It took investigative reporter Seth Mnookin three years of ten-to-twelve hour days to research and write The Panic Virus, his new book on the roots, flowering, and rotten fruit of our culture's anti-vaccine fears -- so this review and my interview with Seth at The Thinking Person's Guide to Autism couldn't possibly cover everything Seth has to share and that you need to know. If you're short on time, read The Panic Virus's harrowing first five pages, in which an intentionally unvaccinated child nears death from the vaccine-preventable disease Hib. And in my opinion the first 20 pages, which map out misinformation-based vaccine fears' rise and consequences, should be shared by every pediatrician in the country (if you have an iPad, you can download The Panic Virus's first section as a free preview).
Why did our culture fall so hard for vaccine misinformation? Why did that misinformation proliferate? Mr. Mnookin blames the media, for fanning vaccine fear flames without bothering to determine the fire's source. For allowing celebrities to showcase false minority viewpoints as unchallenged truths. As E.B. White's Charlotte the Spider said, "People believe almost anything they see in print," and her statement can be upgraded to "anything they see on TV" as well. Gullibility regarding media is more pervasive than you might think; when I talked with AAP spokesperson Dr. Ari Brown, she said that even grandparents who have seen the effects of vaccine-preventable diseases first hand place faith in what Oprah and her guests say over their own experience.
Unsurprisingly, Mr. Mnookin blames the Internet, too. As he writes,
"The anonymity and lack of friction inherent in the online world also mean that a small number of committed activists -- or even an especially zealous individual -- can create the impression that a fringe viewpoint has broad support." [p.198]There's also our culture's lack of scientific curiosity. Mr. Mnookin takes great care to point out how writers like David Kirby, author of the information-warping mercury-causes-autism book Evidence of Harm, have taken advantage of a cultural willingness take accusations at face value. Kirby exploited the fact that though no legitimate study has ever found a causal link between vaccines and autism, it is also not scientifically possible to prove that vaccines don't cause autism, just as it is impossible to prove that anything is completely safe. Kirby milked that scientific impossibility, cherry-picked quotes out of context, included whatever statements fit his message and ignore any evidence that didn't -- and patchworked it all into a lumbering Frankenstein of persuasive misinformation. Reading exactly how Kirby perverted the facts in writing Evidence of Harm should give anyone pause.
Then there are the Wakefield denialists. The anti-vaccination blogs and believers still cry "Offit makes money off Rotavirus!" while lionizing Wakefield as their children's savior, even though, in Mnookin's examination of Brian Deer's 2004 The (London) Times series investigating Wakefield,
"Wakefield had not been a disinterested clinician while preparing his Lancet paper condemning the MMR vaccine; instead, he'd received multiple payments to examine children as part of a lawsuit that was being prepared against drug manufacturers. What's more, almost half of the twelve children in his study had been funneled to Wakefield by Richard Barr, the class action lawyer representing parents convinced that vaccines had injured their children. The most shocking revelation came later that year when Deer reported that shortly before his piece in The Lancet was published, Wakefield had filed a patent for a measles vaccine that could be administered independently of those for mumps and rubella -- which was just the product parents would be clamoring for if they became convinced that the MMR vaccine was more than their children's bodies could handle." [p. 236]I've never seen anyone from the autism anti-vaccination movement address these concerns, other than to say that some of the twelve children's parents still support Wakefield. Yes, well. In writing about Rochelle Poulter, the parent of "Child 12" who was asked not by Wakefield lawyers but by the prosecution to testify at Wakefield's "Fitness to Practice" GMC hearing, Mnookin writes,
"When the GMC ruled that Wakefield's actions had been 'contrary to the clinical interests of Child 12,' Rochelle Poulter was aghast. 'I insisted that the hearing be informed that I was completely happy with the treatment my son had received and that I did not have any complaint against any of the doctors,' she wrote in testimonial of her support. 'To this day I do not really know why I was asked to attend and give evidence.' Her confusion was typical of the willful incomprehension of Wakefield's supporters: As long as they had no grievance with Wakefield's methods, they felt any ethical violations he had committed in the course of treating their children should be ignored." [p. 301]Does this mean Mnookin thinks those who demonize vaccinations are stupid? No. He shows sincere empathy for other parents (he's a recent father), noting that "it's hard to unscare people." But he also doesn't flinch when describing how parents who have truly fallen for the anti-vaccine party line stay on message even when faced with contradictory evidence. The Cedillos, Wakefield devotees whose daughter Michelle was the first test case for the Autism Omnibus (vaccine injury) proceedings, refused to accept that Michelle's own medical records -- as examined during those hearings -- showed autism symptoms from infancy. (In our interview, Mr. Mnookin and I discussed how the Cedillos desperately needed tangible support -- and how Wakefield and his supporters gave it to them. This speaks to a greater need for support services for families of children with severe autism and comorbid conditions.)
The Panic Virus is important reading for those determined to be civil yet evidence-backed role models in an autism community that still includes a vocal vaccines-cause-autism minority. Mnookin's measured take is the antithesis of anti-science mercury-injury crusader J.B. Handley's war cries, e.g.,
"...anyone who repeats this lie [“It’s been asked and answered, vaccines don’t cause autism.”] is immediately my enemy. I mean that, I really do, because there are just too many kids in the mix and this is just too important and if you are either intellectually too lazy or too dishonest to understand the science around vaccines and autism, then, well, you are my enemy. Sorry, it’s a hard knock life."Whereas Mr. Mnookin spent years researching and subtantiating his statements, Mr. Handley hurls insults at anyone who disagrees with his time-and-again debunked "evidence." I'd remind Mr. Handley that, as E.B. White also wrote, "One of the most time-consuming things is to have an enemy," and that his considerable energies could serve our community best in positive ways, perhaps helping to found support networks for all people with autism in need, not just those whose parents agree with him.
As for Wakefield, his actions -- well-documented by Mnookin -- have resulted in global humiliation and the loss of his medical license. So while Wakefield refuses to back down or admit any wrongdoing, he's had to change course. He's now considering playing pied piper for a different set of autism families in need of support and answers, by targeting Minnesota Somali families of children with autism as a hyperbaric chamber proponent:
"So essentially Wakefield wants to use the Somali kids as more guinea pigs – as he did in his Lancet study – with the unproven and potentially dangerous therapy of hyperbaric chamber treatment for autism. According to the newspaper clipping, many parents have already signed up. And why wouldn’t they. There is no cure for autism, we don’t even know yet what combination of factors cause it. So of course desperate and vulnerable parents are only willing to agree to participate, even if it potentially puts their kids’ health at risk and in the knowledge that Wakefield is a fraud." -Maggie, at The Skeptic's Book of Pooh-PoohNIMH, the CDC, and Autism Speaks have teamed up to investigate what may be a higher than typical autism rate in this Somali community, but perhaps, as a Panic Virus coda, Mr. Mnookin could do a bit of investigative muckraking coupled with evidence inoculations in Minnesota?