and welcome, once again to PediaCast. It's a pediatric podcast for moms and dads. This is Dr. Mike, coming to you from the campus of ;Nationwide Children's Hospital. We're in Columbus, Ohio. It is Episode 329 for October 15th, 2015. We're calling this one "The Vaccine War".
I want to welcome everyone to the program. So last week, we did a show on MRSA, which stands for Methicillin-resistant Staphylococcus aureus. I know it's a mouthful, and that's why we're content to just call it MRSA. Dr. Sheldon Kaplan, Chief of Infectious Disease at Texas Children's Hospital, he stopped by the studio to enlighten us all on treating and preventing MRSA infections.
I mentioned then that I thought that particular episode would go on to have a long and glorious shelf life because MRSA ;infections are common. They generate lots of interests, and those facts will likely remain true for the foreseeable future.
This week, I feel pretty good about extending that prediction to today's topic. We have another buzzworthy episode lined up for you on immunizations, autism and the vaccine war that continues to rage in the hearts and minds of parents everywhere.
It's a war that's reared its head in number of times in recent months, and most recently, the GOP presidential debate on CNN last month drew more than a little heat from the medical community because of the candidates — and I won't mention names here or indicate in question did or did not attend medical school — but some of the candidates perpetuated this claim that vaccines are linked to autism or that vaccine risk outweighs benefit, despite a profound lack of scientific evidence in support of these claims.
And so, vaccines made their way into social media and water cooler conversation again, much like they did during the Disneyland measles outbreak, and when California signed strong vaccine legislation into law, which will eliminate exemptions based on personal beliefs for children who wish to attend school in that state. So we've been talking about vaccines again, and it really does feel like a war as these battles pop up and both side take aim of each other.
Now, here's the thing. Both sides have their children's best interest in mind. We all care about our kids. Personally, I'm in favor of vaccines, not because I'm a doctor, but because ;– and you know this about me — I'm passionate about the evidence and looking at benefits and risks and considering our own risk tolerance in light of communities and public health. If you've listened to this show very long or followed our social media feeds, you pretty much know where I stand on this.
We've done segments on vaccine safety many times in the past but I haven't done a single episode really dedicated to the topic, one that sort of tied up with a bow and ready for you to share with friends and family in the digital space. I've been asked that lots of times. Like, "Do you have a show you can point us to that I can tell my aunt about?"
And so, this is going to be the one and we just wanted everything neatly together. I've been thinking about doing this and getting everything in one place for awhile now, and then the GOP debate happened. ;Again, we had misinformation hitting widespread platforms, and I knew the time was now. Combine this with the fact that Nationwide Children's is hosting New York Times bestselling author and investigative journalist, Seth Mnookin, this week to talk about his book, The Panic Virus: The True Story Behind the Vaccine-Autism Controversy. And I just knew the perfect ingredients were coming together.
I was hoping we could get Seth on the show to talk about vaccines and autism, take a candid look of how this whole mess got started, why it happened, how it happened, what is perpetuated bad science, myths and fears and what he thinks we can do about it. Because as a journalist who has written for just about every major publication you care to mention, he really does have a pulse on the American parent and family.
As it turns out, Seth was gracious enough to say, Yeah, I'll sit in for a PediaCast interview. So I'm really excited to get him settled in to the studio to talk about these things. Should make for a great show and one that will sit on our virtual reference shelf alongside last week's MRSA episode for a nice long time.
Before we get started, I do want to remind you that PediaCast is your show. So if you have a topic you'd like us to talk about, you have a question for me, you want to point me in the direction of a news article or journal article, it's easy to do. Just head over to PediaCast.org and click on the Contact link. You can also call and leave a voice message. Our number is 347-404-KIDS. That's 347-404-5437.
I also want to remind you, the information presented in PediaCast is for general educational purpose only. We do not diagnose medical conditions or formulate treatment plans for specific individuals. So if you have a concern about your child's health, be sure to call your doctor and arrange a face-to-face interview and hands-on physical examination.
All right, let's take a quick break. We will get Seth Mnookin settled in to the studio and talk about vaccines and autism. That's coming up, right after this.
Dr. Mike Patrick: All right, we are back. It is an honor and a pleasure having Seth Mnookin in the PediaCast studio today. Seth serves as co-director of MIT's Graduate Program in Science Writing and is an accomplished writer and journalist. His work has appeared in Newsweek, The New Yorker, Wired, Vanity Fair, The New York Times, The Washington Post, The Boston Globe. I could name many more.
He's also The New York Times bestselling author of Feeding the Monster: How Money, Smarts, and Nerves Took a Team to the Top, which chronicles the challenges and triumphs of the John Henry-Tom Werner ownership group of the Boston Red Sox.
More recently, his writing has turned toward science, which has resulted in recognition by the National Association of Science Writers with their Science in Society Award in 2012, and by the New England Chapter of the American Medical ;Association with a Will Solimene Award for Excellence.
The FDA has also taken notice, including Seth as a member of the Expert Working Group on Medical Countermeasure Emergency Communication Strategies. His most recent book is The Panic Virus: The True Story Behind the Vaccine-Autism Controversy.
That's what we're talking about today, so let's give a warm PediaCast welcome to Seth Mnookin. Thanks for joining us.
S: Thank you for having me.
M: Really appreciate you stopping by. So your book came out in 2012, but it's just as relevant today as it was then, probably more so, given the Disneyland measles outbreak, last month's GOP presidential debate with assertions that again, vaccines are linked to autism, kids get too many vaccines, we should be giving lower doses, none of which is based on evidence. So it's a great time to be talking about these things and for parents to be reading your book.
S: Yeah, the hard copy actually came out even earlier, in 2011. The paperback, which is slightly revised, came up in 2012. I remember, actually, at both publication dates thinking because of recent events in the news, "OK, well, this is sort of a done deal. No one's going to be talking about this anymore."
When the hard cover came out, that was not long after Andrew Wakefield lost his medical license — the doctor who is the original proponent of the idea that the measles mumps rubella vaccine cause autism. His paper had been retracted by The Lancet. ;I figured, all right, well, we're done here, and that has obviously not ended up in the case.
Dr. Mike Patrick: Yeah, unfortunately. Fortunately for you I guess. Unfortunately for kids.
Seth Mnookin: I'd be happy if it disappeared.
Dr. Mike Patrick: Yeah. Now, how does a journalist — and you written a book about the Boston Red Sox — how do you become interested in writing about science?
Seth Mnookin: Well, my undergraduate degree was in History in Science. Right after I left school, I started a career in journalism. There were a couple of different points over the next decade, or decade and a half, where I try to get back into science writing and for one reason or another, didn't work out.
My book about the Red Sox did fairly well through no fault of my own, but my publisher, I think probably misinterpreted its success as having to do with me and not the team. And so, I'd some more freedom and latitude to choose the topic of my next book. This was a subject that I had noticed was coming up a lot in discussions with my peers.
When I started working on it, my wife and I were not parents and we're not expectant parents, but a lot of our friends were. And again and again and again, in conversations at dinner parties or over brunch, these issues of vaccine safety and efficacy would come up.
What got me interested in it, initially, was that when I asked my friends, "How is it that you're making this decision? This is one of the most fundamental decisions you're going to need to make about your young child's life." I didn't get answers like, "Well, I'm reading the relevant literature" or even, "I'm talking to my doctor." People tended much more to say, "Well, it feels to me as if kids today are getting too many shots too soon." Or, "It seems like it couldn't be that bad to skip extra Y-Vaccine".
And at that time, I had no idea it was possible that their intuition was true. I had no idea. It wasn't something I would look into. But I was surprised that my friends were making decisions about a scientific issue based on instinct. I think I sort of snobbishly associated that with people who ignored climate science or maybe people ;who ;didn't believe in evolution. So, I thought that surely none of my group of lawyers and computer programmers, and scientist, and journalists are making decisions in a similar way, based on instinct and intuition as supposed to ;looking at the evidence.
So that was what really started this whole investigation and this whole process. And then, it became much more about this specific issue than that sort of philosophical question of how do we as a society and as individuals decides what counts as truth?"
Dr. Mike Patrick: Yeah. You know, when I was early in my career as a physician, it was before the whole Andrew Wakefield fiasco took place. You'd have a few people that would question it, and they were really far between one another with you that you'd encounter these folks. It really was around 1998, when we just started to see more and more parents be aware of this and start questioning.
So, I really do think that the vaccine issue now really did start with Dr. Andrew Wakefield. Let's frame a little bit. Who was he and what did he have to do with all these?
Seth Mnookin: That's a great question. But just before I want to go back a little bit more. So I think you're definitely right. I don't know when your medical career started, but there was also a moment in the mid and both the late 70's and early 80's where there was similar fears — not exactly the same, but similar — surrounding the DPT vaccine. Those fears are actually one of the big reasons why the pertussis vaccine went from being whole cell to acellular.
There is a sort of similar parent-led movement of parents who were convinced that their children have been harmed by the pertussis vaccine. One of the main leaders of that movement, a ;woman named Barbara Loe Fisher, continuous to be active to this day. But there was a period, about a decade where these type of issues running vaccines were really weren't in the news a lot. It wasn't a huge issue on people's minds.
And then, in 1998, Andrew Wakefield, who is a British gastroenterologist, published or was the lead ;author on a paper that appeared on The Lancet, a very respected ;medical journal, ;that posited a connection between the measles component of the MMR vaccine and a new gut disorder, and then that gut disorder and autism.
So, the paper itself was careful to say that there wasn't any mechanism that they had identified. This was essentially hypothesis that needed to be studied and tested. It was nothing more than that, but Wakefield, when he then had interviews about this paper and actually held a press conference, he went way way off the reservation and essentially acted as if he had proven there was a connection, told parents not to give their children the MMR vaccine. That really started this period that we're still living in, where there is all this concern about that. ;
One of the things, when ;I went back and looked at it, that was so interesting to me is it's easy to posit Andrew Wakefield as being the culprit here. Certainly, I think he was a bad actor in this controversy, but anyone can say anything at any point. The problem with what happened with him is the UK press took what this one person was saying and treated it as in "on the one hand, on the other hand" debate.
So even though from the word go, other pediatricians, the head of his medical school, some of the other authors were all saying, "Wait a minute, we don't have any evidence that indicates that people should change their behavior that fast. This is something that deserves to be looked at more." In the press, it started to be treated as this guy thinks this, this guy thinks this, who knows what the real answer is?
Again and again, I think we've seen that treating a tiny minority of view points as essentially being worth and worthy of a more serious examination in the media, and so I think that my colleagues and my peers actually bear an enormous kind of responsibility for what has happened since then.
Dr. Mike Patrick: Yeah. I think you make a good point that you can't necessarily take these as being having equal evidence. And so, if we dig down just a little bit deeper on what exactly it is that he thought and then what he did to show what was his evidence. All scientific studies start, as you mentioned, with the hypothesis. His hypothesis was that the MMR vaccine, which does have a live attenuated virus or there is the live measles virus that — again, this is his hypothesis — leads to a chronic infection with that measles virus, which leads to a type of inflammatory bowel disease, which leads to toxins entering the body, which leads to brain damage which leads to autism. So that was kind of his hypothesis.
And then the study that he was talking about with his press conference just involved 12 children.
Seth Mnookin: Right. And that's a crucial point. I talked to some of the reporters who wrote those initial stories in the UK. One argument that they made was it's not their place to evaluate evidence. I don't really buy that as an excuse for running these stories for a couple of the reasons that you just pointed out. A case series is never under any circumstances the basis for a conclusion. It's the basis for a hypothesis. It's the basis for "this deserves further study."
There are all sorts of examples that I give. Oftentimes when I'm giving talks, I'll point to the first 12 people sitting in the audience and say based on that case series, 80% of the population is female, and 90% of the population is over the age of 30, based on whatever the characteristics those 12 people have. So drawing any conclusions from that small study is crazy. And anyone who's writing about science and writing about medicine and writing about issues that have the potential to really significantly impact the health of the population, I think needs to understand that at the very minimum.
Then, the second point he made, he wasn't saying that, "Oh, I think A leads to B." He was saying, "I think, A leads to B, which leads to C, which leads to D, which leads to E," and there is no evidence of any of those steps. It was all hypothesis. Parts of those hypotheses were based on theories that had already been discredited. One of the theories was the Opioid Theory of Autism which had been discredited decade earlier.
So you didn't need to have a sophisticated understanding of immunology or gastroenterology, or really any branch of science, to know that this is not ;the study that you should be drawing broad-based conclusions from.
Dr. Mike Patrick: Now, once this came out, it didn't take long for there to be immediate backlash, where investigators really around the world was like, "Look we're talking about a study of 12 kids." And then they started to look a little bit deeper into this and found that it ;wasn't only skewed and maybe coming up with saying prematurely that there was an association. It was fraudulent.
Seth Mnookin: Yeah. The revelations that have come out since the initial publication are shocking. If you wrote a screenplay or something based on this, you would say, "You can't have all that because you're stacking the deck. It's too much." So it turned out that Wakefield had been receiving money from a lawyer who was preparing a case against vaccine manufacturers, who was working with parents who believed that their children had been injured by vaccines.
His patients, which he claimed had been consecutively referred — so in other words, it just happened to be 12 random patients one after another who came in to his clinic — were actually sent specifically to him, some of them, by this lawyer who's trying to prepare a case against vaccine manufacturers.
He declared no conflicts of interests in the study. What he did not declare was that shortly before the paper came out , he had taken out a patent for a measles vaccine that would exist on its own, which would be precisely what parents would want if they thought that something about combining the measles-mumps-rubella vaccine was what made it dangerous, which was what he was arguing.
And then, as if that was not enough, it turned out that some of the results were likely fraudulent as well. So anyone who those things would have been enough to discredit the study, but again the point that I make with the journalists is even if none o f those things have been true, it's crazy to take 12 kids and say, "This is what parents should do based on this."
But the string of revelations about Wakefield, it's not even ethical corners that he cut. It's completely unethical behavior is really astounding.
Dr. Mike Patrick: There was another investigative journalist by the name of Brian Deer in the United Kingdom who also investigated this. He wrote a two part series that was published in the British Medical Journal that was really well done. I'll have links to that in the Show Notes as well so folks who are interested in more about it. He claims that these kids… It ended up none of them even had inflammatory bowel disease. ;In follow-up testings, they were all negative for any kind of chronic measles infection.
Seth Mnookin: He also talked to some of the parents, and some other things that he uncovered was the fact that a lot of Wakefield's conclusions were based on parents' ;after-the-fact recollections, which are notoriously unreliable. We could get into a whole discussions to why that is, but it's incredibly unreliable to take a parent's or anyone's memories about a potentially traumatic event and assume that represents what actually happened.
But one of the things he uncovered was it turns out that these traumatic events that they had remembered actually were not what they had told him in some cases anyway. ;So again, it's just every single step along the way.
Brian Deer is someone who did a lot of the initial work uncovering all the problems of Wakefield's study. While it's true that after his investigation started coming out in the early 2000s, then more critical examination was paid to Wakefield, there ;really was a couple of years where no one dug into what was going on there. It took Brian Deer to come, this incredibly dogged investigative reporter and say, "Wait a minute, what is going on here?"
Dr. Mike Patrick: Yeah, yeah. And we really need people like ;you and him ;who look into these things and can uncover it and present it in a way in folks can understand, so that we can see what's really happening.
Seth Mnookin: Right. Well, thank you. He probably gets more credit than I do, but thank you.
Dr. Mike Patrick: Now, one question that comes up is how is it that a doctor, a researcher can get collaborators on to a study like this? So Wakefield wasn't the only name on this research. There's other people who basically their ;names are on it as well. How was he able to convince them that this was a good idea?
Seth Mnookin: So I think that highlights something about how scientific research is conducted that a lot of people don't understand. The reason they don't understand it is because it intuitively doesn't ;really makes sense. But, when you see a paper with 10 or 12 or 15 authors, co-authors on it, they each could have contributed one piece of data. But because they have one piece of data that's included in this , they get credit as co-author. That's why there's always a lot of jockeying as to what position you are, if you're the first lead author. Or, the last author is also an important spot.
But there is just another example not that long ago of the case of the study about changing people's minds that was based on canvassing about gay marriage. There is a study that claimed that when gay canvassers went in California and canvas people who were opposed to gay marriage and spent 20 minutes with them talking about why it was important to them to get married, et cetera, they could change people's minds. And this was the study that the lead author ended up being a very prominent scientist from Columbia University. It turned out the grad student who had submitted those results had made them up. So that paper was retracted.
Now, there's criticism that the lead author should've had more oversight, and that's probably true. But I think what that illustrates is the scientific process is based on trust, and if you're going to collaborate with other people, you need to assume that when they say, "I found this," that they really found it.
In that way, it's very similar to journalism. You couldn't ever put out a daily newspaper if you have to go and re-report every single thing in the newspaper before it was published. The assumption is that most people are doing this in good faith, and when it turns out that someone is not, that's when it becomes an issue.
So there has been criticism of his co-authors and some of his co-authors have held on to this more tightly than others, but most of them have disavowed his work and have not suffered the same repercussions in their reputations as he has.
Dr. Mike Patrick: Yeah. And I guess the same could be said for the journal that published it in the first place, in terms of why would The Lancet publish this, but there's this group of authors who respected, and it was peer reviewed.
Seth Mnookin: Well, it's an interesting point. I might be a less sympathetic to Lancet there. They, at that time, had a relatively new editor who was actually still the editor of Lancet now. And there had already been some discussion about that he was trying to sort of sax up the Lancet or get some attention for it. Saxxing up medical journalists is different than saxxing up Vanity Fair. But when this paper came in for peer review, it was rejected. It was roundly rejected and sent back, and when it ended up being printed eventually, it was slapped with a label, Early Report — sort of a further indication that not only it's just a 12-person case series, but that was like another warning sign that you should take this with a grain of salt.
What was even more significant was the editor commissioned a commentary on the study by two FDA scientists, and they absolutely ripped it to shreds, just eviscerate, pointed out the methodological flaws, the logical flaws. Basically said, "You're crazy to print this," but in this commentary, that is not what commentaries are usually used for. Commentaries generally are a way of a journalist saying, "Look at what we're publishing. It's really important. Everyone should pay attention."
Dr. Mike Patrick: And this is how you can apply it.
Seth Mnookin: Yeah, exactly. And so the fact that they ran a commentary that essentially said you're crazy to have run this was another indication that this was not a typical study. So, immediately after it was published, there were people who said this is the worst that's ever been published in the history of Lancet.
So, I don't it's as straight forward to saying, well, case series are published all the time. There were red flags and concerns raised about this from even before the period.
Dr. Mike Patrick: So, the end result is the other authors other than Wakefield retracted their involvement with it.
Seth Mnookin: Yeah, not immediately, but over time.
Dr. Mike Patrick: And Lancet retracted this study as well. Dr. Wakefield lost his license once they found all these fraudulent business with…
Seth Mnookin: Yeah, he lost his license because of those things, but I think that gets gloss over sometimes. One of the big reasons he lost his license and perhaps the single biggest reason he lost his medical license was because he was taking blood from children at his son's birthday party for experiments, and he would pay them in lollipops or in a couple of in some tiny amount of money. And he was recorded making fun of these kids for not wanting to get blood drawn at the birthday party and was saying how one of them fainted, and so at next year's party he's going to have pay them more for this.
So, as a father, and actually we have a couple of birthdays coming up with my kids, all I can say is worst birthday party ever. I feel horrible for his kid. That must have been tough at school to you know, "Here's Johnny's birthday party!"
Dr. Mike Patrick: Yeah, no kidding.
Seth Mnookin: So it was not just the problems with this paper. To be clear also, it wasn't so much the problems with the paper. It was concerns that he had subjected children to invasive and potentially dangerous tests that they did not need to be subjected to, and that there was no indication or evidence that they should have been subjected to.
Dr. Mike Patrick: What is he doing today?
Seth Mnookin: He and I don't stay in close touch. As far as I know, he remains in Austin, Texas. After he lost his license and after the paper was retracted, he stepped back from some ;of the different activities he was involved with. So those places wouldn't get the negative publicity, but he's still active in what I call the anti-vaccine community. The people in that community disagree with me about that label, and he's still considered a hero/martyr for the group of people who are really fervently convinced that he was right.
Dr. Mike Patrick: Why do you think it is? So as we talk about this and we outline exactly what happened, to me the logical thing is this doesn't mean anything. I mean, there is nothing to this. So why is it that people believed it? I mean, because there had to have been that voice, and all along there's been that voice refuting it and saying, "No, these are the facts." Why do people believe bad science even when it's been clearly disproven?
Seth Mnookin: So, I'm going to answer that in a roundabout way. So in 2010 and 2011, over that period, he, as we said, lost his medical license and the paper was retracted. There were polls taken after that time, and there were people who — not some tiny minority people, a significant number of people — had not heard about this connection, this supposed connection previously, but after hearing that the doctor who made these claims lost his license and the paper was retracted, then believed that vaccines caused autism.
Now, that does not mean that those people are crazy conspiracy theorists. What it illustrates is something that researchers have known for a while which is merely saying something is going to lead a certain number of people to believe that it's true. It's why there's an adage in political campaigns that all you need to do is make an accusation. You don't need to prove it, and then that will stick to whomever you're making it against.
One of the more interesting studies about this was actually done in University of Michigan. The study was done on grad students. They were given a series of 20 statements and were told there's no interpretive aspect to this. These 10 are true, these 10 are false. Five minutes after, they had pretty good recall of what was true and what was false. But as little as an hour later, they were down to 50%.
So I think one of the reasons why even though the result is evidenced from the get-go, why this seem to take hold is because by voicing that, all of a sudden you'd planted that seed in people's minds. And it's very easy to scare someone. It's very hard to unscare them.
It's why if I was told that the hotel I'm staying at that there was a bomb threat there and then half an hour later was although actually, no never mind, I still am going to be a little bit anxious if I go into that hotel that night.
Dr. Mike Patrick: Or bed bugs.
Seth Mnookin: Yeah, that's actually right. It doesn't need to be as awful as… So you combine that with the fact that in this case, I think vaccines have very clearly been a victim of their own success. So by the late 90s and certainly today, so many of these childhood diseases that we're vaccinated against have become totally notional concerns to most parents.
I have never met someone who's paralyzed with a polio. I have met people who were injured because of polio, but people who are 10 years younger than me might not have even had that experience. I don't know anyone who was blinded by German measles or rubella.
So in the late 90s, early 2000s, 2015, if parents were asked to weigh on the one hand the risk of coming down with the disease that as far as they're concerned seems like something that was around when their grandparents were alive versus potentially getting autism — which during these exact period was exploding in people's consciousness — it's pretty easy for me to see why it ended up taking over, being such a sticky idea. You're taking something that seems like a very low risk and comparing that to something that is, not only in a lot of people's minds, a big risk, but also a big risk that we have no solution for.
Dr. Mike Patrick: And I think when we look at the time frame which this all came about, this is right at the time when the Internet is just really firing up. Social media wasn't as evolved as it is today, but there were certainly bulletin boards out there. You could get to America Online and get in a chat room, and they had chat rooms that were around specific topics like autism. And so there was this sort of new way to spread this fear, so to speak.
Seth Mnookin: Well, and not only ;was there a new way ;for it to disseminate, but also you had the experience where if you're in a chat room with 10 people, and you're all sort of saying the same thing, that can feel essentially like the whole world is agreeing with you. It takes a very small number of people in actual or virtual environments to create the sense that this is a norm, this is what's going on in the community.
It was the early days of the Internet being widely used, really widely used. Along with that, you had access to a lot of primary documents people hadn't had access to before. You had an explosion in the number of ;children who are being diagnosed with autism or Autism Spectrum Disorders, and you had no answers for the parents of those children.
So, you put all those things together, and you ended up with communities of people online who not only took what Wakefield was into heart, but then started researching it on their own and doing sort of citizen science projects. The problem with citizen science projects is that interpreting evidence can be hard and figuring out not only what's random noise, but when you're sort of poisoning the pool of subjects that you're taking from… Not poisoning the pool, but looking at a subset, that means that you're going to predetermine what the outcome is. All those then become issues.
Dr. Mike Patrick: Yeah, or just because two things are associated doesn't meant one caused the other.
At the same time is all that's going on, we have this irresponsibility of the mainstream journalism. Then celebrities, people who are role models basically speaking out and saying things that have no evidence.
Seth Mnookin: Yeah, that was a big part of it. There was a bigger part of it in the US than it was in the UK. It's interesting.
The MMR issue really became a big deal in the UK right away, right from when Wakefield published. It didn't in the US. What happened in the US is a year later in 1999. There was a law called the FDA Modernization Act of 1999 that mandated that all federal agencies report on the amount of mercury in anything they ever saw with ;the environment, or as a way to figure out exactly what's going on.
At that time, there was a mercury-based preservative in some pediatric vaccines or some variations of some pediatric vaccines called thimerosal. When this act was passed, it was actually the FDA Act of 1997, agencies had until 1999 to report the result. So there were two years to put this information together.
Everyone knew involved with vaccines knew that this preservative was there. It wasn't until the weekend before, and this would happened to be July 4th weekend in 1999, that people had start reporting this. That, the AAP and the CDC got together to figure out what to do about the fact that the total amount of thimerosal that it was possible for a child to receive was higher than what was considered as safe dose of a different type of mercury.
Dr. Mike Patrick: And it was still about what's in one can of tuna fish if you added it all together.
Seth Mnookin: Yes, that's right, but of a different type of a mercury. So it was ethyl versus methyl mercury and which sounds like it's just essentially the same thing. But ethyl alcohol versus methyl alcohol, one will give you a buzz, and one will blind you or kill you. So there can be a big difference there. Nevertheless, I think it certainly was problematic to say the least that no one had done that research before.
The fact that the CDC and the AAP hadn't figured out what they're going to do about this resulted in ;a series of really jumbled statements. So they ended up recommending that thimerosal be removed from pediatric vaccines even though there is no evidence that it was harmful.
So the American Academy of Pediatrics said that they were doing this so that they could make safe vaccines even safer. As a parent, if someone tells me this is safe for your child, I don't think of that as being on a sliding scale. I assume that they're not going to come back a week later and say, "Oh, you know what? This is safer and then in another week, I'll tell you safest."
The CDC said that there was no evidence of harm, and that became a rallying cry because that was interpreted to me in that there's about to be evidence, we just don't have it yet.
There was a parent-led movement that grew out of that group that ended up calling themselves Mercury Moms. And that really was what started the environment that were currently in, in this country, and then the MMR and mercury issue combined.
Dr. Mike Patrick: ;There were consequences even from that decision because when they took mercury out of the vaccines, the reason it was there is that it would have a multidose vials of vaccine. So, you have preservative to keep stuff from growing in it from the time it was opened till the last dose was given. So they had to switch to single dose ones, but they didn't rev up production. So once they took this all out, I remember when I was practicing, that there were vaccine shortages right and left because production couldn't keep up with the demand.
Seth Mnookin: Right, right. And to get your question that preceded all that about celebrity, so yes. In this country, that's had a huge impact. I think the person, the celebrity who is most closely associated with this is Jenny McCarthy, the TV star and former model.
She went public with her belief that her son who had an autism-like condition, her belief that that had been caused by vaccines and was given multiple, very sympathetic airings on Oprah, which I think did an enormous amount of damage. But that was not unique. She was also in Larry King Live. She was on the morning shows. She really became the face of this sort of anti-vaccine sentiment.
I should say that she would deny that she's anti-vaccine. She would say that she's in favor of safe vaccine, but the standard for what she considers safe is a standard that's not possible in our world. She wants to overturn the null principle which says that you can't prove a negative.
And so, she wants you to be able to say, "I am a hundred percent certain that there's no circumstance under which vaccines could cause autism." And you can't say that just like you can't say, "I'm a hundred percent certain that if I went to the roof of this building and I jumped off, I wouldn't be able to fly." All I can say is, based on the evidence before me and based on everything that's happened every time someone else has gone on the top of the building and jumped off, I think would be a really bad idea, and I have overwhelming confidence that the result would be negative for me.
She has played a huge role in this. I think her influence has been in many ways amplified by at least the initial reaction of the public health and medical communities because she's someone who was in Playboy. I think was on the cover of Playboy six times. Started out her career on television as this sort of raunchy girl-next-door type who would say outrageous things and fart on TV.
And so, a lot of the initial response when she started getting attention was how is it that anyone is listening to this bimbo, this woman who takes all her clothes off for money? The fact of the matter is A, she's not a bimbo, she's incredibly smart; and B, what that translates to for a lot of parents is some expert in a white coat telling a single mom who's trying to do what she believes is best for her child, insulting her and downgrading her and saying, "Your opinion is not worth being heard. You're stupid, you took your clothes off, and we don't need to listen to anything you say." And that I think was the exact wrong message.
The appeal of Jenny McCarthy, the people who were hearing her are not 14-year-old boys with old issues of Playboy at the back of their closet, it's parents. It's moms and dads who are looking to her as another parent struggling with what to do for her child.
Dr. Mike Patrick: ;And when she's on Oprah, you can tell she cares about her kids.
Seth Mnookin: Absolutely, yeah. It's a point that I try and make all the time, which is that I really completely believe that the parents who were most active about perpetuating this myth, that vaccines cause autism, are also totally sincere in their belief that that's true, and sincere in their beliefs that what they're doing is trying to make the world a better and safer place.
It's another reason why I think the media bears a lot of responsibility here because while they are sincere, they're also a minuscule percent of the population. And what happened in this debate, as what happens in most of debates, the people who shouts the loudest get the most attention.
Dr. Mike Patrick: And you talked about the role of the media and are critical. I'm going to be critical on the side of the physicians because I think as…
Seth Mnookin: We can both insult our colleagues.
Dr. Mike Patrick: I think that really the counter-narrative has been missing from this. Maybe because physicians aren't really trained communicators. A lot of interactions that take place are in the exam room on one-to-one nature, but that doesn't really go out in the social media. And really, we've been slow to get involved in the digital world and in social media because there's that fear you don't want to break patient confidentiality. You hear horror stories of doctors who do get involved in social media. But I think that's changing, but it's taking a long time.
Seth Mnookin: Yeah, I think it's absolutely changing and it's something at the same time that doctors have been hesitant about. Very understandably, it's not like doctors show up to work and work 90 minutes a day and then go home.
The thought of after a day of seeing patients stacked up one after another like flights on a runway at LaGuardia, after all of that, then needing to have a social media presence and needing to answer questions over email is exhausting. And by the same token, I think a lot of doctors are hesitant about sharing their personal experiences with patients, but that is one of the most effective things that doctors can do — say, "Look, I can give you all the evidence. I can show you all the data, but what I think is really important for you to know is, this is what I did for my kids." Or, "This is what I recommend for my nieces and nephews." That's going to be much more powerful than saying, "Look there were these 50 peer-reviewed studies that involved 8 million children," and whatever.
Dr. Mike Patrick: As parents are thinking about this and thinking about risks versus benefits, that's something that they think about, and so we want them to think about that in terms of vaccines and we really do believe that the benefits far outweigh any risks that are associated with it. But these are things that they think about risk versus benefit every day, even just when they get in a car.
Seth Mnookin: Yeah, exactly. A fact that is often repeated, which does not make in any less true, is that the most dangerous thing about having your child be vaccinated is getting in the car to drive to the pediatrician's office. By many orders and magnitude, that's the most dangerous thing. But again, I think that gets into issues of the risk-reward and the reward of getting into your car is going out and having a doctor's appointment.
The perceived reward for getting vaccinated is much smaller, and for a lot of parents, the perceived reward is nothing because again, they don't see any real risk of a measles infection.
Dr. Mike Patrick: The other thing I wanted to bring up is the Vaccine Adverse Event Reporting System are various. And this is something that the statistics within that get quoted a lot. Tell us what that is and why the statistics aren't really as helpful as some would say?
Seth Mnookin: Right, so this is another one of those areas that ;I think really exemplifies why this is so tricky ;to talk about and why it can be hard for smart, well-meaning parents to figure out what's actually going on.
So there's the Vaccine Adverse Event Reporting System. It's a system by which anyone who thinks there's an adverse event essentially can go and report it in the system and it'll get tallied. All that has happened has to be within a certain amount of time of getting vaccinated. So if your child is vaccinated and a couple of days later develops a high fever, that would go in the Vaccine Adverse Events Reporting System.
What the reporting system is designed to do is take the totality of these data and then figure out if when it looks at the number of kids who had a high fever a couple of days after this vaccine, is that greater than the number of kids in the population in general that develop a high fever in any given day? So it might be a 3000 reported cases of the pertussis vaccine resulting in a high fever with the next amount of days, and that's the exact same percent of people of the population in general that would be expected to develop a high fever.
So that's why when the statistics from that are quoted, they're often quoted as if what does system does is reports on adverse event that are shown to have happened because of the vaccine.
Another thing about the Vaccine Adverse Events Reporting System is it's self-reported. I think, understandably, there's a very low barrier to entry, because if you're interested in actually finding out what adverse events might be real, you want to get as wide a base of samples as possible. But, again and again, those statistics have been used to "prove" that this vaccine is causing that reaction.
And that's been true with autism. We could get in to the vaccine court, which is another whole complicated thing, but there is whole separate court system in the United States that deals with that vaccines and adverse events.
Dr. Mike Patrick: And the reason that was set up was because it was foreseen that you could see lots of lawsuits against vaccine.
Seth Mnookin: Yeah, there was a fear that vaccine manufacturers ;would no longer be willing to sell in the United States essentially. That the risk of potential law suits were so high that even if none of them were actually shown to be true, that you still might have a jury to side in one way or another, or the cost of defending them could be so high. The vaccine court was set up at the time that I think there are only three vaccine manufacturers at that time that were still selling to the US.
So there was this very real concern. But the vaccine court has also been set up with a very low threshold, not for proof, but for rewards, for which is what it's called when a family is found. When they have a victory in the vaccine court, typically that's some payout.
And it's not the preponderance of evidence. All that the vaccine court requires is showing that a given set series, one of a set series of reactions occurred within a set time frame after vaccine. You don't need to show in the least that A was caused by B, and then you're entitled to some sort of reward.
Dr. Mike Patrick: I think the cost of every vaccine, some percentage of that goes into that, for those payouts.
Seth Mnookin: Yes, exactly. I know this is getting a little bit into the weeds, but the way that they determine what adverse events patients will get rewards for is by establishing what adverse events are theoretically possible after a given vaccine.
So there were thousands of people who are reporting autism. Autism was not on the list of accepted injuries for any of the vaccines. So there ended up being an enormous omnibus case in the vaccine court where they combined thousands and thousands of cases and chose one plaintiff for various theories, and then tried those.
Again, the standard here was not prove that A causes B, but it showed that it's possible. All of those omnibus cases was ruled that there was absolutely no connection. What was so fascinating about that, I think it illustrates the fallibility of the human mind.
In one of the cases, there was a mother who testified about her daughter and how her daughter had had a set of words that she was able to say, and then was vaccinated and then from that day forward, was not able to speak. Her memories were very specific because some of these events occurred right around Christmas. I think there was one doctor's appointment that she remembered. It was the day after Christmas. I might be getting it wrong. It might have been two days after Christmas. And she was certain about these memories.
Because this was a court case, the doctor's notes were missing because she was the plaintiff. The doctor's notes were admissible, as were home video that the family had taken. It showed consistently that her memories were incorrect, that the order that she remembered things as happening was not how they actually happened. That doesn't mean she was lying. That's what the human brain does. ;It tries to create narratives out of things that otherwise will be inexplicable.
Dr. Mike Patrick: To try to make sense of them.
Seth Mnookin: Exactly. To try and make sense of them. So I think that's a very poignant example of why there are so many parents who are a hundred percent convinced that this is what happened to their child.
A point that I try and make is that this family — there was a plaintiff in this case — like ;a lot of families did not get the care or services that it needed. They were living in a rural area. They were hours away from the nearest specialist. They were not a wealthy family, so they couldn't afford to travel whenever they had to get specific care. They understandably felt kind of abandoned by the medical system that existed around them. ;
And when I would go to conferences, in what I would call anti-vaccine conferences, they would disagree. What I came away from, what I came more from those with was the feeling that it didn't need to be vaccines that these were focusing on. It could have been fried chicken causes autism, or linoleum causes autism. What that theory provided was it created a community ;of people who were supporting each other and getting support in the way that they weren't in any other place.
And if families of children with autism felt that support in their everyday lives and in the social systems that were built up around them, I think you would have this type of situations happening much less. But it's easier to say, "Oh, all these crazy people who think vaccines causes autism," it's easier to look at it that way than to look at what we need to do as a society to make these families feel and to actually give them the support that they need to care for their children.
Dr. Mike Patrick: Yeah, and to validate the fears and concerns that they have.
Seth Mnookin: Absolutely. Because it's very tough. One of the reasons why I think it's been so hard for these families is because they're told, "We are a hundred percent sure the vaccines won't cause autism and we have no idea what does. And we also have no idea to help you. We have no idea what treatment, ;what intervention, what therapy is going to change things."
Dr. Mike Patrick: Although we are making great discoveries in genetics now.
Seth Mnookin: There's headway, yeah. But it hasn't paid off in terms of what you see in families on the ground.
Dr. Mike Patrick: So at the end of the day, what advice do you have for parents who are struggling with the vaccine decision. They're hearing it from both sides and their minds is probably more equal than what it really is, but what would you ;advice them?
Seth Mnookin: So I think one thing that it's really important ;to point out to parents and that it's important for parents to know, is that the vaccine uptake rate in this country is well over 90%. When I talked to parent and asked them what they think the percentage of parents who fully vaccinated their kids are, I'll often get guesses of 60% or maybe 70%. And it feels like that because of the way that we discuss it.
I think even just letting parents know that it's not just the majority of parents, a vast overwhelming majority of parents vaccinate their kids. I think that's something that sets people's mind at ease. So that's one thing that's important.
Another thing that I think would help — this isn't really something parents can do, but something that I think would help in general — is if we were able to initiate the discussion that parents have about vaccine with a medically trained professional at some point before there's a doctor or nurse practitioner with a needle in his or her hand.
Something that I've been advocating for a couple of years is finding some way to initiate that conversation in prenatal visits. Now, OBs do not want to get into the vaccine game. That said, there are ways you could have information sheets that are available. You could have when parents interview pediatricians, which they often do, ;you could make sure that it's a part of that conversation before a child is born.
The reason why I think that could be helpful is because in my own experience, in all of our prenatal visits, my wife and I had a notebook and a series of questions and we wrote down the answers, and we went home and talk about it. By the time we were at a wellness visit and our son was getting vaccinated, we barely slept in weeks. Our son was colicky. We were totally overwhelmed. We felt like, "What did we get into?"
First of all, because we were exhausted and overwhelmed, we were primed for fear, and our ability to take in new information was quite low. So finding some way to initiate that conversation beforehand. And something that parents can do is if they have concerns, voice them instead of burying them. Hopefully, doctors will not just dismiss them.
Again, it's easy for me to say because I'm not the person who has 15-minute wellness appointment stacked up one after another, but it's one of the ways that I think we, as a country and pediatric practices specifically, need to rethink how some of this communication is going.
So another suggestion that I made is that pediatric practices or groups of pediatric practices depending how large they are, have office hours, one night a month or two nights a moth where for two hours, parents can come in and ask questions. There's no expectation of confidentiality because other parents will be there. Ask questions and get answers. The reason why that appeals to me is because then you have parents in contact with each other also.
Or, designate someone as sort of the vaccine expert for that practice. So when a parent comes in with a question and the doctor or nurse practitioner either doesn't know the answer or can't answer at that point, instead of just saying, "No, no, no, that's crazy, don't worry about it," they can say "I'm going to put you in touch with X. You can email, call, whatever, this person, and he or she deals with vaccine issues for our office and now answer those questions."
Dr. Mike Patrick: Yeah, that's a great idea. We really appreciate you taking time to talk to us.
Seth Mnookin has been my guest today, author of The Panic Virus: The True Story Behind the Vaccine-Autism Controversy. We'll put links in the show notes over PediaCast.org where people can find information about your book.
Seth Mnookin: Great.
Dr. Mike Patrick: What's the feedback, then?
Seth Mnookin: The feedback has been overwhelmingly positive, except from the people from which it has been overwhelmingly negative.
Seth Mnookin: But on the whole, it's been very, very positive.
The reason why I set out to write it was because of the question that I asked at the outset — what do we consider truth? But also, because when I started to look into this specific issue more deeply, there was a lot of information I could find that was coming from a partisan on one type or the other and not a lot of information or any information from the perspective of a parent who didn't know what to do about this. So, one of the ways I think about my book is, this is what any parent would have found if he or she had three years to devote looking into this one issue.
Yeah, so the response overall has been incredibly positive and very gratifying.
Dr. Mike Patrick: Great. I'll highly recommend it, and hopefully folks will follow the link and take a look for themselves. Really appreciate for stopping by.
Seth Mnookin: Yeah, thank you so much for having me.
Dr. Mike Patrick: All right, let's take a quick break. I will be back to wrap up the show after this.
Dr. Mike Patrick: All right, just want to take time to thank all of you for making PediaCast a part of your day. Really do appreciate that.
Also, thanks again to Seth Mnookin, journalist and New York Times bestselling author of the The Panic Virus: The True Story Behind the Vaccine-Autism Controversy.
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