Denialism: How Irrational Thinking Hinders Scientific Progress, Harms the Planet, and Threatens Our Lives

by Michael Specter

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  Vaccines and the Great Denial

  Marie McCormick is a studious and reserved woman with the type of entirely unthreatening demeanor that comes in handy in her job as a professor of pediatrics at the Harvard School of Public Health. She has devoted most of the past four decades to preparing physicians to nurture mothers and their children, and, since her days as a student at Johns Hopkins, has focused much of her research on high-risk newborns and infant mortality. Like many prominent academic physicians, her renown had largely been restricted to her field. Until 2001.

  That was the year she was asked to lead a National Academy of Sciences commission on vaccine safety. The Immunization Safety Review Committee was established by the Institute of Medicine to issue impartial, authoritative, and scientifically rigorous reports on the safety of vaccinations. Its goal, while vital, seemed simple enough: bring clarity to an issue where too often confusion reigned. McCormick took on the assignment readily, although she was surprised at having been selected. It was not as if she considered vaccine safety unimportant—the issue had preoccupied her for decades. Nonetheless, vaccines were not McCormick’s area of expertise and she couldn’t help thinking that there must be someone better suited to the job. “My research has always been on the very premature,” she explained. “So I was a bit naive about why they might want me to run that committee.” She soon made a discovery that surprised her: “I realized that all of us on the committee were selected because we had no prior contact with vaccines, vaccine research, or vaccine policy. We all had very strong public health backgrounds, but we were just not clear about the nature or intensity of the controversy.”

  The controversy that the panel set out to address was whether the benefits of receiving childhood vaccines outweighed the risks. In particular, the committee was asked to investigate the suggested link between the measles, mumps, and rubella inoculation routinely administered between the ages of one and two and the development of autism, which often becomes apparent at about the same time. The incidence of autism has risen dramatically during the past three decades, from less than one child in twenty-five hundred in 1970 to nearly one in every 150 today. That amounts to fifty new diagnoses of autism or a related disorder every day—almost always in children who seem to be developing normally, until suddenly their fundamental cognitive and communication skills begin to slip away.

  Parents, understandably desperate to find a cause and often wholly unfamiliar with many diseases that vaccines prevent, began to wonder—publicly and vocally—why their children even needed them. There could be no better proof of just how effective those vaccines have been. With the sole exceptions of improved sanitation and clean drinking water, no public health measure has enhanced the lives of a greater number of people than the widespread adoption of vaccinations, not even the use of antibiotics. Cholera and yellow fever, both ruthless killers, are hardly known now in the developed world. Until vaccines were discovered to stop them, diphtheria and polio rolled viciously through America every year, killing thousands of children, paralyzing many more, and leaving behind ruined families and a legacy of terror. Both are gone. So is mumps, which in the 1960s infected a million children every year (typically causing them to look briefly like chipmunks, but occasionally infiltrating the linings of the brain and spinal cord, causing seizures, meningitis, and death).

  Even measles, an illness that most young parents have never encountered, infected nearly four million Americans annually until 1963, when a vaccine was introduced. Typically, hundreds died, and thousands would become disabled for life by a condition called measles encephalitis. (In parts of the developing world, where vaccines are often unavailable, measles remains an unbridled killer: in 2007, about two hundred thousand children died from the disease—more than twenty every hour.) In the United States, fifty-two million measles infections were prevented in the two decades after the vaccine was released. Without the vaccine, seventeen thousand people would have been left mentally retarded, and five thousand would have died. The economic impact has also been dramatic: each dollar spent on the MMR vaccine saves nearly twenty in direct medical costs. That’s just money; in human terms, the value of avoiding the disease altogether cannot be calculated. By 1979, vaccination had even banished smallpox, the world’s most lethal virus, which over centuries had wiped out billions of people, reshaping the demographic composition of the globe more profoundly than any war or revolution.

  Those vaccines, and others, have prevented unimaginable misery. But the misery is only unimaginable to Americans today because they no longer need to know such diseases exist. That permits people to focus on risks they do confront, like those associated with vaccination itself. Those risks are minute, and side effects are almost always minor—swelling, for instance; a fever or rash. Still, no medical treatment is certain to work every time. And serious adverse reactions do occur. If you hunt around the Internet for an hour (or ten) you might think that nobody pays attention to vaccine safety in America today. The Public Health Service has actually never been more vigilant. For example, in 1999 the Centers for Disease Control called for an end to the use of the oral polio vaccine, developed by Albert Sabin, which, because it contained weakened but live virus, triggered the disease in about ten people out of the millions who took it each year. (A newer injectable and inactivated version eliminates even this tiny threat.) Despite legitimate concerns about safety, every vaccine sold in the United States is scrutinized by at least one panel of outside advisers to the Food and Drug Administration before it can be licensed; many don’t even make it that far. As a result, vaccination for virtually every highly contagious disease is never as dangerous as contracting the infections those vaccines prevent.

  Prevention is invisible, though, and people fear what they cannot see. Nobody celebrates when they avoid an illness they never expected to get. Humans don’t think that way. Choosing to vaccinate an infant requires faith—in pharmaceutical companies, in public health officials, in doctors, and, above all, in science. These days, that kind of faith is hard to come by. So despite their success, there has been no more volatile subject in American medicine for the past decade than the safety of vaccines. There is a phrase used commonly in medicine: “true, true, and unrelated.” It is meant to remind physicians not to confuse coincidence with cause. That kind of skepticism, while a fundamental tenet of scientific research, is less easily understood by laymen.

  For most people, an anecdote drawn from their own lives will always carry more meaning than any statistic they might find buried in a government report. “Neither my husband nor anyone in his family has ever been vaccinated . . . and there isn’t a single person in his family who has ever had anything worse than a cold,” one woman wrote on the heavily read blog Mom Logic. “Myself and my family, on the other hand, were all vaccinated against every possible thing you could imagine. . . . Somehow we all got the flu every single year. Somehow everyone in my family is chronically ill. And amazingly, when the people in my family reach 50 they are all old and deteriorated. In my husband’s family they are all vibrant into their late 90’s. My children will not be vaccinated.”

  This particular epidemic of doubt began in Britain, when the Lancet published a 1998 study led by Dr. Andrew Wakefield in which he connected the symptoms of autism directly to the MMR vaccine. The study was severely flawed, has been thoroughly discredited, and eventually ten of its thirteen authors retracted their contributions. Yet the panic that swept through Britain was breath-taking: vaccination rates fell from 92 percent to 73 percent and in parts of London to nearly 50 percent. Prime Minister Tony Blair refused repeatedly to respond to questions about whether his youngest child, Leo, born the year after Wakefield’s study, received the standard MMR vaccination. Blair said at the time that medical treatment was a personal matter and that inquiries about his children were unfair and intrusive. No virus respects privacy, however, so public health is never solely personal, as the impact on Britain has shown. England and Wales had more ca
ses of measles in 2006 and 2007 than in the previous ten years combined. In 2008, the caseload grew again—this time by nearly 50 percent. The numbers in the United States have risen steadily as well, and the World Health Organization has concluded that Europe, which had been on track to eliminate measles by 2010, is no longer likely to succeed. Vaccination rates just aren’t high enough.

  Fear is more infectious than any virus, and it has permitted politics, not science, to turn one of the signature achievements of modern medicine into fodder for talk show debates and marches on Washington. Celebrities like Jenny McCarthy, who oppose the need for a standard vaccination schedule, denounce celebrities like Amanda Peet who are willing to say publicly that the benefits of vaccines greatly outweigh the risks. Peet represents Every Child by Two, a nonprofit organization that supports universal vaccination. Not long after she began speaking for the group, Peet and McCarthy began to clash. At one point, McCarthy reminded Peet that she was right because “there is an angry mob on my side.” When three physicians, appearing on Larry King Live, disagreed with McCarthy, she simply shouted “Bullshit!” in response. When that didn’t shut them up, she shouted louder. Data, no matter how solid or frequently replicated, seems beside the point.

  What does it say about the relative roles that denialism and reason play in a society when a man like Blair, one of the democratic world’s best-known and most enlightened leaders, refused at first to speak in favor of the MMR vaccine, or when a complete lack of expertise can be considered a requirement for participation in America’s most prominent vaccine advisory commission? “Politically, there is simply no other way to do it,” Anthony S. Fauci explained. “Experts are often considered tainted. It is an extremely frustrating fact of modern scientific life.” Fauci has for many years run the National Institute of Allergy and Infectious Diseases, where at the beginning of the AIDS epidemic he emerged as one of the public health establishment’s most eloquent and reliably honest voices. He shook his head in resignation when asked about the need for such a qualification, but noted that it has become difficult to place specialists on committees where politics and science might clash. “You bring people with histories to the table and they are going to get pummeled,” he said. “It would simply be war.”

  War is exactly what the vaccine commission got. During McCormick’s tenure, the National Academy of Sciences published several reports of its findings. In a 2001 study, Measles-Mumps-Rubella Vaccine and Autism, the committee concluded that there was no known data connecting MMR immunizations with the spectrum of conditions that are usually defined as autism. The wording left room for doubt, however, and the report resolved nothing. Three years later, with vaccination rates falling in the United States and anxiety among parents increasing rapidly, and after many calls from physicians for clearer and more compelling guidance, the committee revisited the issue more directly.

  Even at the height of the age of AIDS, when members of the activist group ACT UP stormed St. Patrick’s Cathedral, surrounded the White House, shut down the New York Stock Exchange, and handcuffed themselves to the Golden Gate Bridge, all to protest the prohibitive cost of drug treatments and the seemingly endless time it took to test them, rancor between researchers and the advocacy community was rare. The contempt AIDS activists felt for federal officials—particularly for the Food and Drug Administration and its cumbersome regulations—was palpable. Even the most strident among them however, seemed to regard physicians as allies, not enemies.

  Those days have ended, as the Institute of Medicine vaccine committee came to learn. For years, the culprits most frequently cited as the cause of autism had been the measles, mumps, and rubella vaccine, as well as those that contained the preservative thimerosal. Thimerosal was first added to vaccines in the 1930s in order to make them safer. (Before that, vaccines were far more likely to cause bacterial infections.) While descriptions of autistic behavior have existed for centuries, the disease was only named in 1943—and its definition continues to evolve. Neurodevelopmen tal illnesses like autism have symptoms similar to those of mercury poisoning, and there is mercury in thimerosal. What’s more, American children often receive a series of vaccinations when they are about eighteen months old. That is a critical threshold in human development, when a child often begins to form simple sentences and graduates from chewing or pawing toys to more engaging and interactive forms of play. Some children don’t make that transition—and because they receive so many shots at the same time, many parents feared, naturally enough, that the inoculations must have been the cause.

  Anguished parents, who had watched helplessly and in horror as their children descended into the disease’s unending darkness, could hardly be faulted for making that connection and demanding an accounting. The Immunization Safety Review Committee was supposed to provide it, although its members represented an establishment trusted by few of those who cared most passionately about the issue. AIDS activism had its impact here too, because it changed American medicine for good: twenty-first-century patients no longer act as if their doctors are deities. People demand to know about the treatments they will receive, and patient groups often possess more knowledge than the government officials entrusted to make decisions about their lives. They have every right to insist on a role in treating the diseases that affect them.

  The rise of such skepticism toward the scientific establishment (as well as the growing sense of anxiety about environmental threats to our physical health) has led millions to question the authority they once granted, by default, not only to their doctors, but also to organizations like the National Academy of Sciences. Faced with the medical world that introduced, approved, and relentlessly promoted Vioxx, a patient can hardly be blamed for wondering, “What do these people know that they are not telling me?” Uncertainty has always been a basic ingredient of scientific progress—at least until reason is eclipsed by fear. Unlike other commodities, the more accessible knowledge becomes, the more it increases in value. Many autism activists, however, sensed that federal health officials and researchers who work with them were guilty of avarice and conspiracy, or at least of laziness—guilty until proven innocent (and innocence is hard to prove). To use Fauci’s formulation, when experts are tainted, where can you place your trust?

  It was, in the highly emotional words of one vaccine activist who rejects the federal government’s approach, a conspiracy among scientists to protect pharmaceutical companies at the expense of America’s children. Because this is the age of denialism, evidence that any pharmaceutical company has engaged in venal behavior means that they all have. “When mothers and fathers take their healthy sons and daughters to pediatricians to get vaccinated and then witness them suffering vaccine reactions and regressing into chronic poor health within hours, days and weeks of getting sometimes five to ten vaccines on one day, they are not going to accept an illogical, unscientific explanation like ‘it’s all a coincidence,’ ” Barbara Loe Fisher has written. Fisher is the leader of the National Vaccine Information Center, the most influential of the many groups that oppose universal vaccination. (This sentiment, that children receive too many vaccinations when they are young, also draws frequently on anecdotal experience and the sort of conspiracy theories that are hallmarks of denialism: “No wonder our children are damaged and dealing w/ADHD, autism, diabetes, asthma, allergies, etc.,” Fisher wrote. “Forty-eight doses of fourteen vaccines by age 6 is excessive and is only for the benefit of the drug companies who promote fear to fund their bottom line.”)

  The vaccine panel found itself at ground zero in this war against authority and scientific rigor. “It was the perfect storm,” McCormick told me one day when we met in her office at Harvard. “Because all of a sudden we had the expansion of shots, the issue of the mercury in vaccines, and this rapid rise in the diagnosis of autism. Everyone put two and two together and came out with six.” In a society where numeracy is rarely prized and subjective decisions often outweigh rational choices, it’s not hard to understand at least s
ome of the reasons why that happened: science works slowly and has yet to determine a cause for autism, which isn’t even a single “disease,” but rather a complex set of developmental disorders. In fact, it makes no more sense to talk about “curing” autism than it does to discuss a cure for cancer; “cancer” is an umbrella term for many diseases characterized by malignant growth. A successful treatment for leukemia won’t stop the spread of melanoma. Effective treatments for autism will require a fuller understanding of how those developmental disorders differ—but they can differ widely. Autism spectrum disorders vary in severity from mild conditions like Asperger’s syndrome to those characterized by sustained impairments in social interaction and communication abilities.

  When “experts,” often with degrees or licenses that seem impressive, suddenly emerge to tell heartbroken family members that there is a simple solution to their problems, who wouldn’t want to believe it might be true? And with the help of the Internet, those experts are just a mouse click away. People often cling to their initial response when they discover something profoundly disturbing, even if more compelling evidence emerges. It’s a form of denialism, but also a common human instinct. Not surprisingly, then, the vaccine panel was indeed “pummeled” during its deliberations. Attacks came by e-mail and over the telephone. One member was effectively forced to resign after he received an escalating series of personal (and credible) threats that eventually became so worrisome that McCormick agreed to shift the venue of the committee’s final public meeting to a room where the members would be able to come and go in safety, interacting with the audience behind a human moat of security guards. Like a jury deciding the fate of a gangland leader, committee members were encouraged to stay in a single hotel, discuss the location with no one, and refrain from wandering about town on their own. Security was tightened; all this before the committee made its final report. When it came time for the meeting, each member was loaded onto a bus and driven directly to a garage beneath the main building of the National Academy of Sciences. That way, they could make it to the hearing room without having to run the gauntlet of protestors.