In a Different Key: The Story of Autism (64 page)

It was a rhetorical choice that would alter his career forever. Nearly every virologist, pediatrician, and public health official in the world knew the MMR vaccine to be a superb example of applied science and a lifesaver; it had driven all three of the targeted diseases into virtual oblivion. If Wakefield wanted to make this a moral issue, the science behind his claims had better be staggeringly persuasive.

But there was a second constituency that needed a good deal less persuasion. Britain had a
storied history of vaccine skepticism, whose adherents had been at odds with the public health authorities since the late nineteenth century. By the late twentieth century,
they were a fringe and not very successful force, given that the British public overwhelmingly supported the practice of vaccination. This was demonstrated with
immunization rates above 90 percent for most vaccinations in the mid-1990s, even though
Britain’s program was not mandatory, the way it was for public school attendance in the United States. While some vaccine opponents flatly questioned the necessity of vaccines, suspecting pharmaceutical companies of scheming to make a market for themselves, others conceded vaccines’ effectiveness but sought more evidence of their safety. Still others nurtured a philosophical hostility toward vaccines. They resented the state’s forcing any person to submit to any invasive procedure, regarding it as an affront to individual liberty.

Of course, it could not be said that vaccines have never caused harm. Vaccines’
most ardent supporters acknowledge that the minute risk exists, for any given individual, of an adverse reaction. This is true with any pharmaceutical product. Regardless of the precautions taken, there will always be individuals who, because of their unique biological makeup, will have a toxic reaction to a drug or a device that has generally been shown to be safe. These outcomes do not mean that the product is defective. Penicillin is not considered a defective antibiotic because a small subset of patients can have powerful, even fatal, allergic reactions to it. Such susceptibility cannot be predicted or screened for. Society accepts this imperfect situation because statistics show that penicillin does good for far more people than it will ever harm.

When an immunization program is launched, it is a given that
some adverse effects will occur that were not discovered during clinical testing, because they are so rare and so specific to the individuals who suffer them. Public health professionals who promote mandatory universal immunization know this, but they believe that the minuscule risk is tolerable, as well as necessary. Not getting vaccinated exposes that same individual to the much more probable danger of contracting the disease the vaccine is targeting. Moreover, the more people who are vaccinated, the greater protection there is for the population as a whole.

But this logic offers no solace to those with the bad fortune to make it into the injured group, when the mandatory needle in the arm is the thing that makes a child blind, or deaf, or paralyzed for life. In those rare instances, a family’s anguish is compounded by the fact that there is rarely proof that the injury is the direct result of a vaccine. Usually, the most convincing evidence, from the family’s point of view, is timing: the observed fact that the first appearance of an affliction appears to coincide almost exactly with the administration of the vaccine—within days, or even hours. But coincidence does not prove causation. And that was all Wakefield had—“a general association in time”—to connect the MMR vaccine to the children’s autistic behaviors.

Still, to the twelve families whose children took part in his study, the lack of convincing data to support Wakefield’s claims was beside the point. They felt that Wakefield was the first scientist who had
ever really listened to them. No one else had treated their ideas about the connection between the MMR shot and their children’s illnesses as valid or meaningful. Moreover, Wakefield was a gastroenterologist. An extremely troubled digestive system was one of the two ailments common to all twelve of the children; the other was autism. As the families saw it, these two things had to be related, having started at about the same time.

It was a theory they could not get their own doctors to take seriously. Some parents felt scoffed at by the medical system. But this man in a lab coat—which Wakefield would don for some of his TV appearances—was telling the world that they were not crazy or naïve
or ignorant. He was framing it as a matter of good and evil, right and wrong—on behalf of their children, whom the parents believed had been wronged for life. In that instant, under those TV lights at the Royal Free, a champion emerged from inside the medical world that had, until then, spurned their insights.

But now, there was the spectacle of the other doctors at the press conference pouncing on Wakefield’s warning, falling over one another to vouch for the MMR vaccine’s safety. Over the next couple of days, similar statements would be issued by a slew of British medical authorities, with vaccine experts in the United States joining them, and the World Health Organization declaring itself
“frankly alarmed by suggestions there is a causal relationship.”

To the families, to Wakefield, this phalanx of statements in support of MMR only proved what they were up against—a wall of well-entrenched interests, dead set against even entertaining the possibility that the MMR vaccine might have ill effects. Any critique of his work came to be seen as a villainous personal attack on a good man trying to do the moral thing. It was also an attack on the families, their children, and any future child who might receive the MMR vaccine. They circled protectively around this young rogue researcher. Now it was war.

And “vaccines cause autism” was their rallying cry.

—

A
LTHOUGH
W
AKEFIELD NEVER
actually spoke the words “Vaccines cause autism” in February 1998, that was what the public heard over the coming weeks and months. In a nation already jumpy about vaccines, headlines using words like “alert” and “ban” about the MMR vaccine triggered alarms that would never quite die down again. It was not that reporters bought into the theory as fact. All the stories pointed out that Wakefield was an outlier and that the measles vaccine had been a lifesaver. A report on Independent Television News (ITN) in the UK
provided numbers as well as an animated graphic: compared with the 800,000 measles cases reported in 1950, there had been only 4,170 cases in 1997. A well-known immunization authority, Dr. Robert Aston, was also shown reminding viewers that “immunization is the best thing, bar none, that has come out of medical science.”

But the autism parents who appeared in the same news reports, especially on television, were a lot more compelling than the experts and their numbers. The ITN coverage portrayed a number of attractive kids who had autism, whose mothers explained, with near certainty, that it was the “jab,” in British parlance, that had made their children autistic. “It’s Russian roulette,” said one mother. “You take a child down for the jab, and which one’s going to have the disorder?”

Wakefield’s press conference had been at the end of February. By the middle of March, 1 out of 5 general practitioners in the UK had at least five families in their practice who either refused vaccination altogether or insisted on getting the measles vaccine separately. What was more, the
Guardian
reported, some doctors were starting to share the parents’ doubts. A Dr. Nagle in North London was said to be
“advising parents against the booster MMR given to children at about four years old.”

It was a self-perpetuating cycle. The greater the number of parents who decided to refuse the MMR, the more the news media saw a valid trend story. By June, only four months after Wakefield published in
The Lancet
, MMR vaccinations had dropped almost 14 percent in South Wales.

It was a rare story that held the public in thrall not just for weeks or months, but for years. Through the rest of 1998 and into 1999, the groundswell of resistance to the MMR continued. While parents circulated petitions against the vaccine, Parliament debated its purported dangers. In 2001, the fear was still rampant, and Prime Minister
Tony Blair stumbled into a political buzz saw. Having publicly encouraged parents to get the MMR for their kids, he then refused to say whether his twenty-month-old son had received his.

During this period, Wakefield’s career went through its own tumult. He had continued with his research even as controversy bloomed all around him, parrying in print all the researchers who disputed him, and recording new cases of his syndrome—
scores of them. By December 2001, nearly four years after the publication of the pivotal article on MMR, he had published nearly a dozen further studies on bowel disease, measles, and autism. These appeared in a broad range of well-regarded, peer-reviewed journals.

The vaccine scare made Andrew Wakefield famous and, in some circles, beloved. He was flooded with interview and speaking requests, and he traveled the world by invitation, more identified than ever with the idea that vaccines were the cause of autism. In 2000, he was brought to Washington to testify about his work on MMR before Congress. He appeared on CBS’s
60 Minutes
to discuss his work that same year. Throughout, and though repeatedly challenged, he refused to rescind his recommendation that parents avoid the MMR pending proof of its safety.

His use of his increasingly high profile to spread the wrong message finally proved too much for Wakefield’s employers. In November 2001,
Wakefield resigned his position at the Royal Free Hospital, but only after being told he had no choice in the matter. “I can only assume,”
he told
The Lancet
, that his research “was politically incorrect.” With the
Sunday Express
, he struck a now-familiar posture: “The medical establishment may not have the stomach for it, but I cannot abandon these children….
I’m not going to whinge, I am going to move on.”

His departure from the Royal Free did nothing to set the public’s mind at ease about vaccinations. On December 5, the
Guardian
reported that the MMR vaccination rate in London had
fallen to 79 percent, when the ideal was 95 percent or above. Scotland’s would fall to 86 percent by 2003, compared with 94 percent in 1995. “For now,” wrote reporter Linda Steele,
“a question mark still hangs over the safety of MMR.”

Nor did Wakefield’s dismissal damage his reputation in the eyes of his followers. After losing his job, he began spending more time in the United States, supporting his work and his family through private funding. His story, meanwhile, received the ultimate media accolade when it was
made into a feature film for British TV in 2003, viewed by 1.6 million people. Wakefield was portrayed by the dignified, warmhearted Hugh Bonneville, who would later play the patriarch of the Crawley family on
Downton Abbey
. Titled
Hear the Silence
, the film depicted a dystopian medical universe in which most doctors and scientists are hidebound, cynical, cowardly, or scheming—with Wakefield as the pure-hearted, truth-seeking scientist-detective who
went wherever the data led him. Asked early in the film whether he believed that the MMR caused autism, Bonneville as Wakefield paused, looked off into the middle distance, and responded, “I wish I knew.” But the makers of the film made their views clear; the answer was an unqualified yes. Actress Juliet Stevenson was typically spectacular as the mother of a small boy with autism, who spent most of the film battling one doctor after another, each of whom coldly dismissed what she had to say. “Something happened to him!” she cried out in frustration to each. “That’s what I know in my heart!” By the film’s end, when Stevenson stood up to her pediatrician with the words “Fuck you!”—the second-to-last line in the movie—motherly instinct had been fully vindicated as the best kind of evidence there is.

The trouble was that mainstream medicine lacked a convincing rejoinder. Certainty requires data, and collecting data takes time. Until then, no one other than Wakefield had looked specifically at whether autism and the MMR were linked. In other words, the experts’ best evidence for safety was the
lack
of evidence of a lack of safety. Unfortunately, that did not answer the question parents really wanted answered, which was, “Where’s the evidence that MMR does
not
carry the risk suggested?”

The early lack of a convincing answer was a boon to Wakefield. It also gave a long head start in Britain to the popular nightmare that autism could be caught from a needle. Even Wakefield acknowledged the lack of scientific proof for such a link—but thanks to him, the British press, and human nature, the connection was held together by something else.

Fear.

—

I
N THE YEARS
since Wakefield’s initial press conference, that fear had long since spread to the other side of the Atlantic. Throughout 1999 and into the spring of 2000, the US Congress had held at least three hearings on vaccine safety. In the first couple of those, autism was mentioned only in passing. At the hearing held in April 2000, however, by the House Committee on Oversight and Government Reform,
the epidemic story came into its own as a full-time political narrative, where it soon became rare in Washington for the words “autism” and “vaccines”
not
to be spoken in the same sentence together.

In that April hearing, the
chief witness was Andrew Wakefield, making his American debut. It was a star turn. His British accent charmed, and the slides and data he brought along caused alarm. He reported finding still more cases of children with autism, stomach problems, and measles virus. “We have now investigated over one hundred and fifty children,” he announced. He had found the syndrome in 146 of them. “The great majority had autism.” In front of cameras and reporters from the nation’s top networks, he spelled out what it all meant: “The story as told to us and which we have an obligation to report is that the majority of children regressed following a period of normal development in the face of MMR vaccination.” As always, he added a footnote: “That does not mean it is the cause of the disease.”