VACCINE RISKS AND THE NEW MEDIA
The headline was damning:
“THE LETHAL DANGERS OF THE BILLION-DOLLAR VACCINE BUSINESS:
With Government Approval, Drug Companies Sell Vaccines That Can Leave Your Child Brain Damaged, Can Spread Polio From Your Baby To You—And Can Even Kill.”1
Ten years after Congress passed the National Childhood Vaccine Injury Act, Money magazine—no enemy of the vaccine industry—reported that while vaccines saved lives, Americans still had plenty of reasons to be wary about them. DPT shots still caused brain damage and deaths, the magazine reported, and vaccine makers were holding out on a safer version. The polio vaccine was now the only cause of the disease in the United States, and to make things worse, the shot might be causing cancer and other chronic diseases, too. According to the reporters at Money, health officials were systematically downplaying vaccine risks, medical experts with industry ties were setting policies that padded drug companies’ bottom lines, and parents were in the dark about all of it.2
The charges were, in effect, a compilation of the vaccine complaints of the previous two decades, from mothers’ concerns that doctors were withholding vaccine-safety information to Clinton officials’ charges that drug companies were putting profits ahead of people. More importantly, however, the article signaled the beginning of a trend that would take off at the turn of the millennium, when reports about vaccine dangers became a regular feature in the news. At first, this media coverage was event-driven and diverse. Stories covered the reported side effects of the hepatitis B vaccine; the dangers of vaccinating against smallpox in post-9/11 America; the risks and benefits of flu vaccination; and societal concerns about the use of a new vaccine against human papillomavirus, or HPV. Over the course of the decade, however, one vaccine-safety story gradually supplanted all others: the story of the relationship between autism and vaccines.
Vaccine-safety activists had long argued that immunization had the potential to affect the immune and nervous systems in ways that might, in some cases, cause autism.3 In the 2000s, the theory that vaccines caused or contributed to autism gained unprecedented visibility and momentum. Parents, doctors, health experts, lawyers, and journalists examined the theory and picked it apart. The timing was no accident: parents and scientists alike were trying to understand why childhood autism was on a rapid and startling rise. Health and medical experts quickly concluded that there was no link between autism and vaccines. But in the years after they issued their verdicts in the early 2000s, the link only gained more and more attention in the press.
Why did the vaccine-autism story stick around in the news, long after vaccines had been scientifically exonerated as a cause of the condition? As this chapter shows, both journalists and public health experts had a number of reasons for keeping the story afloat. As the new millennium began, vaccines were controversial for a variety of reasons. By consistently pointing out that the question of vaccines’ connection to autism had been settled by scientists, however, health officials kept the controversy “within the confines of their scientific and technical expertise.”4 In effect, as historian Mark Largent has shown, keeping the spotlight trained on disproven autism fears allowed health experts to ignore parental vaccine worries that had nothing to do with science. But keeping the vaccine-autism link visible served other public health purposes as well. The majority of media reports referenced the debated link only to refute it.5 The typical news story reported that parents afraid of autism (generally mothers) weren’t vaccinating their kids, and were therefore responsible for the intractability of, and even increases in, vaccine-preventable diseases. This narrative highlighted the importance of listening to science, reason, and experts. It also highlighted a moral duty to vaccinate for community, not just individual, benefit. And it obviated explanations of the complicated and poorly understood scientific reasons for the persistence of vaccine-preventable diseases, despite record-high vaccination rates.
The vaccine-autism link also served a number of journalistic purposes. For journalists under new pressures in a changing media environment, “debate” over the link was a ready source of conflict and tension. It was an easy explanation for the reportedly inadequate vaccination rates behind ongoing outbreaks of vaccine-preventable diseases. It perfectly suited the mass media’s role as watchdog for a risk-obsessed society. And it was an appealing attention-getter because it fed upon an abundance of preexisting cultural tensions: over competing claims to expertise between mothers and scientists, about epidemics of disability in children, about chemical contamination of humans and the environment, and about industry and government’s perceived failure to protect the public from harm. The debate was a product of the more diffuse set of worries that had begun boiling over in the late 1990s, those itemized by Money magazine and a series of exposés, large and small, that got airtime at the end of the millennium. But as the 2000s progressed, the media’s tight focus on vaccine-autism fears swept these more diffuse worries under the rug, and ignored the value disputes and cultural battles that lay at their foundation.
MOUNTING SKEPTICISM
At the end of the 1990s, a series of events made vaccine-safety stories a fairly regular feature in the papers and on the evening news. The stories pointed to haste among policy makers, suggested inadequate testing by drug companies, and indicated that even vaccines long assumed to be safe might cause harm in insidious ways.
A new vaccine against rotavirus, a diarrheal disease, garnered such attention. In late August 1998, Wyeth Laboratories’ new RotaShield vaccine was licensed for use in infants. Six months later, in March 1999, the ACIP recommended that the three-dose vaccine be given to all infants at ages two, four, and six months. But CDC scientists monitoring the Vaccine Adverse Event Reporting System soon noticed an unusually high number of cases of intussusception, a painful and potentially fatal bowel obstruction, in children who had received the vaccine.6 Wyeth stopped making the vaccine, and the CDC recommended that parents and pediatricians stop giving it to children. In July 1999, the news made for worrying headlines and evening news stories.7 When the ACIP met and reviewed the data in October of that year, they issued what one veteran medical reporter called “a rare and embarrassing reversal,” recanting their earlier recommendation that all infants be immunized against the disease.8
Further chagrin for vaccine scientists came later that same year, with the publication of The River by British journalist Edward Hooper.9 Hooper’s massive work painstakingly buttressed a theory, circulating since the eighties, that polio vaccine trials conducted in the fifties had caused the AIDS epidemic. His analysis compellingly suggested that an oral polio vaccine developed using chimpanzee tissue transmitted HIV’s simian precursor virus to humans when it was tested on populations in Burundi, Rwanda, and Congo, home to the earliest documented HIV infection, in 1959. The hypothesis triggered a firestorm of debate among scientists. But even experts skeptical of the hypothesis praised the book, in such scientifically revered publications as Science and Nature.10 In the popular press, meanwhile, one reviewer called The River an “embarrassment” for scientists, since it revealed “that leading researchers kept sloppy records and that prestigious peer-reviewed medical journals published reports that omitted crucial details.”11 Said another, “It could be the biggest ‘Oops!’ in history.”12 The book’s reception gave credence to the notion that vaccines were not just fallible in minor, insignificant ways, but could very well be implicated in the nation’s most devastating epidemic in decades.
Hooper’s hypothesis was just one more tremor shaking the foundation on which public confidence in vaccines stood in the late nineties. It followed on the FDA’s announcement that thimerosal would be removed from vaccines, and it coincided with congressional hearings on hepatitis B vaccine side effects. It also coincided with a revision to the childhood immunization schedule based on a reassessment of the risks and benefits of polio vaccine—yet another news item that drew attention to vaccine hazards. The ACIP and the American Academy of Pediatrics announced that children should now get four polio vaccine injections, instead of the two injections and two oral immunizations they previously received.13 Although oral polio vaccine (Sabin’s vaccine) was more protective against disease, it had been the sole cause of poliomyelitis cases—144 of them—in the United States since 1979. Given the progress of global campaigns to eradicate polio beyond the United States’ borders, the ACIP concluded that the more effective but riskier vaccine was no longer justified.14 Vaccination recommendations always rested on a comparison of risks and benefits, but this time the adjusted calculus made headlines and overlapped with the negative attention that Hooper’s book had brought to polio vaccines.15
Longtime vaccine critics kept tabs on each new piece of bad news. Late in 1999, the editors of Mothering noted that the year had been marked by a “flurry of activity regarding the safety, ethics and politics of vaccines”: the withdrawal of RotaShield, the FDA’s thimerosal announcement, the replacement of oral polio vaccine with injected polio vaccine, and the CDC’s “suspension” of hepatitis B injections for low-risk infants.16 This time, however, Mothering wasn’t the only media outlet tallying the nation’s vaccine troubles. ABC Evening News took a “closer look” at the “hidden dangers in vaccinations,” while the news team at CBS reported on the growing number of vaccines recommended for children and the troubling side effects that sometimes followed.17 The front page of the San Francisco Chronicle described an “outbreak of mistrust toward vaccination,” and the front page of the Philadelphia Inquirer declared that vaccines were “under siege” for countless reasons. Recommendations for new vaccines, like those against hepatitis B and rotavirus, kept being readjusted because of safety concerns. Soldiers argued that vaccines were in part responsible for Gulf War syndrome. Parents were worried that vaccines were causing conditions such as autism, multiple sclerosis, and SIDS. And new evidence kept turning up to suggest that Americans’ vaccine worries were justified. Noted the Inquirer, “Public-health officials are afraid of what could happen next.”18
The sum total of this “flurry” of events and the media attention they attracted was not lost on immunization officials, who noted that at the turn of the millennium, the media, Congress, and consumers—a fast-growing number of them on the Internet—were all chattering about vaccine safety. In response, the CDC and the National Institutes of Health asked the Institute of Medicine (IOM) to convene a committee of impartial experts—lacking any financial ties to industry—to carry out an Immunization Safety Review project. At a series of meetings held between 2001 and 2004, the committee analyzed the nation’s most prominent vaccine-safety concerns: the purported link between vaccines and sudden infant death; flu vaccine and neurological complications; polio vaccines and cancer; hepatitis B vaccine and neurological disorders; vaccines and immune dysfunction; thimerosal and neurodevelopmental disorders; and MMR vaccination and autism.19 The IOM’s inquiry was broad, reflecting the diverse set of worries articulated by Americans at the end of the nineties. But as the committee’s findings were announced, journalists honed in on just one.
AUTISM FEARS
In the spring of 2000, the relationship between vaccines and autism was the subject of emotional and combative congressional hearings called by Republican Representative Dan Burton of Indiana, whose grandson developed autism after he received “nine shots in 1 day.” Parents of autistic children testified about their struggles to find treatment, the high costs of care and services, and their observations of the food allergies and “metal toxicities” that seemed to accompany their children’s behavioral symptoms. Epidemiologists and statisticians testified; so did federal health officials, autism advocates, vaccination advocates, autism researchers, pediatricians, physicians, and scientists engaged in the latest relevant research. Opinions on the plausibility of a link were sharply divided. To Burton, the growing number of vaccines and their ingredients were both very worrisome, and “research on the potential connection between vaccines and autism” deserved “top priority.” To Democrat Henry Waxman of California, who played a supporting role in the hearings, the hearings had been stacked in favor of a link between vaccines and autism. Waxman urged those assembled not to “get ahead of the science or raise false alarms.” As yet there was no scientific evidence supporting a causal relationship between vaccines and autism, he stressed, so “why should we then scare people about immunization until we know the facts?”20
At that point, the “facts” supporting a link came largely from a paper published by British gastroenterologist Andrew Wakefield, then of the Royal Free Hospital and University College Medical School in London, who also testified at the hearings. A study of twelve autistic children conducted by Wakefield and colleagues purported to have found a possible connection between MMR vaccination, measles virus in the gut, and the development of autism. MMR vaccine, the researchers proposed, caused bowel problems that hampered a child’s ability to absorb nutrients, thereby leading to developmental disorders.21 The study was published in one of the most prestigious medical journals in the world—the Lancet—but the scientific community was largely unimpressed by its findings. The American Medical Association, among others, pointed out that the study was based on a sample way too small for drawing grand conclusions. It also suffered from referral bias—that is, its subjects weren’t randomly selected. And its conclusions weren’t supported by its clinical observations: some of the children had behavioral problems before they had bowel problems. Moreover, a follow-up study by Wakefield’s colleagues failed to turn up any evidence of measles virus in the intestines of people with bowel disease.22
In the UK and Europe, Wakefield and colleagues’ 1998 study was nonetheless the subject of countless sensational headlines, and news of it helped push already declining measles vaccination rates further downhill.23 “Once again,” lamented a British epidemiologist, “the media have succeeded in denting parents’ confidence in childhood immunization.” In the 1970s, pertussis immunization in England had tumbled from about 80 to 30 percent following media reports of severe side effects; given the headlines about MMR, health experts braced for a repeat performance.24 In the United States, Wakefield may have been called before Congress in 2000, but his research had actually received only scant attention from the media. His 1998 study made for few headlines and evening news stories in 1998 and 1999; those media outlets that did report on it described it as “controversial” and “methodologically flawed.”25 In fact, the U.S. media gave more time and space to medical experts and research findings that refuted Wakefield’s findings, including a Finnish study that tracked 3 million doses of MMR vaccine given to children and did not find a single case of autism among them.26
Wakefield’s specific findings may have received limited and ambivalent attention from the media when they first came out in the late nineties. But generalized fears of a vaccine-autism link nonetheless permeated the growing number of media reports about autism, on the one hand, and vaccine risks and side effects, on the other. A profile of renowned autism expert Bernard Rimland in the San Diego Union Tribune, for instance, mentioned that Rimland believed epidemic autism might be caused by pollution—a term he defined widely enough to include industrial pollution, food additives, and overused pharmaceuticals, including vaccines.27 Stories about children living with autism—which became increasingly common as more and more children were diagnosed with the condition—often quoted parents who speculated that their children’s autism was brought on by vaccines.28
While vaccine worries cropped up in articles about autism at the century’s end, autism worries appeared in reports on vaccines and vaccine policy. Stories on parents who eschewed chicken pox vaccine, or those who wanted their states to permit philosophical exemptions to school vaccine requirements, quoted parents saying they worried that vaccines caused SIDS, hyperactivity, ADD, and autism.29 When media reports insisted there was no evidence to support “a well-publicized contention” that the MMR vaccine caused autism, readers wrote in with their objections. “Insulting the immune system” with vaccines could cause autism, Guillain-Barré syndrome, and other autoimmune diseases, wrote a registered nurse to the Albany Times Union. “Research has implicated the DPT, MMR, and hepatitis B vaccines in the rising number of autism cases,” wrote a New Jersey man to the Newark Star-Ledger. “A child became autistic directly after an MMR injection,” warned an Erie, Pennsylvania, woman in a letter to the local Times-News.30
Despite today’s claims that Wakefield’s 1998 study was single-handedly responsible for fostering parental fears of a vaccine-autism link, such fears didn’t originate with Wakefield.31 If anything, his now-infamous study was a product of parents’ worries, not the other way around.32 Speculations that vaccines might cause autism weren’t new at the end of the 1990s; they had been around since at least the early 1980s, as noted in chapter 6. On the other hand, widespread fears of autism generally were new at the turn of the millennium, because the condition seemed to be spreading quite suddenly out of control. In the late 1980s, autism affected 1 in 10,000 children. In 2001, studies estimated that it affected as many as 1 in 500, with prevalence projected to climb even further.33 Scientists called the rise “baffling” and “mysterious.” In California, where the increase was particularly acute, researchers studying the trend confessed that they had no idea what was behind it. Genes were known to play a part in the development of autism, but genetics alone couldn’t explain such a rapid rise. Nor could publicity, despite suggestions that the 1988 film Rain Man, which featured an autistic character played by actor Dustin Hoffman, had fueled autism awareness. And studies showed that neither diagnostic nor demographic changes could fully account for the increase, either. “Experts believe that environmental factors can trigger autism in people with susceptible genes, with suspicions falling at various times on vaccines, infections, heavy metals and other environmental insults,” reported the New York Times in 2002. “It could take years of study to unravel the widening mystery of autism.”34
AUTISM REPORTING AND MOTHER WARRIORS
The IOM committee took on the feared link between MMR vaccine and autism as its first order of business, convening a meeting in March 2001 and releasing its conclusions a month later. Looking closely at the existing research, the scientists on the panel didn’t find much to implicate the MMR vaccine, but they did find much to exonerate it. To begin with, the MMR vaccine was licensed long before prevalence of autism spectrum disorders began to climb. Eight different epidemiological studies showed no association between MMR vaccination and autism. These studies didn’t definitively disprove a causal relationship, but at the same time, the single study suggesting a link between vaccines and autism—Wakefield’s study—failed to prove a causal relationship. Epidemiological evidence aside, there was also no good biological model to explain how MMR vaccines could contribute to autism, in either lab animals or humans. The likelihood of a causal relationship, the committee concluded, seemed remote.35
In 2004 the IOM committee revisited the connection between vaccines and autism, in order to take into account the most recent research. This time, they reported that they had found no support for a causal relationship between the two.36 Media reports had adopted a reassuring tone when the IOM released its 2001 report: “Parents worried about the potential links between one of the most common [vaccines] and autism can rest easier tonight,” said network news anchor Tom Brokaw.37 But the tone of media reports on the occasion of the IOM’s 2004 findings reflected a noteworthy shift. Some reports were defensive. On 60 Minutes, CDC immunization adviser and pediatric infectious disease specialist Paul Offit not only disputed the vaccine-autism link; he emphasized that vaccines were “without question, the safest, best-tested thing we put into our bodies. . . . [T]hey have a better safety record than vitamins, a better safety record than cough-and-cold preparations, a better safety record than antibiotics.”38 Still other reports suggested that scientific assurances were now beside the point. While scientists say it’s “clear” that vaccines don’t cause autism, said NBC news reporter Robert Bazell, “for some parents, the doubts will always linger.”39 Scientific conclusions, reassuring in 2001, were now no salve for parental fears. The vaccine-autism story, clearly, would not be put to rest. In fact, it only became more prevalent as the decade progressed. U.S. newspapers mentioned the link four hundred times in 2001 and more than three thousand times in 2009. And there were five times the number of evening news stories on the link in 2010 than there had been in 2001.40
A number of events helped keep the story in the news. Studies large and small continued to investigate the relationship between vaccines and autism, and a few endorsed the plausibility of a link.41 Wakefield and his study became news fodder as various conflicts of interest were uncovered and his coauthors withdrew their support for the study; soon after, he was found guilty of misconduct, stripped of his medical license, saw his study retracted from the Lancet, and made a new home for himself among supporters in Austin, Texas.42 The continuing spread of autism did its part, as well. In 2005, autism prevalence rose to 1 in 166 children. A year later, it rose again, to 1 in 110; two more years later, it climbed further still, to an unfathomable rate of 1 in 88.43
All the while, parents continued to suspect vaccines. In part, this was likely due to the fact that the media didn’t let go of the story; scholars have shown that public concern about a risk increases as news coverage of the risk increases—no matter how small, or unproven, that risk may be.44 Moreover, as vaccine worries were being amplified in the news, the rise of the Internet created yet another forum for parents’ suspicions to circulate and gain momentum.45 Americans in the early 2000s were flocking to the Internet for all sorts of reasons, including the quest for health and medical information.46 Physicians and health experts lamented that patients’ web research was changing the traditional office visit, and not for the better.47 But for the parents of autistic children, the online world was a limitless source of information that empowered them to understand and manage their children’s needs. A couple in Massachusetts said they spent five hours a day researching autism tips online.48 A California mom connected with other parents of autistic children online and learned about their successes and failures.49 Still others went online to diagnose their own children: “[We] put [the kids] to bed and then got on the Web to do the research,” said a mother in Illinois. “By the end of the night, we knew [our son] Weston had autism.”50
The web also gave such parents plenty of reasons to worry about vaccines. In the late 1990s, fledgling autism sites, such as Unlocking Autism and the Autism Autoimmunity Project, noted that vaccines’ effects on the immune system could lead to “profound neurological damage,” including autism—a connection Andrew Wakefield had “discovered.”51 As time progressed, autism sites not only summed up the evidence supporting a link between vaccines and autism; they also gave parents instructions on how to reduce the risk of vaccine harm. Avoid vaccines with thimerosal, they instructed, and make sure children weren’t deficient in vitamin A. Give kids a dose of vitamin C before and after getting vaccinated, they advised, space out vaccines so children didn’t receive them all in one day, and opt for separate shots against measles, mumps, and rubella in place of the combined MMR vaccine.52
Information about the connections between vaccines and autism multiplied and spread like wildfire on the Internet—just as all information did. At the end of the decade, the CEO of Google estimated that humans were creating as much information in two days as they had since the appearance of Homo sapiens through 2003.53 The abundance of information online—and the countless hours that parents of autistic children spent combing through it all—led autism advocate (and model, television personality, and author) Jenny McCarthy to joke that she “should have a doctorate in Google research.”54 McCarthy began writing popular books about pregnancy and motherhood while pregnant with her son Evan, born in 2002; when Evan was diagnosed with autism two years later, the focus of her work changed. Her 2007 best seller, Louder than Words, detailed the trials of seeking treatment for Evan: the frustrations of dealing with the health care system, the doctors who belittled her concerns and dismissed her observations, the friends who couldn’t sympathize, even the spouse who pulled away.55 Only the Internet offered answers and support twenty-four hours a day, seven days a week. Online and through other mothers, McCarthy said she discovered the treatments, therapy, and dietary changes that helped pull her son out of his autistic world.
For parents like McCarthy, the Internet was an invaluable source of community; it was also a powerful tool for creating and disseminating “experiential knowledge,” the form of knowledge production cultivated by the women’s health movement three decades before.56 In the late seventies, the feminist authors of Ourselves and Our Children had lamented that modern parents were “separated from the accumulated wisdom of other parents,” a fact that “deepens our dependence on experts”; this was precisely the problem their book and others like it were designed to address.57 Three decades later, the Internet provided access to a collective wisdom that was a health feminist ideal, in many ways. Science and medicine had few answers or solutions for the parents of autistic children, but in one another they found abundant expertise, shared across cultures and time zones. Each valuable piece of advice was profoundly treasured, simultaneously deepening the sense that shared lay wisdom was invaluable—and expert wisdom flawed. It was a sentiment McCarthy expressed repeatedly, as when another mother told her about treatment regimens that could free Evan from autism: “Why didn’t they tell me all this at the doctors’ office?” she bemoaned.58
McCarthy and parents like her may have been empowered by the experiential knowledge they shared, but in encounters with health care experts they still found themselves dismissed. “Sometimes mothers instinctively know what works and what doesn’t, but the doctor wasn’t interested in hearing anything I had to say,” noted McCarthy. “It’s amazing how easily medical staff ignores crying, yelling mothers.”59 McCarthy wasn’t alone in feeling this way. She recounted being thanked by thousands of parents who felt abandoned and belittled in pursuit of treatment for their children; she dedicated her next book, Mother Warriors, to them.60 Mother Warriors was dedicated to all parent “warriors” fighting on behalf of their autistic children, but here and elsewhere, mothers were, once again, the primary caretakers of children and the ones uniquely frustrated by health care professionals who disparaged their expertise. “I would just say to the pediatricians, listen to [mothers] sometimes and give us a little bit more respect,” said Holly Robinson Peete, actress, autism advocate, and mother of an autistic son. “Our gut is really dead on.”61 Peete made her plea in an appearance on Oprah. Across the media—in particular in media targeting women—the fight for answers to autism was portrayed as a mother’s fight, and a fight that only mothers could truly understand.62
Media representations of the autism epidemic, in short, pitted mothers against experts and institutions that didn’t listen to them and showed them little respect. Not surprisingly, a similar representation appeared in media coverage of the autism-vaccine link. McCarthy’s own autism advocacy quickly turned into a vaccine-safety crusade, when she concluded that Evan was born with an immune deficiency that was aggravated by vaccines and contributed to his autism. “I am not a doctor, and I am not trying to tell you how to treat your child,” she wrote. “But . . . I feel it’s good to be aware of the dialogue surrounding a possible link between vaccines and autism.”63 On Larry King Live, McCarthy appeared as the sole woman and vaccine critic in a panel discussion on autism. She argued with an all-male panel of health experts over vaccine-safety testing, the number of shots, and pharmaceutical companies’ undue influence.64 Gendered contestations of vaccine risks weren’t limited to late-night cable news. On a PBS Frontline episode titled “The Vaccine War,” groups of mothers described their vaccine hesitations to a male reporter. Vaccine advocates in the film weren’t all male, but vaccine fears, it was clear, belonged to a domestic, feminized sphere while rationality and vaccine confidence resided in the masculinized professional domain.65 Throughout the 2000s, McCarthy kept asking experts to “listen to what the moms are saying”—but the message across the mainstream media was that while mothers were permitted to speak, if they said anything that cast doubt on vaccines, then what they were saying was simply wrong.66 The vaccine debate had become a gender war—and that was good for ratings.
RATINGS AND RISK
McCarthy aired her views in numerous high-profile media appearances, including interviews with Oprah Winfrey, Diane Sawyer, Ellen DeGeneres, and the hosts of The View.67 Three years after the IOM had refuted the claim that vaccines caused autism, McCarthy’s celebrity made her take on the matter newsworthy and helped keep the vaccine-autism story alive. Her cause was much broader than the contested link between vaccines and autism, but her media appearances typically served to forge that very link. When, for instance, she appeared on Larry King Live in 2008 and again in 2009, she debated pediatricians and health experts on the subject of childhood vaccines, even though the occasion for her appearance was World Autism Day, both times.68
The dialogue on Larry King partly concerned whether vaccines “contributed” to autism, but it was also about much more than that. The invited health experts denied that vaccines caused autism and stressed the ever-present dangers of the diseases they prevented, including polio, measles, diphtheria, and whooping cough. McCarthy railed against corrupt drug companies and complicit doctors, arguing that too many unsafe vaccines were being forced on children in the name of profit, causing new epidemics in misguided attempts to control overblown ones. The heated and testy conversations on occasion devolved into shouting matches. Debates, of course, are newsworthy; harmonious agreement is not. And newsrooms were, arguably, more in need of debates than ever as the 2000s progressed. The advent of cable, the Internet, and multimedia conglomerates had completely reshaped the news media. Ownership of media outlets had become increasingly concentrated, but at the same time audiences had fragmented, dispersing to hundreds of cable and online sources of news and information. News outlets, as a result, were “losing audience” and under tremendous pressure to keep viewers and readers. It was a “seller’s market for information,” concluded one report on the changing state of the media.69
The debate over the vaccine-autism link was good for ratings and readership precisely because it was so heated, so emotional, and so relevant to contemporary autism concerns. News reports that covered the debate or simply made reference to it found in it a ready source of tension and drama. On the one side stood doctors and public health experts talking about evidence. On the other side stood parents (and sometimes politicians) talking about personal observations, struggles, and beliefs. The debate was also a ready source of an emotional and widely relatable plight: the parent struggling to care for her child as best as she could. Often, as the media reported on scientific findings—another study showing no link between vaccines and autism, another piece of evidence discrediting Wakefield—the news was delivered over images of a parent holding a crying child as a needle slipped into his arm, or over images of autistic children rocking, banging their heads, or flapping their arms as they played alone, their parents powerless to reach them.70
On a deeper level, the debate also evoked tension because it wasn’t just about science or medicine—it was a contest of values. Its core features included disagreements over the nature of evidence, the battle between reason and emotion, and impossible-to-settle disputes over the kinds of risks that parents should assume and the kinds they should avoid. These themes had deep cultural resonance—as did the trends and stereotypes with which they connected.
The battle between reason and emotion, or irrationality, was one of the most prominent themes in reporting on vaccination and autism in the later 2000s. The theme was well-captured in a 2009 article in Wired magazine by science writer Amy Wallace, which drew hundreds of angry comments online. Wallace cast the vaccine-autism controversy as a “war on science,” with one side defending data, evidence, and reason while the other side fought for “pseudo-science” and “snake-oil.” In defense of science stood Offit, described as a pediatrician living in middle-class modesty, who “from an early age . . . embraced the logic and elegance of the scientific method.” Among his enemies were men like autism advocate Curt Linderman, who was reportedly “puffing on a cigarette” as he told Wallace, “We live in a very toxic world.” The battle between allegedly rational and irrational actors boiled over into the reader comments. One reader joked that autism was caused by the decline in pirates, since the two were inversely correlated on a graph. Another accused Wallace of being irrational herself: “200 years ago you would’ve been writing this article on the practice of using leaches to remove ‘bad blood,’” he wrote, “eventually the truth does come out . . . hence we know the world is not flat.”71
That comment hinted at yet another key theme of vaccine-autism reporting: the nature of evidence and expertise. On one level, the debate was about the very claim that science alone formed the pinnacle of knowledge, and that scientists were the only source of such knowledge. “What I’m asking is that people trust their experts,” pleaded Offit on 60 Minutes.72 McCarthy, meanwhile, asked that doctors and scientists acknowledge the expertise of parents (and mothers in particular). “I believe that parents’ anecdotal information is scientific information,” she argued on Larry King.73 “At home, Evan is my science,” she said on Oprah. In dispute was the definition of scientific evidence, the validity of that evidence, and such evidence as a basis for expertise. The debate over vaccines and autism took place in the context of a growing popular backlash against the pharmaceutical industry generally, which helped bring scientists’ claims to exclusive expertise under scrutiny.74 “Vaccines make the pharmaceutical industry billions of dollars. They make my business billions of dollars,” said UCLA pediatrician and McCarthy supporter Jay Gordon; surely, he added, that would influence how vaccines were used.75 To McCarthy and other vaccine-skeptical parents, anyone with any connection to Big Pharma’s profits could not possibly produce objective evidence. In this context, they argued that parental observations constituted critical evidence not only because parents knew their children best, but also because only their observations were untainted by profit and greed.
But if government, doctors, and the drug industry couldn’t be trusted, neither could selfish middle- and upper-middle-class mothers. Representations of these mothers constituted another key theme of vaccine-autism media reports. They were shown caring for autistic children, they were recorded saying that they blamed vaccines for the condition, and, increasingly as the decade progressed, they were held up as the nation’s premier vaccine refusers, putting the rest of society at risk of infectious disease epidemics in their narrow-minded quest to protect their own children from vaccine injury. The self-serving, usually white, often liberal mother appeared in media as diverse as Frontline and the television drama Law and Order—which often drew inspiration from the headlines of the day.76 In a 2009 episode, the daughter of a working-class mother caught a fatal case of measles from the unvaccinated son of an upper-class mother. When detectives went to the unvaccinated boy’s home (a posh New York brownstone), his mother refused to take the blame. “I’m not responsible for other people’s kids. It’s my family. It’s my choice,” she said. For choosing not to vaccinate her son, she was called a “lunatic,” a “nutcase mom,” a “danger to society,” and a killer, and ultimately she ended up in court. The jury didn’t convict her; her right to refuse vaccination for her son was protected by law. But she was condemned nonetheless for being “selfish” (the title of the episode), and for endangering her community in a misguided and foolish attempt to protect her son from an imagined threat.77
This fictional character was a caricature of the educated, well-off, twenty-first-century parent often featured in media representations of the vaccine debate. She was a parent who trusted “alternative medicines, organic food and yoga” and distrusted “Big Pharma and their lackeys in the media.”78 The threat she chose to avoid was a primary concern of many vaccine skeptics in the 2000s (across lines of class, race, or politics): toxic chemicals in vaccines and their artificial stimulation of the immune system. In a 2005 article in Rolling Stone magazine, environmental lawyer and activist Robert F. Kennedy Jr. (nephew of President John F. Kennedy) charged that “public health authorities knowingly allowed the pharmaceutical industry to poison an entire generation of American children” with the mercury in vaccines. The controversial article raised the specter of an environmental scare “bigger than asbestos, bigger than tobacco”—invoking the idea that science had been wrong before.79 McCarthy, too, stressed that she wasn’t anti-vaccine but “anti-toxin,” and she lent her support to a rising popular movement that marched on Washington in 2008 to demand that government and industry “Green our Vaccines.”80
“Green Our Vaccines” made the news because it featured celebrities McCarthy and her then-boyfriend and actor Jim Carrey. It also made the news because it spoke to a growing “green” movement in which consumers began seeking environmentally “friendly” cars, food, toys, clothes, and more. The movement was, in many ways, the contemporary embodiment of what anthropologist Mary Douglas and political scientist Aaron Wildavsky called a “widespread, across-the-board concern about environmental pollution and personal contamination.” In their study on risk perception, Douglas and Wildavsky argued that in our modern world, “evil” comes in the form of “hidden technological contamination that invades the body of nature and of man.”81 In this world, risks are “hidden, involuntary, and irreversible”—a perfect description of how many vaccine skeptics in the 2000s understood vaccines. Douglas and Wildavsky also argued that each society’s view of the environment shapes the risks and dangers it chooses to pay attention to or ignore. In this framework, the search for an objective method to choose between risks is “doomed to failure,” because tolerable and intolerable risks are determined not by facts and figures but by a society’s commonly held values. In media reports that covered the vaccine-autism link, scientists quoted facts and figures about the very “real” risk of vaccine-preventable diseases, and the minuscule or non-existent risks of vaccines themselves. Parents described the risks they most feared—autism, not polio; toxic chemicals, not diphtheria. Objectivity had little hope of bringing such disparate risk perceptions into alignment. And so the debate continued.
The vaccine-autism debate also persisted because it was, in many ways, the perfect story for what sociologist Ulrich Beck dubbed the “risk society.”82 Concern with risk, Beck argued, is our modern condition. Americans and citizens of other affluent nations are at once acutely conscious of risk and pessimistic about the state’s and institutions’ abilities to manage risks. They are, as a result, plagued by uncertainty; since risk can’t be dependably identified or avoided, one has to assume it is everywhere.83 This mentality is connected to the increasingly protective form of child rearing prevalent in countries such as the United States, where the economic and emotional value of children continues its upward climb; safety gear and safety precautions for children—from car seats to organic baby food to flame-retardant pajamas—are ubiquitous and ever growing in number.84 In such a society, the media is a critical venue for identifying, communicating, and evaluating risks.85 The media certainly embraced this role in the debate over vaccines, covering it attentively, staying focused on the vaccine-autism link long after scientists had dismissed it, and giving voice to parental fears that spoke directly to a lack of confidence in government’s—and industry’s—ability to protect their children from omnipresent risks.
SERVING PUBLIC HEALTH
It’s a journalistic maxim that “good news is no news,” and the media’s coverage of vaccination in the first decade of the 2000s certainly bore this out. As the debate over vaccines and autism raged, good news about vaccines and childhood vaccination received relatively little attention—though there was plenty of it. Scientists were making strides on entirely new types of vaccines, against chronic diseases such as Alzheimer’s, and even addictions including smoking. Diphtheria, rubella, and polio had long since become diseases of the past. Cases of chicken pox were plummeting. Cases of hepatitis B were still steadily declining.86 Measles was down to record low levels, and, since the late nineties, all instances of the disease appeared to have originated overseas. Measles experts called this a milestone; the disease, they declared, had been “eliminated” from the United States. The achievement was due to high immunization rates: more than 90 percent of all infants and 98 percent of schoolchildren were vaccinated with at least a single dose of measles vaccine.87 And measles was no mere exception. In 2009 the CDC reported that “immunization rates for vaccines routinely recommended for children remain at or near record highs.”88
But health officials were still finding cause for concern. Outbreaks of mumps erupted in 2006 and again in 2009.89 Measles cases were low, but in 2011 the number of cases spiked to more than two hundred, up from an average of sixty cases annually in previous years. Most of the cases, however, were still originating with foreigners or Americans who had traveled abroad: the twenty-four-year-old who brought measles home to Indiana from Indonesia, the Burmese refugee who brought the disease to Los Angeles, the Minnesota toddler who caught the infection on a trip to Kenya.90 More worrisome was the number of cases of pertussis, which appeared to be making a domestic comeback, particularly on the West Coast. The disease had always peaked in three- to five-year cycles, and cases of the disease had been marching steadily upward since 1980.91 But in 2004 and 2010, the peaks were much higher than usual. In 2010 pertussis rates in California shot back up to 1940s levels.92 The same happened in Washington State the following year.93 Across the country, there were more than 27,000 cases of the disease, a staggering increase over the 13,000 cases reported in 2008.94
There were many possible explanations for the outbreaks and increases. To begin with, mumps vaccine was never as protective as the measles and rubella components of the MMR vaccine. And scientists speculated that certain factors—like close contact in close living quarters—could prompt the infection to take hold in even well-vaccinated populations. (The 2006 outbreaks had hit hard in college dorms, and the 2009 outbreak was largely limited to “tradition-observant” Jewish communities.95) Moreover, both measles and mumps were more prevalent abroad than in the United States, so imported cases were always to be expected. In the case of pertussis, the situation appeared to be a bit more complicated. Outbreaks might be due to the fact that a new acellular vaccine against the disease, adopted in the nineties, wasn’t as effective as the older whole-cell vaccine. They might be due to the fact that the pathogen was evolving, or that new strains of the bacteria were beginning to cause outbreaks. They also might be due to changes in the health of the population; asthma, for example, more prevalent than ever, seemed to increase susceptibility to the disease.96
These were the issues debated in scientific meetings and journals. But another explanation—one that covered all of the outbreaks in question—got most of the attention in the popular press: simply put, parents weren’t adequately vaccinating their children. Because of unfounded fears of vaccine side effects, parents were delaying, skipping, or altogether avoiding vaccines for their children, and it was these deviations from recommended pediatric care that were behind all rises in vaccine-preventable disease. When three Minnesota children were sickened and one died of meningitis during a Hib vaccine shortage, a CDC spokesperson told the press that the shortage wasn’t to blame for the outbreak—the problem was children who weren’t vaccinated because of their parents’ worries about vaccines.97 When pertussis cases popped up in Michigan, doctors interviewed by local news media blamed the “growing number” of unvaccinated children and their vaccine-fearing parents.98 A CNN anchor announced that parental fears about vaccines and autism were behind the country’s highest rate of measles in a decade. “An increasing number of parents have been refusing to vaccinate their children against measles because of this fear of a connection,” she said.99
In media reports on outbreaks of vaccine-preventable diseases, that is, the cause was almost universally distilled to a single point: the misinformed, irrational, vaccine-fearing parent. As described above, this distillation served a multitude of journalistic purposes: it was easy to digest, easy to explain, and at the same time easy to expand into a debate that resonated with deeply held values and concurrent trends. This distillation, however, also served a public health purpose. As researchers struggled to explain the persistence of measles, mumps, and pertussis, health officials and now the media emphasized the need for parents to immunize their children. “The rise in whooping cough cases continues because parents are not following through on vaccination,” declared a Seattle Times editorial, even as other outlets reported that the rise was due to a wholly different reason: fading immunity proffered by the vaccine.100 The editorial may have been a distortion of the truth, but it served a more general purpose. Pointing a finger at those who refused to vaccinate—and there were particularly robust clusters in Washington State, Colorado, Oregon, and California—helped illustrate the urgency of the need for all members of a community to vaccinate against all preventable infections. “It is of concern when we have these communities in the United States where there’s enough people who have made this decision [not to vaccinate] that if the measles virus is imported from overseas, that it could actually spread and cause an outbreak,” a CDC scientist told a reporter.101
Training the spotlight on vaccine refusers distracted from the shortcomings of vaccines while simultaneously building a case for the importance of vaccination. At a time when even record-high vaccination rates failed to fully keep vaccine-preventable diseases at bay, parents who avoided vaccinating their children for personal or philosophical reasons stood as a vivid reminder that so-called herd immunity rested on cooperation of the entire herd. Pointing to, and even demonizing, such parents served to illustrate the importance of vaccination for community and not just individual benefit. Some people were too young or infirm to be safely vaccinated. And among those who could be safely immunized, vaccines were never 100 percent effective, as health officials increasingly pointed out in the press. When everyone who could get vaccinated did get vaccinated, it protected the weaker members of the herd and made up for the individuals whose vaccines didn’t “take.” And when parents rejected some or all vaccines for personal or philosophical reasons, it put the entire community at risk.
This message was rooted in facts and figures—the number of parents who had vaccine doubts or who had skipped some or all vaccines for their children. According to one study reported in the press, one in five parents feared a link between vaccines and autism, and more than half had some worries about vaccine side effects, even if they didn’t believe vaccines caused autism.102 According to another, 40 percent of parents delayed or refused a vaccine for their kids.103 To make things worse, the number of vaccine exemptions parents were filing for their children was on the rise (albeit by 0.2 percent).104 Such reports downplayed (or ignored) the myriad reasons that parents delayed or skipped vaccines—in the context of a growing vaccine schedule, no less. Which meant that the message to vaccinate for the herd was not simply about science but about values. The media’s renewed focus on the importance of herd immunity made this clear, as it cast the issue in moralistic terms. Parents who refused vaccines for their children may have had a legal right to do so, but, like the non-vaccinating mother in Law and Order, they were portrayed as selfish and immoral. Such parents were “taking advantage of all the parents who get inoculations for their children,” declared the Los Angeles Times.105 They were “gambling with the lives of not just their kids, but all the children around them,” reported USA Today.106 “By not vaccinating your child you are taking selfish advantage of thousands of others who do vaccinate their children. . . . We feel such an attitude to be self-centered and unacceptable,” a Philadelphia physicians group told the press.107
The vilification of the philosophical vaccine refuser in the media coincided with a national debate on health care, as President Barack Obama’s administration tried to push comprehensive reform, once and for all, through Congress. The political struggle over health reform brought forth familiar and often heated ideological arguments for and against government involvement in health care.108 The arguments were a reminder that personal responsibility for health is a deeply held American principle. Alone among wealthy democracies, the United States has long opted not to provide insurance for a significant fraction of its population and has opted to keep insurance coverage for most tied to individual or household employment.109 At the same time, American public health efforts have often emphasized individual behavior and lifestyle choices—regarding diet, exercise, and smoking, for example—as the most important path to good health. At the core of the American health care system, that is, stands an assumption that Americans are fundamentally responsible for their own health and health care. Parents who delayed or avoided vaccines may have been willfully ignoring the exhortation to vaccinate for the good of the community that was echoed across media reports on vaccination, but they were making a choice compatible with deeply ingrained American beliefs about personal responsibility for health.
At the end of the decade, journalist Seth Mnookin, author of a popular book that dissected the debate over the vaccine-autism link, argued that the media was to blame for creating national panic over the issue in the first place.110 The moment of “original sin,” he said, was not Andrew Wakefield’s 1998 study, but the media’s coverage of the study. He pointed out that the paper had been called the “worst” paper the Lancet had ever published, and that there had never been a moment in which the paper seemed like good science. “It’s absolutely insane for any journalist to take the results of a twelve-person case series and draw these population-wide conclusions,” Mnookin said.111 Mnookin’s mea culpa on behalf of the media reinforced the idea that the media is a key player in scientific debates; Wakefield may have produced bad science, and the Lancet may have published it, but the media had a responsibility to see through these systemic failures and get the story—and the risk—right. Mnookin’s admission reminded Americans that the media is a key institution in the risk society, one that Americans needed to rely upon as an arbiter of good science and bad.
The media was, in fact, responsible—but not necessarily for peddling a myth about autism and vaccines. The media was responsible for distilling the nation’s vaccine worries down to one easily digested, and refuted, reason. It helped create a debate without any shades of gray. At the beginning of the twenty-first century, it often ignored parents who had reservations unconnected to autism. It often ignored other factors that kept children from getting fully vaccinated, such as the challenges of living in poverty, language barriers, and health care system hurdles.112 It also took the civil liberties conundrum at the foundation of all vaccination efforts and made them an issue of black-and-white morality: people who didn’t vaccinate their children were self-serving and dangerous, while those who cared about science, reason, and society’s weakest members were the standard by which all Americans should abide.
Moreover, pinning responsibility for a prevalent belief on the shortcomings of the media (or on Wakefield) missed the broader context within which that belief emerged. It overlooked the accumulation of vaccine scares and doubts in the nineties. It paid no heed to the fact that the media always reflects cultural assumptions, widely held values, and ideologies as much as it shapes them. And it sidestepped a set of more fundamental questions about the myriad roles that Americans expect the media to play: government mouthpiece, voice of the citizenry, forum for debate, and a source of entertainment, among others. As the media continued to rapidly evolve throughout this period, its ability to carry out these roles and others continued to shift. And as the debate over vaccines and autism pressed on, another debate, about vaccination against human papillomavirus, or HPV, emerged. This debate belonged wholly to the new media environment, even as it reflected a long history of ideas about vaccines and how Americans should use them.