What the hell's wrong with us? Autism, vaccines and why some people believe Jenny McCarthy over every doctor

There are reams of scientific literature, and then the comfort of conspiracy theory. Why do we favor the latter?

Published November 29, 2015 5:00PM (EST)

Jenny McCarthy on "The View"             (ABC)
Jenny McCarthy on "The View" (ABC)

Excerpted from "Suspicious Minds: Why We Believe Conspiracy Theories" by Rob Brotherton

Stephanie Messenger is an Australian author of self-published educational books for children, such as Don’t Bully Billy and Sarah Visits a Naturopath. In 2012, she published a book that, according to promotional materials, “takes children on a journey to learn about the ineffectiveness of vaccinations and to know they don’t have to be scared of childhood illnesses, like measles and chicken pox.” The blurb on the back of the book talks about how nowadays we’re bombarded with messages urging us to fear diseases, from people who have “vested interests” in selling “some potion or vaccine.”

Messenger called the book Melanie’s Marvelous Measles. Perhaps she drew inspiration from the beloved British children’s author Roald Dahl’s George’s Marvellous Medicine. Which would be ironic, given Dahl’s own feelings about measles, which he wrote about in 1986.

Olivia, my eldest daughter, caught measles when she was seven years old. As the illness took its usual course I can remember reading to her often in bed and not feeling particularly alarmed about it. Then one morning, when she was well on the road to recovery, I was sitting on her bed showing her how to fashion little animals out of coloured pipe-cleaners, and when it came to her turn to make one herself, I noticed that her fingers and her mind were not working together and she couldn’t do anything.

“Are you feeling alright?” I asked her. “I feel all sleepy,” she said.

In an hour she was unconscious. In twelve hours she was dead. The measles had turned into a terrible thing called measles encephalitis and there was nothing the doctors could do to save her.

In 1962, when the measles took Olivia’s life, there was no vaccine. Practically everyone caught the measles at some point in childhood. Most recovered without any lasting damage, but it killed around a hundred children in the United Kingdom and more than four hundred in America every year, and put tens of thousands more in the hospital, leaving some blind or brain-damaged. When a vaccine was licensed in the United States a year later, in 1963, the number of people who caught measles plummeted by 98 percent. “In my opinion,” Dahl concluded, “parents who now refuse to have their children immunized are putting the lives of those children at risk.”

Fortunately, we now have a vaccine that protects not only against measles, but against mumps and rubella as well: the combination MMR shot. The World Health Organization estimates that between the years 2000 and 2013, measles vaccination saved more than fifteen million lives around the world. Unfortunately, since the late 1990s, MMR has been the focus of intense debate and fear, often with conspiratorial undertones.

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The trouble with MMR started in the United Kingdom. When the vaccine was introduced there, in 1988, it was an immediate success. In the first year, a million children were vaccinated. For the next ten years, uptake of the vaccine remained above 90 percent. Then, in 1998, a doctor called Andrew Wakefield, along with a team of colleagues, published a study that ignited controversy. In the paper, which was published by a highly respected medical journal, The Lancet, Wakefield and colleagues claimed to have found measles virus in the intestines of a handful of autistic children. The paper speculated that the MMR shot may have played a role in causing the children’s autism, but pointed out that the findings were not sufficient to prove the relationship. Regardless, Wakefield took the findings directly to the media. In a press conference held the day before the paper was published, and that many of the paper’s coauthors refused to attend, Wakefield claimed that the danger posed by MMR was so great that the vaccine ought to be immediately withdrawn, and individual measles, mumps, and rubella shots, given a year apart, ought to be used instead. (Wakefield himself, it is worth noting, has never opposed vaccination across the board; in fact, he has maintained that vaccines are an important part of health—just not the combined MMR shot, which he continues to argue is linked to autism.)

Concerned parents are understandably influenced by the media, and there is no better illustration than the panic that followed Wakefield’s alarming announcement. Interest in the story was modest at first. In 1998, the year of Wakefield’s press conference, a handful of news stories reported his claim, and vaccine uptake began to fall slightly. It wasn’t until 2001 that the story began to take on a life of its own. For several years, the idea that the MMR vaccine causes autism received more coverage in the British media than any other science story. As fear-mongering coverage peaked between 2001 and   2003, uptake of the vaccine dipped to 80 percent. Some parts of the country, particularly parts of London, had drastically lower vaccination rates.

The falling vaccination rates prompted outbreaks of the diseases that the vaccine prevents—particularly, since it’s so highly contagious, measles. The first outbreak was in Dublin in 2000, where vaccination rates were already lower than in the United Kingdom. Almost sixteen hundred cases of measles were reported. More than a hundred children were admitted to hospital with serious complications, and three died. A thirteen-year-old boy died in England in 2006, becoming the first person to die of measles in England since 1994. In 2008, measles was declared endemic in the United Kingdom for the first time in fourteen years. In 2012 there were more than two thousand cases of measles in England and Wales—mostly affecting children and teenagers whose parents had declined the MMR vaccine years earlier. In 2013, another outbreak in Wales infected more than a thousand people, hospitalizing eighty-eight, and killing a twenty-five-year-old man.

Watch 8 of the nuttiest things Jenny McCarthy has ever said — in public that is:
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In 2004 it emerged that the entire MMR-autism debate was built on a lie. Investigative journalist Brian Deer uncovered evidence that, before beginning his research, Wakefield had been involved in a patent application for an allegedly safer alternative to the combined MMR vaccine. He had also received a payment in the region of half a million pounds from a personal-injury law firm to conduct the research, and the same law firm had referred parents who believed their children to be vaccine-damaged to Wakefield so he could use the children in his research. But failing to declare a conflict of interest was the least of Wakefield’s wrongdoing. Deer discovered that the study, which involved conducting invasive medical procedures on developmentally challenged children, had not been granted ethical approval. Finally it emerged that Wakefield may have fudged elements of the children’s medical histories to fit his MMR-autism theory, and a co-worker suggested that Wakefield had knowingly reported incorrect test results. Ultimately the paper was retracted, and Wakefield’s license to practice medicine in the United Kingdom was withdrawn.

That all looks pretty bad, I think it’s fair to say, but we shouldn’t necessarily dismiss the hypothesis that MMR somehow causes autism on the basis of Wakefield’s behavior alone. Since his paper was published, dozens of independent, large, well-conducted studies, involving hundreds of thousands of children across several continents, have found no association whatsoever between the MMR vaccine and autism. As Paul Offit, a pediatrician and immunologist, has pointed out, we still don’t know for sure exactly what causes autism, but by now we can say with considerable certainty that vaccines can be crossed off the list of suspects. Despite Wakefield’s study being utterly discredited, and despite the weight of evidence against his claims, concerns about MMR continue to linger, in Britain and elsewhere. It didn’t take long for the panic over MMR to cross the Atlantic, where the anti-vaccination cause was taken up by celebrities such as Jenny McCarthy and her then-boyfriend Jim Carrey. Along the way, the claims mutated and merged with other fears. A particular concern in the United States was the presence in various vaccines of a mercury-based preservative, thimerosal, which was held by some anti-vaccine activists to be responsible for the increasing prevalence of autism. (Studies have shown this claim to be mistaken, too.) For many concerned parents, the controversy has thrown suspicion on the entire vaccine schedule. According to a 2009 survey, more than one in ten American parents have refused at least one recommended vaccine for their child, and twice as many parents choose to delay certain shots, leaving their child unprotected for longer.

Wakefield remains a polarizing figure, a hero to some and a dangerous quack to others. A recent article, written in the wake of a measles outbreak that began at Disneyland in California in December 2014, described Wakefield as the “father of the anti-vaccine movement.” Yet unfounded fears about vaccines predate Andrew Wakefield. In fact, this wasn’t the first time a British doctor had gone to the media with trumped-up claims of vaccine-related harm. An uncannily similar episode had transpired a few decades earlier.

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The most common symptom of pertussis is uncontrollable fits of coughing. Because of narrowing of the throat, the struggle to draw a breath sometimes produces a high-pitched whooping noise, hence the disease’s colloquial name, whooping  cough.

The coughing can be violent enough to result in bleeding eyeballs, broken ribs, and hernias. In extreme cases, the coughing can last up to four months, sometimes leading to malnourishment, loss of sight or hearing, or brain damage. But pertussis is most dangerous in infants. Infants don’t whoop. Instead, unable to breathe, they sometimes quietly turn blue and die. The World Health Organization estimates that almost two hundred thousand people die each year from whooping cough around the world, most of them young children in developing countries. Fortunately, we have a vaccine that protects not only against pertussis, but also against diphtheria and tetanus: the DTaP shot, formerly known as DPT. Unfortunately, in the 1970s and ’80s, DPT became the subject of intense debate and fear, often with conspiratorial undertones.

In 1973, a British doctor called John Wilson gave a presentation at an academic conference in which he claimed that the pertussis component of DPT was causing seizures and brain damage in infants. The research was based on a small number of children, and it has since emerged that many of the children were misdiagnosed, and some hadn’t even received the DPT vaccine. Regardless, Wilson took his findings to the media, appearing on prime-time television in a program that contained harrowing images of sick children and claimed that a hundred British children suffered brain damage every year as a result of the DPT vaccine. Uptake of the DPT vaccine fell from around 80 percent at the beginning of the decade to just 31 percent by 1978. This was followed by a pertussis epidemic during 1978 and ’79, in which a hundred thousand cases of whooping cough were reported in England and Wales. It’s estimated that around six hundred children died in the outbreak.

Despite flaws in Wilson’s study, as well as a growing number of studies that found no evidence of the alleged link between DPT and brain damage, by the early eighties the fear had spread to America. In 1982 a documentary called DPT: Vaccine Roulette aired on U.S. television. Like its British precursor, it was full of emotive scenes of children who had allegedly been harmed by the DPT vaccine. The damage was being covered up or ignored by the government and medical establishment, the documentary argued. It stopped short of telling parents outright not to have their children vaccinated, but the implication was clear.

One parent, a woman named Barbara Loe Fisher, watched Vaccine Roulette and came to believe that her own son had been injured by the DPT vaccine. Together with other parents who believed their children had been hurt by vaccines, Fisher formed a group called Dissatisfied Parents Together (or DPT for short). The group still exists, now going by the name National Vaccine Information Center. The change of name reflected the fact that their distrust of vaccines had broadened beyond the DPT shot. Over the years, Fisher’s group, and others like it, has questioned the safety and efficacy of practically every vaccine in use.

Which brings us back to where we started. The May 2, 1998, issue of The Lancet carried a letter to the editor penned by none other than Barbara Loe Fisher. She referred to a critique of Andrew Wakefield’s research as a “pre-emptive strike by US vaccine policymakers.” Hinting at nefarious motives, she wrote, “it is perhaps understandable that health officials are tempted to discredit innovative clinical research into the biological mechanism of vaccine-associated health problems when they have steadfastly refused to conduct this kind of basic science research themselves.” Fisher’s National Vaccine Information Center later bestowed upon Andrew Wakefield an award for “Courage in Science.”

So the current epidemic of fear over the MMR vaccine is in many ways simply an extension of the vaccine anxiety that blossomed in the 1970s. But it didn’t start there. In fact, people have been worried about the safety of vaccines—and the motives of the people who make and sell them—since the discovery of the very first vaccine.

A pox on you

Common symptoms of smallpox included foul-smelling and excruciatingly painful pus-filled blisters all over the face and body. Open sores inside the mouth poured virus particles into the mouth and throat, meaning that the disease was highly contagious, spread by coughing, sneezing, and even talking. Around one in three infected adults died of the disease, and four out of five children. Those who survived were often left disfigured, or worse—many were blinded, pregnant women miscarried, and children’s growth was stunted.

Smallpox killed more people than any other disease throughout history. As recently as 1967, smallpox killed an estimated two million people around the world in that year alone. The virus shaped the course of history. Battles and wars were won and lost because of outbreaks of smallpox. It killed monarchs and rulers in office. It helped clear the way for the colonization of North and South America by European settlers by killing off millions of the native inhabitants.

Fortunately, you’re not going to catch smallpox. The virus has been eradicated from the wild, thanks to the discovery, two centuries ago, of the world’s first vaccine. Unfortunately, the new practice of vaccination gave rise to the kind of vaccine anxiety and organized anti-vaccine movements that persist to this day.

The vaccine was discovered by Edward Jenner. Jenner was a classic mildly eccentric eighteenth-century English country gentleman. He dabbled in things like fossil collecting, hot air ballooning, and growing oversized vegetables. His interest in smallpox was piqued when, flirting with a milkmaid one afternoon, he learned the folk wisdom that catching cowpox, a disease that caused blisters on cows’ udders, somehow seemed to protect milkmaids and other farm workers against smallpox. In humans, cowpox just caused a few harmless blisters on the hands, but it seemed to somehow offer lifelong immunity to smallpox. Jenner decided to put this folk wisdom to the test. He initially exposed fifteen farm workers who had previously suffered from cowpox to smallpox virus. None became infected. Then, in 1796, he undertook his boldest experiment to date. He deliberately infected a young boy with cowpox, and then exposed him to smallpox. The boy did not get sick. Jenner called the procedure vaccination, derived from the Latin vaccinae meaning “of the cow,” and published his findings in 1798. By 1820, millions of people had been vaccinated in Britain, Europe, and the United States, and the number of people dying from smallpox was cut in half.

Not everyone was impressed. There immediately arose some sporadic opposition to the vaccine. Objections were occasionally raised on religious grounds—to vaccinate oneself, some argued, was to question God’s divine plan. Others objected for economic reasons, or simply out of disgust at a vaccine derived from sick cows, coupled with distrust of the doctors who administered them. By 1800, Jenner was moved to defend his vaccine from detractors, writing “the feeble efforts of a few individuals to depreciate the new practice are sinking fast into contempt.” His optimism was misplaced.

The first truly organized anti-vaccination movements have their origins in the Compulsory Vaccination Acts passed by British Parliament in the 1850s and ’60s. The first law, introduced in 1853, threatened parents who failed to vaccinate their children with fines and imprisonment. The law was widely accepted at first, due in large part to a particularly bad smallpox epidemic that had swept through England the year before, but vaccination rates fell off again when people realized that the law simply wasn’t enforced. Parliament passed a new tougher law in 1867. It was in reaction to these laws that the first dedicated and well-organized anti-vaccination leagues were formed. Critics claimed that the vaccine was at best useless, at worst a scam or a poison. By 1900 there were in the region of two hundred anti-vaccination groups across England. The United States quickly followed suit; American anti-vaccination societies began to spring up in the 1870s.

In 1898, the English critics of vaccination won. The British government gave in, passing a law that allowed so-called conscientious objectors to opt out of vaccinating their children. Objection certificates were made easier to obtain in 1907. Vaccination rates fell, and outbreaks of smallpox rose once again in parts of England. In neighboring Scotland and Ireland, where anti-vaccination movements had not gained as much traction, vaccination continued to be readily accepted, and smallpox continued to decline.

*

So vaccine anxiety was a side effect of the very first vaccine, and the symptoms have never quite cleared up. Perhaps the most remarkable thing about the long-standing unease about vaccines is how little the arguments have changed over the centuries. Jenner’s critics created elaborate cartoons depicting doctors as unfeeling monsters, intent on sacrificing innocent, helpless children. Twenty-first-century anti-vaccinationists write blog posts with titles like “Doctors want power to kill disabled babies.” Nineteenth-century activists claimed that the smallpox vaccine contained “poison of adders, the blood, entrails, and excretion of bats, toads and suckling whelps” and fought for their right to remain “pure and unpolluted.” The modern-day “green our vaccines” movement doesn’t go so far as to say vaccines contain entrails, but they still misconstrue vaccines as containing “toxins” including antifreeze, insect repellent, and spermicide. And, as Paul Offit has pointed out, the current concerns about MMR somehow causing autism are about as plausible, biologically speaking, as the claim, widely reported in the early 1800s, that the smallpox vaccine caused recipients to sprout horns, run about on all fours, and low and squint like cows.

And throughout it all, there have been theories alleging a vast international conspiracy to trump up the dangers of the diseases that vaccines, to hide the truth about vaccine side effects, and to ensure profits for Big Pharma and the government. One nineteenth-century British activist wrote of smallpox, “this infection scare is a sham, fostered, if not got up originally by doctors as a means of raising their own importance and tightening their grasp on the throat of the nation’s common sense which has lain so long paralysed and inert in their clutches.” More than a century later, Barbara Loe Fisher called the HPV vaccine “one of the biggest money making schemes in the history of medicine.”

In some parts of the world, conspiracist fears about vaccines have provoked more drastic measures than simply opting out of vaccination. In parts of Pakistan, local religious leaders have denounced vaccination as an American ploy to sterilize Muslims. According to the BBC, more than sixty polio workers, or their drivers or guards, have been murdered in Pakistan since 2012. (The CIA, it’s worth pointing out, inadvertently fanned the flames of distrust by setting up a fake vaccination program in Abbottabad in 2011, as part of an effort to confirm Osama Bin Laden’s whereabouts by having vaccine workers surreptitiously collect DNA samples from Bin Laden’s family members. When the stunningly misguided plan came to light, it put every vaccine worker in the country under suspicion.) Similar killings of polio workers have taken place in Nigeria. Pakistan and Nigeria, not coincidentally, are two of only three countries in the world where polio remains endemic.

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Of course, not every parent of an unvaccinated child is a raving conspiracy theorist. Some unvaccinated children are too young to have received the vaccine. Others have medical conditions that make vaccination impossible. And many parents who fail to stick to the recommended vaccine schedule do so not out of fear of a Big Pharma conspiracy, but because they lack the time or money for doctor visits, and because they have fallen through the cracks in the health care system. These are the children who rely on “herd immunity”—the protection that comes from most of the people around us being immune to a disease. Parents who consciously choose to deny their children vaccines are putting not only their own child in harm’s way, but other children, too.

And yet it would be a mistake to demonize parents who choose to reject vaccines. They are thoughtful, caring, well intentioned, and often well informed. Thanks to a small but vocal minority of dedicated anti-vaccinists, the Internet is rife with conspiracy-laced misinformation urging us not to trust vaccines. Making matters worse, the media often portrays the controversy with a false sense of balance. Most parents have heard the claims about autism and vaccines, and, according to a recent study, merely reading anti-vaccine conspiracy theories can reduce parents’ willingness to have their children vaccinated.

The science is clear: Vaccines do not cause autism. But conspiracy theories erode our trust in science, allowing controversy to linger long after the questions have been settled.

Excerpted from "Suspicious Minds: Why We Believe Conspiracy Theories" by Rob Brotherton. Published by Bloomsbury USA. Copyright 2015  by Rob Brotherton. Reprinted with permission of the publisher. All rights reserved.


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