Editor’s Note: PLOSBLOGS invited independent science journalist Beth Skwarecki to assess and contextualize the controversy which errupted in the US surrounding last month’s release of Vaxxed, a documentary film made by and about anti-vaccine proponent and discredited doctor Andrew Wakefield. Our purpose in publishing the post that follows is not to review this film (problematic in any event since preview copies were not made available to press), but rather to provide a context for the reignited debate about vaccines that it has already provoked–and may still cause as its distribution expands to Asia. We want to help our readers–including parents attempting to make the correct decision about vaccinating their children, public health providers responding to vaccine hesitancy on the part of worried parents and public health researchers charged to provide evidence-based guidance on best practices for communicating vaccine efficacy and safety–to counter the current re-emergence of anti-vaccine messages, many previously addressed and carefully debunked by the scientific community. The post has been lightly edited for clarity. — Victoria Costello for PLOSBLOGS
By Beth Skwarecki
The release, cancellation and subsequent re-release of Andrew Wakefield’s new anti-vaccine movie, and the accompanying controversy, enjoyed a large if brief media footprint. Google’s trend line for Vaxxed peaked around March 27 when Robert De Niro withdrew it from the Tribeca Film Festival thanks to pressure from the public health community, and got another bump around April 14 when De Niro went on the Today show and answered questions about it while promoting the festival.
The movie’s April 1 premiere showing is one of the lowest points on the graph. But the possibility that the film’s continuing distribution in theaters along with Wakefield’s return to the public eye may resurrect disinformation about vaccines has many public health professionals concerned.
In the years since his discredited 1998 paper (and its 2010 retraction), Wakefield has been quietly attracting followers who see him as an authority on the mythical MMR-autism link. He has written books and spoken at conferences. And two years ago, he made a video about a supposed CDC cover-up about the MMR vaccine causing autism in African-American boys.
In that video, Wakefield delivers a lengthy description of the horrible Tuskegee experiment, implying that MMR vaccination is basically the same thing. He compares the CDC unfavorably to genocidal dictators: “Violent as the crimes of Stalin, Pol Pot, and Hitler were, these men were not hypocrites.”
The story in this video and in Vaxxed rests on a 2004 paper that looked for a link between autism and the MMR vaccine, and found none. An anti-vaccine researcher re-analyzed that paper’s data and claimed to find a subgroup, African-American boys in a particular age range, whose autism risk seemed to be linked to receiving the MMR vaccine.
The analysis is bunk, was retracted, and its findings are patently false. The filmmakers present this as a “CDC whistleblower” narrative, but that is likewise overblown: the alleged whistleblower’s words are used in this movie without his permission, and he has issued a statement that he “would never suggest that any parent avoid vaccinating any children of any race.”
The good news is, for now, that this seems to be a very small audience.
“Vaxxed is an interesting story in that it really just didn’t happen,” says Paul Offit. He’s the director of the Vaccine Education Center at the Children’s Hospital of Philadelphia, co-inventor of a rotavirus vaccine, and an outspoken advocate for vaccines.
“I was so worried when Robert De Niro stood up, so worried that this would do exactly what the filmmakers wanted,” he says: drumming up anti-vaccine sentiment.
But the media didn’t fall for it. Take ABC World News for example. The day De Niro pulled the film from the lineup, the show aired a two-minute news segment reporting on the controversy. Vaxxed’s producer, Del Bigtree, appears just long enough to deliver a quick sound bite.
“The film is just the truth as we have found it,” he says. A youtube video shows the full interview that generated Bigtree’s quote. The title promises to reveal what “Big Pharma didn’t want you to see,” but what it actually shows is responsible journalism. After a first softball question, reporter Eva Pilgrim asks Bigtree why he decided to partner with a known fraud. Then she calls Bigtree out on the movie’s gratuitous fear mongering. The producer spouts predictable excuses: Wakefield is the real victim here, it’s not the movie that’s scary but the facts that are scary, and so on.
The segment ABC aired includes his comparatively benign quote, and puts it in context. Right before it, Wakefield’s infamous paper scrolls up the screen with “RETRACTED” in red capital letters. Right after it, ABC’s chief health and medical editor Richard Besser appears on camera to state definitively: “Study after study [has] been done, and [has] shown vaccines do not cause autism.”
The movie’s own website can’t link a single mainstream outlet that gave it a good review. The closest is a mildly positive review from SFgate that calls it “compelling viewing” while refusing to assess whether its claims are actually true. The review repeats lurid details before disclaiming them with sentences like “Viewers will determine for themselves how persuasive they find these anecdotal accounts.” The movie, of course, gives them no accurate context to do so, so the review’s neutral viewpoint is unfair to readers. But, happily, reviews like SFgate’s were a minority of the overall media coverage.
“If you look at the way this story was handled by the media, it’s very different than I think the way it would have been handled 15 years ago,” says Offit. “I mean every major newspaper that carried this story–Wall Street Journal, New York Times, Washington Post, LA Times–all basically carried this as a scientist who’s been defamed, a hypothesis that’s been disproven.”
Where the Myths Come From
The start of the anti-vaccine movement is hard to pinpoint, because there have been objections to immunizations for as long as the concept has existed. In the seventeenth century, Americans and Europeans learned about an Asian technique for conferring immunity to smallpox, and Edward Jenner popularized a similar method involving cowpox (the original “vaccine,” from the Latin for cow).
That sparked an anti-smallpox vaccine movement, which coalesced into organized anti-vaccination leagues as vaccines became mandatory. British citizens protested they should have the right to refuse vaccination since it carried personal risk, and the result was the first vaccine exemptions.
Most public health historians trace the current wave of anti-vaccine sentiment back to a 1982 television special called DPT: Vaccine Roulette. The diphtheria-pertussis-tetanus vaccine at the time contained killed, whole cell pertussis bacteria (in addition to diphtheria and tetanus toxoids), and in some children this caused disturbing side effects, like febrile seizures. It did not cause permanent brain damage, but the television special claimed it did.
Seth Mnookin gives a brief history of Vaccine Roulette’s influence here (and in his book The Panic Virus). After the program aired, the station put concerned parents in touch with each other, and the modern anti-vaccine movement was born.
“Everything [reporter Lea Thompson] said was wrong, but there was no retraction,” says James Cherry, a pediatric infectious diseases specialist at the David Geffen School of Medicine at UCLA. Shortly after the special aired he appeared on the the MacNeil/Lehrer Report to discuss the DPT vaccine, and was surprised to find Lehrer sympathetic to the vaccine critics.
By contrast, when measles broke out at Disneyland in 2014, he says, “[the media and] the LA Times in particular did a superb job…just did literally everything right.”
The Mechanics of Propaganda
But careful reporting can’t change the fact that documentary-style programs can be persuasive and attractive to viewers, even when they aren’t backed by rigorous evidence. Everything from the movie poster to the way expert interviews are shown on screen gives us subtle cues that match our idea of what a fact-based story looks like, notes documentary film theorist and critic Bill Nichols.
In this way, says Nichols, filmmakers can build a compelling story on a foundation of fake information. After all, we humans love a good story. Stories work better than data, in many cases, to change a person’s mind. We also interpret the real world in terms of stories.
People’s attitudes toward H1N1 vaccination, for example, fit into larger narratives about, say, whether we trust governments and health authorities. “Good rhetoric typically draws on things that people already have in their mind as part of the way the world is,” says Nichols.
And we are, perhaps, drawn to ideas that help us interpret events as part of a clear, meaningful story.
“In these difficult things that have gray to them, like what causes autism–the presence of a magic bullet, the answer to it, the thing that makes it black and white, I think has an innate appeal,” says documentary critic Bill Nichols.
This is the story Wakefield spins so well. He “knows” why autism is skyrocketing, not better diagnosis–the present consensus as painstakingly recounted in Steve Silberman’s history of autism NeuroTribes–but, in Wakefield’s telling, vaccines.
Wakefield can give parents of autistic children, most recently Robert DeNiro, a deceptively clear reason why they should distrust the vaccines they may already have been feeling uneasy about; and he does it with archetypes like the scrappy underdog and the altruistic whistleblower who just wants to help your children.
Wakefield has, then, written at least two major works of fiction disguised as fact: his retracted Lancet paper, and now the pseudo-documentary Vaxxed. And in doing so, he is playing out a real world narrative that gives his followers a way to process inconvenient realities.
When reporters call Wakefield a fraud, he tells them that CDC scientists are the real frauds. When Houston’s mayor won’t give city funding to show anti-vaccine propaganda, they call the decision censorship and fume that it was “about money.”
The Fears Are Real, Even If the Facts Aren’t
“We fear things we don’t understand, and which our brains have trained us to fear, through a series of cognitive biases we’re all subject to,” says journalist Tara Haelle, co-author of The Informed Parent.
Her research-based Myths About Anti-Vaxxers series is an excellent reality check for anyone who thinks people who fear vaccines are simply denying science.
Take availability bias, she says. Most of us haven’t seen children suffer from measles. But if you poke around Facebook long enough, you’ll see stories from parents who say their child was injured by a vaccine. “Regardless of whether it’s true or not, that story is going to stick in your head,” says Haelle.
Once a person starts to believe the stories, confirmation bias takes over, and they’ll remember facts that seem to support what they already believe, while ignoring information that doesn’t fit. These biases shape everyone’s actions, not just anti-vaxxers. For example, doctors need to be aware of them when making diagnoses. These ways of making sense of our world don’t have to be logical; they bypass logic. That’s why simply correcting misinformation often doesn’t change opinions, especially if a person has bought into a whole narrative like Wakefield’s. But people who fear vaccines aren’t all hopeless cases.
“I don’t think most parents are conspiracy theorists,” says Offit. “Most parents get their children vaccinated.” (MMR coverage in kindergarteners is 94 percent.) He finds that hesitant parents are “generally reassurable.”
The catch is that not all vaccine-hesitant parents can be reassured in the same way. The first step might be listening to the parent’s concerns, to find out why they’re not enthusiastic about vaccines. We already recognize a distinction between people who are committed to an anti-vaccine stance and those who are “vaccine hesitant.”
But hesitancy itself isn’t a single viewpoint. Patrick Peretti-Watel and colleagues argue that there are at least two dimensions at play: risk and trust. Someone who doesn’t worry about risk, but also doesn’t place much trust in health authorities, may simply not put a high priority on getting their children vaccinated.
Meanwhile, someone who cares very much about risk, but distrusts doctors, might research individual vaccines exhaustively before deciding to skip some. Both of those parents would look the same on paper–their children would have incomplete vaccination records–but for very different reasons.
Another challenge in persuading vaccine hesitant parents is that their risk calculations are, in a sense, not necessarily wrong. With just 400 cases of polio worldwide last year, and none of it endemic in the US, a parent can play the odds and reasonably expect that their child will never contract polio.
Maggie Koerth-Baker writes that this is a key point public health people often miss: like the smallpox anti-vaccinationists, today’s vaccine refusers are choosing to avoid the risks of vaccination, tiny though they are, because they are weighing them against their child’s personal risk from a rare disease. But in the process, they are putting other people’s children at risk by creating gaps in herd immunity.
Since vaccine refusers tend to cluster together, “that provides the tinder to start outbreaks,” says Saad Omer of the Emory Vaccine Center. His recent paper on measles transmission, including the Disneyland epidemic, shows that unvaccinated people are overrepresented in the beginning weeks of an outbreak. Eventually the epidemic infects some of the people who had their shots (since no vaccine is 100% effective), but it gets to that point with a boost from people who turned down the vaccines.
On the bright side, changing parents’ minds isn’t the only way to get them to vaccinate. Omer’s studies of vaccine exemption laws find that more children get vaccinated in places where exemptions are harder to get. Instead of granting exemptions to anyone who prints and signs a form, states could require non-vaccinating parents to visit a doctor for a signature.
After all, he says, a parent who follows the vaccine schedule needs to invest time and effort; requiring the same of all parents is, in a sense, fair.
The Damage Done
There’s a lot of room to be optimistic: states are passing tighter exemption laws, vaccination rates are high, and the media are now consistently refusing to fall for anti-vaccine propaganda. But serious challenges remain.
We can’t change the past. Babies who weren’t given vaccines in 1998, the year of Wakefield’s most infamous paper, are now old enough to go to college. “The kids who don’t get vaccinated in childhood rarely get caught up,” Omer says.
There’s reason to believe we’re not entirely out of the conspiracy theory woods, either. Wakefield’s followers are now convinced that the CDC is specifically targeting African-Americans. That’s a demographic that often has low income and low health literacy, and who may be suspicious of health messages. Some studies show that African-American parents are even more likely than white parents to say they are “very concerned” about vaccine safety. For now, parents who completely refuse vaccines are more likely to be white and college educated, but many factors are at play. High and low incomes, and high and low rates of education, are each associated with vaccine hesitancy but perhaps in different ways.
The distributor of Vaxxed is making plans to show the film in China, where anti-vaccine sentiment is already beginning to brew. Countries that aren’t familiar with Wakefield and his claims might repeat some of the mistakes that US media is finally overcoming.
“Just like the US exports Hollywood movies, people look to American culture. And we are certainly exporting vaccine hesitancy,” says Peter Hotez, president of the Sabin Vaccine Institute and Co-Editor-in-Chief of PLOS Neglected Tropical Diseases.
“I’m worried particularly about some of the big middle income countries,” including China and others, Dr. Hotez says, where international public health efforts have recently made significant gains in increasing vaccination. He continues, “All of that could start to unwind because of that anti-vaccine sentiment.”
And, just to keep things interesting, Andrew Wakefield recently posed for a photo with an allegedly vaccine-injured dog. Pertussis and measles are bad enough; we don’t need rabies to make a comeback too.
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Dr. Paul Offit’s review of Vaxxed, the Andrew Wakefield film, as published in The Hollywood Reporter on April 11, 2016.