The most obvious of these is the insistence by AutismOne’s founders that they promote a “pro-science” and not an “anti-vaccine” agenda, a claim that is hard to reconcile with the group’s mission statement: “The great majority of children suffering from autism regressed into autism after routine vaccination. . . . Autism is caused by too many vaccines given too soon.”2 If anything, the conference’s speakers have become more extreme as an ever-growing body of evidence disproves their claims: Included among the 150 presentations at the conference I attended was a four-hour-long “vaccine education” seminar, a lecture on “autism and vaccines in the US [legal system],” an environmental symposium on “the toxic assault on our children,” and a presentation on “Down syndrome, vaccinations, and genetic susceptibility to injury.” During her talk, Barbara Loe Fisher, the grande dame of the American anti-vaccine movement, explained how vaccines are a “de facto selection of the genetically vulnerable for sacrifice” and said that doctors who administer vaccines are the moral equivalent of “the doctors tried at Nuremberg.” (That parallel, she said, had been pointed out to her by Andrew Wakefield, in whose honor the 2009 conference was held.) One night, there was the premiere of a documentary called Shots in the Dark, which examined “current large-scale vaccination policies” in light of the “onset of side effects such as autism or multiple sclerosis.” This list could go on for pages.
If you assume, as I had, that human beings are fundamentally logical creatures, this obsessive preoccupation with a theory that has for all intents and purposes been disproved is hard to fathom. But when it comes to decisions around emotionally charged topics, logic often takes a back seat to what are called cognitive biases—essentially a set of unconscious mechanisms that convince us that it is our feelings about a situation and not the facts that represent the truth. One of the better known of these biases is the theory of cognitive dissonance, which was developed by the social psychologist Leon Festinger in the 1950s. In his classic book When Prophecy Fails, Festinger used the example of millennial cults in the days after the prophesied moment of reckoning as an illustration of “disconfirmed” expectations producing counterintuitive results:
Suppose an individual believes something with his whole heart; suppose further that he has a commitment to this belief, that he has taken irrevocable actions because of it; finally, suppose that he is presented with evidence, unequivocal and undeniable evidence, that his belief is wrong; what will happen? The individual will frequently emerge, not only unshaken, but even more convinced of the truth of his beliefs than ever before. Indeed, he may show a new fervor about convincing and converting other people to his view.3
In this light, another seeming paradox of the anti-vaccine movement—its extreme paranoia about ulterior motives on the part of anyone promoting vaccination combined with an almost willful blindness to the conflicts of interest of the profiteers in their midst—also makes more sense. In a speech delivered at eight in the morning of the first full day of the conference I attended, Lisa Ackerman, the head of a group called Talk About Curing Autism (TACA), ran through a long list of things parents “need” to do for their children, including testing for mineral deficiencies, installing water filtration systems, eating organic chickens, and throwing out all flame-retardant clothing, mattresses, and carpeting. “If you buy clothes and pajamas from Target and Wal-Mart, almost all of those have a flame retardant applied,” she said. “If you’re building or doing home improvement, that’s like the biggest toxic exposure you can give a child. New carpets are one of the worst things you can do. Sorry if you just did it.” Ackerman also talked about “supplementation [and] nutritional therapies,” including “vitamin B12 shots in the buttocks” and antioxidant IVs, and described a range of other alternative treatments, many of which were available from the eighty-plus vendors who’d set up shop in one of the hotel’s exhibition halls. (According to Ackerman, twenty-second treatments in one of the types of hyperbaric oxygen chamber for sale—“They’re not just for people like Michael Jackson; they’re really cool!”—had transformed her son from a “caveman” into a verbal child capable of having normal conversations.)
The following afternoon, the father-son team of Mark and David Geier stood on stage in the same lecture hall for the first of their two presentations on “New Insights into the Underlying Biochemistry of Autism.” The most recent insight of the Geiers, who’ve been stalwarts of the anti-vaccine movement for decades, involved a treatment called the “Lupron protocol,” which is based on a theory so odd it sounds like a joke: Autism, the Geiers were claiming, is the result of a pathological reaction between mercury and testosterone, and Lupron, an injectable drug used to chemically castrate sex offenders, is the cure. Before determining whether patients are candidates for their “protocol,” the Geiers order up dozens of lab tests at a cost of more than $12,000. The treatment itself, which consists of daily injections and bimonthly deep-tissue shots, can run upward of $70,000 a year. It also is excruciatingly painful. (In an article in the Chicago Tribune, an acolyte of the Geiers’ described giving a shot to one child: “His dad is a big guy like myself, [and] it took both of us to hold him down to give him the first injection. It reminded me of . . . a really wild dog or a cat.”) At the time of the 2009 conference, the Geiers had already opened eight Lupron clinics in six different states. Mark Geier, who calls Lupron a “miracle drug,” told a reporter that was just the beginning of their expansion aspirations: “We plan to open everywhere.”4
Outside the conference rooms of AutismOne and without a child suffering from the disorder, it can be hard to fathom how something as bizarre as Lupron ever gains momentum. But when you watch the transaction happening in real time it’s not hard to understand its appeal. “If someone like Mark Geier comes up to you at a conference, and he’s got twenty impressive PowerPoint slides, and he’s got a Ph.D. and a long string of letters after his name, you’re going to listen to him because you’ve been taught that someone like that is someone who knows what he’s talking about,” says Kevin Leitch, a British blogger and the parent of an autistic child. “And if this same parent reads in The Guardian or the London Times or The New York Times that a new study has been published in Science about a gene that might be associated with 15 percent of cases of autism, hooray. They look at that and think, ‘Screw that. One of them is mildly interesting and the other gives me a load of hope.’ ”
The vast majority of parents, of course, don’t bring such strong predilections to the topic of vaccines. What parents do want is to protect their children from infectious diseases while also being conscientious and informed about what is being injected into their bodies. A lot of parenting decisions come down to our gut reactions—science can’t tell us what’s an appropriate curfew for a sixteen-year-old or whether it’s better to indulge or resist a child who says he wants to quit violin lessons—and when it comes to vaccines, most of the “commonsense” arguments appear to line up on one side of the equation: Vaccines contain viruses, viruses are dangerous, infants’ immune systems aren’t fully developed, drug companies are interested only in profit, and the government can’t always be trusted. The problem, as psychologist and Nobel laureate Daniel Kahneman and his longtime research partner Amos Tversky demonstrated in a series of groundbreaking papers in the 1970s, is that in many situations regarding risk perception and data processing, “commonsense” arguments are precisely the ones that lead us astray.5 Because the risks associated with foregoing vaccines feel so hypothetical, and because the infinitesimally remote possibility that vaccines could hurt our children is so scary, and because there’s nothing in our daily experience to indicate that a little fluid administered through a needle would protect us from a threat we can’t even see, it’s very hard for parents working by intuition alone to know what’s best for their children in this situation.
This leaves us with two choices: We can either take it upon ourselves to do a systematic analysis of all the available information—which becomes ever less fe
asible as the world grows more complex—or we can trust experts and the media to be responsible about the information and advice they provide. When they’re not, whether it’s because they’re naive or underresourced or lazy or because they’ve become true believers themselves, the consequences can be severe indeed. A recent Hib outbreak in Minnesota resulted in the deaths of several children—including one whose parents said they do not “believe” in vaccination. In 2009, there were more than 13,000 cases of pertussis (more commonly known as whooping cough) in Australia, which is the highest number ever recorded. Among those infected was Dana McCaffery, whose parents do believe in vaccination, but who was too young to get the pertussis vaccine. She died when she was thirty-two days old. Six months later, Dana’s mother got an e-mail from a woman in Dallas, Texas, named Helen Bailey. Bailey was looking for someone who might understand her grief: Her son, Stetson, died of pertussis when he was just eleven weeks old. If anything, the situation is getting even worse: In 2010, a yearlong pertussis outbreak in California was so severe that in September some foreign governments began warning their citizens of the dangers of traveling to the region.
Then there’s measles, which is the most infectious microbe known to man and has killed more children than any other disease in history. A decade after the World Health Organization (WHO) declared the virus effectively eradicated everywhere in the Americas save for the Dominican Republic and Haiti, declining vaccination rates have led to an explosion of outbreaks around the world. In Great Britain, there’s been more than a thousandfold increase in measles cases since 2000. In the United States, there have been outbreaks in many of the country’s most populous states, including Illinois, New York, and Wisconsin. A recent outbreak in California began when a grade-schooler whose doctor supports “selective vaccination” was infected while on a family vacation in Europe. In an anonymously published article in Time magazine, that child’s mother said she “felt safe in making the choice to vaccinate selectively” because she lives in “a relatively healthy first-world country” with a well-functioning health care system. “Looking at the diseases mumps, measles and rubella in a country like the US . . . it doesn’t tend to be a problem,” she said. “Children will do fine with these diseases in a developed country that has good nutrition. And because I live in a country where the norm is vaccine, I can delay my vaccines.”
That statement could not be more false. Measles remains deadly regardless of whether you live in the United States or in Uganda. (Before the MMR vaccine was introduced, its annual death toll in the United States reached into the hundreds, and each year rubella infections resulted in more than twenty thousand infants who were born blind, deaf, or developmentally disabled.) This mother’s conviction also perfectly encapsulates one of the most vexing paradoxes about vaccines: The more effective they are, the less necessary they seem.
On the fourth morning of Matthew Lacek’s coma, a doctor told his parents that he appeared to have stabilized from the drop in his blood pressure the day before. There was a chance, the doctor said, that the antibiotics were winning the fight against the infection that had taken over Matthew’s body—but there was no way to know for sure until he woke up. For the rest of the day, Kelly and Dan sat by their son’s bedside. Late that afternoon, he began to breathe on his own—slowly at first, but then more regularly. It was getting dark outside when he blinked open his eyes. The first words out of his mouth were, “I want to go potty.”
In April 2010, about a year after we first spoke, Kelly Lacek e-mailed me a picture of Matthew and his older brother, chins in hand, posing for the camera like a pair of tough guys. “We just celebrated [Matthew’s] 7th birthday,” she wrote. “It takes everything for me not to cry each day, let alone his birthday. We are so blessed to still have him. He had strep throat 4 times since January and each time his tonsils swell up, [he gets a] high fever and my husband Dan and I are reminded of that day.” Kelly told me about her sons’ Little League games and how much the whole family loves board games and sitting around campfires. “I hope that helps, Seth,” she wrote. “Please let me know if you need anything else. . . . [It’s important] to make sure families are making the right decisions, based on fact and not by fear or misinformation.”
1 This character, and the subsequent conversation, is drawn from an amalgam of discussions I had over a period of several months. These quotes represent my best recollection; as a rule, I try to avoid taking notes during dinner parties.
2 The term “anti-vaccine” has been the subject of extremely contentious disputes. Throughout the book, I have used it to describe groups or individuals whose efforts to discredit vaccines depend on claims that are not supported by, and in many cases are directly contradicted by, the available scientific evidence. It’s worth noting that activist groups have been largely successful in pressuring the media to adopt a standard that relies on these groups’ own beliefs about what qualifies as being “anti-vaccine.” A correction that appeared in The New York Times in April 2010 is an example of this: “A picture caption on Tuesday . . . referred incorrectly to the rally in Washington in 2008 at which the actors Jenny McCarthy and Jim Carrey were shown. Participants were calling for the elimination of what they said were toxins in children’s vaccines and for a reassessment of mandatory vaccination schedules for children; it was not ‘an anti-vaccine’ rally.” (Emphasis added.)
3 One of the case studies on which Festinger based his theory focused on Dorothy Martin, a housewife and former follower of L. Ron Hubbard’s Dianetics movement. Martin claimed that inhabitants of the planet Clarion had told her that Chicago would be destroyed in a flood just after midnight, early on December 21, 1954. Festinger and his colleagues observed Martin’s followers as they quit their jobs, left their spouses, and gave away their money in preparation for their rescue by a flying saucer. By 4:45 a.m. on the morning of the 21st, Martin and her disciples had to acknowledge that Chicago was not underwater and that they had not been rescued by aliens. At that point, Martin received a new message: The apocalypse had been canceled. As Festinger wrote, “The little group, sitting all night long, had spread so much light that God had saved the world from destruction.”
4 Over the course of more than two decades, judges have ruled that Mark Geier’s expert testimony in vaccine-related lawsuits was “below the ethical standards” required of lawyers, “intellectually dishonest,” and “not reliable, or grounded in scientific methodology and procedure.” The Geiers counter such criticism by insisting that there are mainstream scientists who support their work. One person they’ve cited is a British clinical psychologist named Simon Baron-Cohen. When the Chicago Tribune asked Baron-Cohen about the Geiers’ “protocol,” he said that administering Lupron to autistic children “fills me with horror.”
5 Virtually anything having to do with technology provides a good example of how often commonsense assumptions end up being wrong. Think about how recently it would have sounded ludicrous to propose that an invisible worldwide communication network would be capable of beaming movies into a device smaller than a deck of cards, or that shooting lasers into people’s eyeballs could improve their sight. Politics is also an area in which the fantastical has a way of becoming reality: Twenty years ago, a scenario in which the Terminator was elected governor of California would have seemed possible only in a science fiction movie.
Part One
CHAPTER 1
THE SPOTTED PIMPLE OF DEATH
To understand the roots of modern-day fears of vaccines, it is necessary to understand vaccines themselves, and to do that requires us to look back briefly at the deadly diseases they protect against. The most consequential of these is smallpox. In the three thousand years since the first recorded smallpox epidemic in 1350 B.C., no virus has affected humanity more profoundly than Variola vera—a term that comes from the Latin for “spotted pimple.” (The term “smallpox” was coined in the fifteenth century in an effort to distinguish Variola from syphilis, which was known as “the great pox.”) Sma
llpox’s telltale scars mark the mummified face of Ramses V, an Egyptian pharaoh who died in 1157 B.C. The Plague of Antonine, with a death toll of between three and a half and seven million, hastened the decline of the Roman Empire. The collapse of the Aztec and Incan kingdoms was expedited by the introduction of smallpox by Old World conquistadors. In eighteenth-century Europe, 400,000 people a year died from smallpox, and those who survived accounted for a third of all cases of blindness on the continent. Between 1694 and 1774, eight reigning sovereigns—Queen Mary II of England, King Nagassi of Ethiopia, Emperor Higashiyama of Japan, Emperor Joseph I of Austria, King Louis I of Spain, Czar Peter II of Russia, Queen Ulrika Eleanora of Sweden, and King Louis XV of France—died of the disease; the Habsburg line of succession changed four times in four generations because of smallpox deaths.
The virulence of smallpox brought about the first attempts at inoculation, which medical historians estimate occurred more than two thousand years ago in the Far East, although the earliest known records are from eighth-century India. In either case, it wasn’t until the eighteenth century that the practice spread to the West: In 1717, Lady Mary Wortley Montagu, the wife of the British ambassador to the Ottoman Empire, was amazed to discover that “the small-pox, so fatal, and so general amongst us is here entirely harmless, by the invention of ingrafting”—a crude and painful process by which pus from an individual with a relatively mild case of the disease was spread on an open wound of an as yet uninfected person. Contrary to Montagu’s enthusiastic claim, however, inoculation—which was also known as variolation, in honor of the disease it sought to combat—did not render smallpox entirely harmless: Inoculees still got sick; that, after all, was the whole point of undergoing the procedure in the first place, since a bout of smallpox was the only known way to achieve lifelong immunity. What’s more, even though an inoculation-induced case of the disease was usually less severe than one resulting from a natural infection, there were still those who became alarmingly ill and even died. Montagu, who’d lost a brother to smallpox, clearly considered those risks worth taking, and she successfully inoculated her five-year-old son while still in Constantinople and her four-year-old daughter shortly after arriving home. In London, her doctor was given permission to test the procedure on a half-dozen prisoners who’d been condemned to hang. All six survived—and were eventually granted their freedom. (Authorities in Georgian-era England might not have been overly concerned with prisoners’ rights, but they apparently did have a sense of fair play.) Within a year, the Prince of Wales, mindful of the fate that had befallen so many of his royal contemporaries, had inoculated his own daughters.
The Panic Virus Page 3