The Doctor Who Fooled the World Page 4

  And now there was the doctor without patients.

  The inciting event that led to the phone call was publication of Wakefield’s question-marked Lancet paper that tried to link vaccines with Crohn’s. Notwithstanding the holes in this comparison of incomparables, the dismissive commentary from FDA scientists, and that telltale “?” at the end of its title, two institutions, as trusted as the journal, also forgave its obvious deficiencies to bring it to the public’s attention.

  One was the Royal Free medical school. As part of a shake-up in the capital’s health system, it was scheduled to merge with its more successful near-neighbor: University College London. With hopes for the top job in the resulting combined faculty, Hampstead’s dean, Arie Zuckerman, seized on Wakefield’s appearance in the journal to showcase the talent he led. So, despite thirty-five years of research experience, the dean agreed to chair a press conference.

  Years later, he would call this decision “a disaster.” Seated amid ranks of lawyers and doctors at Britain’s longest hearing into medical misconduct, he voiced his “regret” for what he described as an “almost dramatic” fall in the uptake of MMR. And though the twelve-month decline was only point three of one percent (from 91.8 to 91.5 of children getting the shot by the age of two), this small drop would be the start of a slide that wouldn’t fully recover to pre-Wakefield levels for nearly twenty years.

  In medicine, press conferences were traditionally reserved for breakthrough treatments, or infectious disease outbreaks, not a mid-rank lab researcher’s speculations. But, in a prelude to something similar, far bigger, yet to come, on the morning of Friday, April 28, the hospital’s wood-paneled Marsden Room was laid out with rows of soft-backed chairs, facing a narrow trestle table for speakers.

  Wakefield took his place in a light jacket, patterned tie, button-down shirt, and dark pants. His hair looked oddly thick, as if gelled into a helmet. And, clipped to a pocket on the left side of his chest was a photo ID bearing a Maltese cross logo with, at its center, a lion looking backward.

  His right hand grasped controls for a mechanical projector, which clanked slides to a fabric screen. “Hypothesis,” said one, in white on blue.

  Crohn’s disease is caused by a cell-mediated immune response to persistent virus infection of the mesenteric microvascular endothelium

  This virus may be measles

  That wouldn’t be listed as the day’s top news. The Guardian ran three hundred words, on page 8; the Times, ninety-six, on page 4. But that evening, a second institution—the British Broadcasting Corporation—also had talent to showcase. A new science correspondent, schooled in physics and computers, was granted thirteen minutes on medicine by Newsnight on BBC2.

  “A report in the medical journal The Lancet today suggests that people who get vaccinated run a higher risk of developing debilitating bowel diseases,” declared the show’s anchor—an acerbic, dark-haired interviewer named Jeremy Paxman, whose script exaggerated almost everything. “The implication that vaccination may not be good for everyone in all circumstances flies in the face of a policy which—as our science correspondent, Susan Watts, reports—has become an article of faith.”

  An “article of faith”? Not science, or public health? And Watts’s package tiptoed further down that path. Instead of looking into the mouth of the Lancet report, she stretched her story by adding brain damage to bowel disease. And she fingered MMR (which Wakefield’s paper never mentioned) as a possible cause of both.

  Ms. Two tells me later that she never saw the broadcast. But along with footage from the Hampstead event and a few talking heads, Watts, thirty-two, conflated a group “against vaccinations” (in a meeting that I think was staged for the camera), government warnings over the risks of measles, a segment about an eight-year-old (without saying what was wrong with him), and a studio interview with a woman named Jackie Fletcher, wearing a lens-popping scarlet dress.

  “Now Mrs. Fletcher,” Paxman addressed her. “Your son, Robert, was vaccinated when very small. What were the side effects?”

  “Well, exactly ten days after his MMR,” she replied, “he became extremely ill, and his whole life changed.”

  Apart from the dress, most striking was her hair—dark, shoulder-length, combed sharply from the center—and a piercing, brown-eyed gaze. She explained how her three-year-old, at the age of thirteen months, suffered a seizure and later developed severe epilepsy and learning issues (but not bowel disease, or autism).

  She argued that parents needed more information about such matters and obliquely referred to a group she’d launched sixteen months before, with an ambiguous acronym: “JABS.” This was slang in much of Britain for an injected vaccine, and would cleverly spell out, should anyone ask, as “Justice, Awareness, and Basic Support.”

  But Fletcher, thirty-eight, a former bank clerk, wasn’t 100 percent free of mixed motives. Upon launching JABS, her personal ambition was to sue the vaccine’s makers. But she’d no chance of going it alone. Such a colossal shitfight could only be paid for in Britain by a free legal aid scheme, run by the government. And the rules for this meant that she would need to find hundreds of families with complaints like her own to justify the cost.

  At the time, the triple vaccine wasn’t controversial. Fletcher hoped to disturb that calm. So, after appearing in the same Newsnight package as Wakefield, she got in touch with him at Hampstead and advised others to do the same.

  Ms. Two was the first to get through.

  Ms. Two was then aged forty—two years older than Wakefield—and had grown up in Preston, a once-noted mill town two hundred miles up-country from London. When he answered his phone, she talked quickly in the voicetones of the English Northwest (was sounded “wooz”; some sounded “soohm”), with a confident, insistent style.

  “Please listen to me,” she ordered.

  And listen he did. The call lasted about two hours.

  “She was an extremely articulate woman,” he’d recall years later. “She told a story which made a great deal of sense.”

  At the outset, however, her approach confused him. Had she even got through to the right number? Child Two had been diagnosed on the autistic spectrum—then a fast-evolving cluster of developmental definitions involving peculiarities, deficits, or sometimes frank handicaps in thinking, communication, and behavior.

  But why was she calling a gastroenterologist—and a laboratory researcher to boot? The way he’d tell it, he reacted with surprise. Although schooled in general medicine before specializing in surgery, when he studied at St. Mary’s in the early 1980s, “autism” wasn’t even taught.

  “I’m sorry, I have no idea how to help you,” he later said he responded. “I know nothing about autism.”

  So, then she said (or, at least, he said she said), “My child also has terrible bowel problems. And I believe that the bowel problems and the behavioral problems are related. When one is bad, the other is bad; when one is good, the other is not so bad.”

  And so they continued (reconstructed in hindsight) with a conversation that united their quests. Both remembered that, at some point early in the call, she insisted that her son was vaccine damaged.

  “She said to me, in very clear terms,” Wakefield explained later, in one of countless retellings, “that her normally developing child had received his MMR, and within several weeks he’d started to develop regression.”

  Regression. A word no parent would want to hear in connection with a son or daughter. At the time, it was reckoned that between about a quarter and a third of children with autism were affected by this distressing variant. An infant (usually a boy) appeared to develop typically for around twelve to twenty-four months, but then lost language and skills. Experts linked it to rapid brain expansion and the expression of genes playing out.

  Ms. Two was gobsmacked by the doctor’s attention. She’d never gotten such a hearing before. But Wakefield’s employm
ent contract excluded patient care, so that Friday, he’d plenty of what clinicians lacked: time. He’d no waiting room, ward, or list to attend to. His days were planned much as he pleased. He did next to no teaching and had but one preoccupation: to prove that measles virus, now especially in vaccines, was the undiscovered cause of Crohn’s.

  Ms. Two didn’t know he was a doctor without patients, but Fletcher had briefed her on his interests. The JABS campaigner talked not only of the question-marked Lancet paper but also about his earlier work, in J Med Virol, which claimed the discovery of measles in bowel disease.

  “That was the moment of epiphany,” Ms. Two tells me, when we meet. “I knew when Jackie said that, that I had the mechanism, potentially. That was the turning point.”

  Wakefield listened, ever more eagerly. What she told him dovetailed with his goal. Her son, he said she said on the phone, suffered from abdominal pain and diarrhea—both possible symptoms of inflammatory bowel disease. And these, she deduced, were caused by vaccination, which she also felt was at the root of the boy’s behavior.

  “It happens that I believe he was affected by the MMR,” she tells me she told him. “It happens that he’s now autistic. And it happens that I believe the brain comes secondary to the gut problem.”

  Now that was some conjecture. Wakefield loved it. But then, like him, she was a doctor’s child. Her late father had been a Preston general practitioner, bequeathing her a mind for big ideas, which, that Friday, she rehearsed on the phone.

  Confronted by riddles she was anxious to solve, her quest had led her to ply her son with every kind of remedy. She tried alternative supplements. A hospital staff member suggested the Feingold diet, which sought to eliminate food colorings and additives. She persuaded doctors to give her son massive shots of vitamin B12 (“I tried it out, and it worked,” she tells me). And she joined a parents’ group called Allergy-Induced Autism, where she was introduced to a notion called “opioid excess”: that certain substances in foodstuffs, especially bread and milk, could cause autistic behaviors.

  “It was presented in a cool, lucid way,” Wakefield remembered. “She had clearly thought through the problem very carefully.”

  He listened to her voice. And then he listened more. She talked about “metabolic disease,” “sulfation,” and “pathways.” And the parents’ group, she explained, had many families like her own.

  She sounded too good to be true.

  This mother, it appeared, had everything he sought. So much of it chimed with his thinking. Even the vitamin B12 (mostly absorbed from food in the small bowel’s ileum) chimed intriguingly with his hypothesis. Forget electron microscopes, musty tissue samples, or question-marked epidemiology from ancient research projects, Child Two, and the other kids that this mother’s group knew of, might be living proof that vaccines caused Crohn’s.

  There and then he responded by proposing that she ask for a specialist medical opinion. “My only concern at that stage was for the clinical well-being of this child,” Wakefield argued later, at the same disciplinary proceedings where the dean was questioned. “It is my duty as a physician, and as a human being, to respond to the plight of this mother.”

  So he recommended an Australian named John Walker-Smith—then at another London hospital, four miles south, called St. Bartholomew’s or, more commonly, “Barts.” He was fifty-eight years old, a professor of pediatric gastroenterology, and (after more than two years of being lobbied by Wakefield), was set to move, with his team, to Hampstead. He would bring two consultants skilled in colonoscopy, transforming opportunities for research.

  Energized by the mother’s call, Wakefield phoned Walker-Smith. And on a bright August Tuesday in 1995—ten weeks after the two-hour conversation I’ve described—Ms. Two traveled with her son, then aged seven, eighty-five miles south to London.

  At Barts, the Australian gathered a history from the mother.

  Normal pregnancy, normal delivery . . . Breast fed until 20 months . . . Begun to have diarrhea at 18 months . . . MMR injection at 15 months . . . went downhill ever since

  His account of what she told him was longer and more detailed. But, after examining the boy, Walker-Smith added to his notes a repeated string of three letters.

  Abdomen NAD . . . Anus NAD . . . Mouth NAD

  This meant “nothing abnormal detected.” His final verdict:

  No evidence of Crohn’s disease.

  “The child was referred to me via Andy Wakefield of the Royal Free because of mum’s perception of the child’s illness really began with MMR, and in view of the possible link of measles with Crohn’s disease,” Walker-Smith dictated into a letter to another doctor. The patient’s story, he added, sounded like multiple food allergy, or irritable bowel syndrome. “On examination there is absolutely nothing to suggest the diagnosis of Crohn’s disease.”

  Good news for Child Two. Bad news for the hypothesis. But Wakefield was only getting started. Most doctors are delighted if they don’t find disease. Not this one. He couldn’t let go.

  “She was clear, she was intelligent, the story made so much sense,” he’d say of her phone call, many years later. “She wasn’t anti-vaccine. She’d taken her child to be vaccinated. But he was clearly vaccine damaged, profoundly injured. And that was the sentinel case.”

  FOUR

  The Pilot Study

  John Walker-Smith didn’t want to move to the Royal Free. But he felt that he’d run out of options. As part of the same London shake-up that would see medical schools merge, his department at Barts was threatened with closure. So, at Wakefield’s suggestion, and after years of being schmoozed, the Australian cut a deal, gathered his team, and hit the road north to Hampstead.

  The way he saw it, there was only one hospital: only one in the world at which to practice. Barts. Barts. It had to be Barts. Founded by monks in 1123 and the place that, as the child of a surgeon in Sydney, he heard called “the mother hospital of the Empire.” If he hadn’t found a job there—in 1972—he would have stayed in Westmead, New South Wales, at the Royal Alexandra Hospital for Children.

  “There is,” he’d explain, “a kind of ‘apostolic succession’ from the ancient origins of western medicine on Cos” (a Greek island) “to the Isola Tiberina in Rome” (another island) “and then to Barts in London.”

  Some thought he was a snob. More English than the English. “Plus Anglais que les Anglais,” as they say. Others reckoned he had a touch of the cultural cringe that masked a more intimate insecurity. He maintained, for instance, that it was “improper” and “unacceptable” for Britain to have “abandoned” its colony, Australia, by cutting it adrift with independence.

  He didn’t come cheap. To woo him to Hampstead, they really rolled out the rug. In a six-story zone at the back of the hospital, new offices and a laboratory were built to receive him. A personal ward—Malcolm Ward—was refurbished for his patients. And to lead a new, and magnificently titled, University Department of Paediatric Gastroenterology, his status was dialed up to eleven.

  In conservative dark suits and with scrupulous courtesy, into this domain he strolled, in September 1995, struggling to restrain a vulnerability of character. His appointment was “an event of international significance,” he trilled in the privacy of his autobiography, Enduring Memories. “I was to be a full professorial head, taking my place at university committees with the professors of medicine and surgery.”

  From a second-floor office near the pathology museum, the welcome was no less generous. Ms. Two’s phone call had heralded, in Wakefield’s later words, “the opening of the floodgates” as families with links to Jackie Fletcher’s JABS group, and Ms. Two’s affiliation with Allergy-Induced Autism, spread news about the doctor who listened.

  What he wanted from Walker-Smith and his squad of pediatricians was to do research on these families’ children. Here was an unprecedented opportunity to learn of any impact from persi
stent measles virus in the gut. Conventional wisdom said the bug came and went within weeks, but could it chronically linger to cause Crohn’s disease? And, even bolder, was there a link between the bowel and autism? Ms. Two’s ideas were intriguing.

  Walker-Smith leapt at the chance to find out. Research had long been a passion. At Barts, his department boasted the only lab in Britain dedicated to the subspecialty of pediatric gastroenterology, and he was anxious to keep his hand in. His new collaborator, moreover, was a favorite of The Lancet, which had just appointed a new editor-in-chief—Richard Horton—who’d worked at Hampstead in the 1980s, with a room on the same corridor as Wakefield.

  The professor’s step had a spring for another reason too: the extent to which he looked up to Wakefield. This was a literal fact, since Walker-Smith was short and barely two-thirds of the other man’s bulk. But colleagues also recalled him hailing a “true prince.” And when the Australian came to publish his autobiography (a few weeks before I arrive in his life), he was so under the influence of the doctor without patients that he spoke of “shades” of England’s Princess Diana.

  He is tall, handsome, fluent, charismatic and above all a man of conviction. He is a man of utter sincerity and honesty. In reality the out of fashion term “crusader after truth” would best describe him.

  Meetings were convened, more clinicians enlisted, and a battery of investigations agreed. “Andy Wakefield was keen to organise a research study of this group of children,” Walker-Smith wrote afterward. “My own role in all this was permissive as Andy Wakefield was the research leader, the conductor of the orchestra, a classical role in research for a gastroenterologist. A team was assembled, an ethical committee application was obtained and a pilot study went ahead.”

  The initial plan was to investigate ten such children, either with Crohn’s or a related inflammation. If Wakefield’s hypothesis about the virus was correct, he expected to find it in the terminal ileum—the last few centimeters of the small intestine—the most common seat of the disease.