The Doctor Who Fooled the World Read online

  So here were two immunizations with measles-containing vaccines, which could be matched against the boy’s development. Pediatricians generally said that any perception of a link between vaccines and autism was the result of a simple coincidence. The first dose of MMR was almost always given in the second year of life, and this was the same window in which the first symptoms of autism were most typically recognized by parents.

  But, in this child, the history offered extra ammunition. Given two measles-containing shots (first a single, then the three-in-one), not only was his MMR outside the usual window (and hence not prey to the traditional wisdom), but Wakefield could posit a “double hit,” or “rechallenge” effect, strengthening the impression of a cause. Although Child Four’s story isn’t one that Wakefield ever told, the mother’s letter and their conversations set him thinking. And when two months later the mother wrote to him again—reporting that her son experienced diarrhea on cod liver oil—he suggested she ask her family doctor for a referral letter. Then he phoned that doctor to make sure.

  Thus it was that on a Sunday in September 1996—three weeks after Child Two had been and gone—Ms. Four and her son set off from their home, an affordable little house in a brick-and-stucco terrace, to spend six days at Hampstead.

  Four hours later, they stood at a pair of locked doors on the sixth floor of the Royal Free Hospital. Here was Malcolm Ward: an airy, friendly space, with around a dozen beds in two bright bays, plus en suite side rooms big enough for an extra bed, where a parent could sleep by their child. Toys for all ages lightened the mood, with a circular play table and blue springy mat, laid out for patients’ recreation.

  But despite the ward’s comforting appearance and welcoming staff, Ms. Four remembers her son’s stay as a nightmare. “You believe in doctors,” she tells me, remembering the ordeal. “I just knew they’d do a test to try and find out if the MMR caused autism. That’s why I went. If I’d known they were going to be so invasive with [my son], I wouldn’t have went.”

  It made nothing easier that she arrived in distress. By the time she met Simon Murch, who was to perform the ileocolonoscopy the following morning, she was so drained by the journey, and so hopeful for his help, that he would remember she broke down sobbing.

  The regime was the same as it was for Child Two. A history was taken from the mother, and the boy’s bowel prepped. Then, at 8:30 a.m. Monday, he was trolleyed to the endoscopy suite, four floors up, and sedated for the vital procedure.

  Rectum . . . colon . . . valve . . . ileum.

  And there they were again: those swellings.

  Protruding through mucosa, so visible on the monitor, glistened those nodules that had shocked Ms. Two. “Hyperplasia” was the word that doctors used. “Ileal lymphoid nodular hyperplasia.”

  Ms. Four noted in a diary that the scoping took an hour. Then she documented days of misery. As the battery of tests Wakefield wanted was attempted, staff documented Child Four’s “inconsolable crying.” He fought with nurses. Blood was found in his stools. He pulled the mattress from his bed, repeatedly vomited, and was “tearful throughout” a procedure.

  Wed morning. 9.15 to xray for barium meal, but [my son] wouldn’t drink the chalky drink. Back to ward tried holding him down & using syringe—but [he] fought them. Tried tube in nose no good so gave up. Then they decided to sedate him for it then changed their mind. Called off.

  Such was an example of the experience families went through in this phase of their desperate quests. They would have done anything for answers about their kids. And Child Four had it bad: two days after scoping, this profoundly autistic nine-year-old collapsed.

  “He collapsed in the corridor,” Ms. Four tells me. “There was nobody around, and I was trying to get back to the lifts. I’d gone down a couple of floors, I think, to get a paper, or something like that. He was walking along and, all of a sudden, just collapsed. There was nobody around, and I couldn’t get any help. I was panicking a bit, and then, I can’t remember how much further, he collapsed again.”

  In all, he collapsed three times that day, she remembers. Other children in the study also suffered. It took three people, for instance, to hold down Child Two, merely for a standard blood draw. A four-year-old experienced such headache after lumbar puncture that, following discharge, his mother called an emergency doctor. And Child Five, aged seven, fared so badly from the same test (which had taken cerebrospinal fluid under general anesthetic) that he was rushed by ambulance from his home to a local hospital and kept for two days’ observation.

  The mother of that last boy initially contested that a spinal tap was even needed. “We said, ‘No,’ you know, we thought that it was not relevant,” she says. “It was only because they sort of begged that we decided to.”

  Child Four escaped the needle into his spine. After electroencephalogram and magnetic resonance imaging—both performed on the Thursday, under sedation—the attempt at lumbar puncture was abandoned. The boy was so ill, and repeatedly vomiting, that on Friday he was bundled with his mother into a taxi, and driven 280 miles home.

  That Friday evening, Wakefield addressed a JABS meeting in London, with Newsnight’s woman in scarlet—Fletcher—and Barr, the lawyer in the newspaper clipping that alerted Ms. Four to MMR. “I found your short discourse both informative and interesting,” the mother of a six-year-old wrote to Wakefield afterward, before bringing her son, Child Twelve, to be scoped.

  Two weeks later, back in Tyneside, Ms. Four received good news. Notwithstanding the ileal lymphoid hyperplasia, blood tests for bowel disease came back normal. And the hospital’s pathologists (strictly, “histopathologists,” since the study of tissue under a microscope is histology), who’d examined her son’s biopsies for evidence of disease, found “no histopathological abnormality.”

  So that was that for Ms. Four and her son, she thought. But then something peculiar occurred. Nearly six months later, John Walker-Smith, changed the boy’s diagnosis.

  Although Child Four hadn’t returned for any further tests, and the findings of normality had been reviewed, and agreed upon, between pediatricians and pathologists, the Australian professor reclassified the results: from apparent bowel health to disease. Now, he said, the boy suffered from “indeterminate colitis,” which to gastroenterologists meant a serious, potentially life-changing condition, but at the specific time-point couldn’t be positively diagnosed as either ulcerative colitis or Crohn’s.

  The little boy, however, didn’t have either. And neither, it was realized, did Child Two. Despite the excitement after the sentinel case’s scoping, he’d been sent away for two months on a special liquid diet, scoped again by a doctor not involved in the research, who reported a “complete return to normal.” Like Walker-Smith had concluded, while still at Barts Hospital, Child Two suffered from a food intolerance.

  Nevertheless, on a Tuesday in March 1997, Walker-Smith wrote to Child Four’s local doctor. In light of the “histological finding of a colitis,” he explained, he recommended prescription of a powerful anti-inflammatory drug—mesalazine—often given to patients with Crohn’s.

  Facing charges of misconduct eleven years later, Walker-Smith would admit that he couldn’t explain the provenance of his revised diagnosis. He’d made no entry in the boy’s clinical records. And mesalazine was by no means a trivial pharmaceutical, carrying special “black box” warnings in drug reference manuals of potentially serious or life-threatening reactions. They were reactions, moreover, of which a nonspeaking, developmentally challenged child could hardly communicate concern.

  The [Committee on Safety of Medicines] has recommended that patients receiving mesalazine, olsalazine or sulphasalazine should be advised to report any unexplained bleeding, bruising, purpura, sore throat, fever or malaise that occurs during treatment. A blood count should be performed and the drug stopped immediately if there is suspicion of a blood dyscrasia.

  Ms. Four wasn
’t convinced that the drug treatment was even necessary. She says a good diet prevented diarrhea. But, as recorded in her documents contemporaneously, she checked her feelings with a doctor at the hospital: a man who at that time she trusted.

  Dr Wakefield told me the medicines would dampen inflammation [and] it also reduces behaviour & Autistic problems. I was not willing to give [my son] the medicines as I am so against them. He advised me strongly to try & get 2 other mothers to talk to me about results.

  In the end, she gave in to what was evidently an experiment. But when given the drug, her son developed abdominal pain, and his behavior didn’t improve. Mesalazine was a “total disaster,” she tells me. “I was quite shocked,” she says of her reaction when she saw the package information. She says, “It had ‘colitis’ on it . . . where has that come from?”

  Back at Hampstead, however, Wakefield’s team was euphoric. If not close to collective hysteria. He was now speculating that autism itself was an inflammatory bowel disease, while Walker-Smith was prescribing mesalazine, olsalazine, or sulphasalazine to almost every child enrolled in the project.

  SIX

  A Moral Issue

  To unleash epidemics of fear, guilt, and disease should be expected to require preparation. From the concrete castle overlooking Hampstead Heath, the ground was laid for Wakefield’s signature accomplishment—aided, incredibly, by a hospital and a medical school—many months before his study of eleven boys and one girl was formally presented to the world.

  Since the Newsnight broadcast, his profile had soared. The Sunday Times Magazine led the national press with a five-page feature (“A Shot in the Dark”), showcasing him, Jackie Fletcher, and the lawyer, Richard Barr. The ITV network ran a thirty-minute prime-time Big Story report on his claims linking MMR with Crohn’s. And at the Mail on Sunday, Lorraine Fraser, who’d covered JABS’s launch and Child Two’s scoping, began a determined campaign as Wakefield’s champion.

  But all this would melt away as historical small change. By the summer of 1997, he was riding high on the results of the pilot study scopings—especially the frequency of the swollen glands—and what parents had reported at the hospital. In case after case, they’d told John Walker-Smith’s team that their children had developed behavioral problems and bowel complaints shortly after they received MMR.

  By convention, research findings were meant to be kept confidential until peer reviewed and published in a journal. But after being seeded by leaks to a doctors’ magazine, Pulse, a barrage of media coverage erupted from Hampstead in August, linking the three-in-one with both autism and Crohn’s.

  Kill or cure?

  Both of my little boys are autistic and my wonderful marriage is in tatters

  Crying shame of the vaccination victims

  Wakefield was quoted, speaking of five “forthcoming” papers. He said they “clearly confirm our suspicions.” And further boosting interest in the study’s results was a more senior figure, from the purple of the medical establishment. This was the professor of gastroenterology Roy Pounder, fifty-three, who was a council member of the Royal College of Physicians and harbored medicopolitical ambitions. Ten years before, he’d hired the doctor without patients, and he’d mentor him through the rest of his career.

  “I am very convinced,” Pounder told BBC television that August. “Almost all” the data were “biologically plausible,” he said, demonstrating that “the virus is there.”

  That was in public. Meanwhile, in private, not one, but two papers were submitted to The Lancet, reporting the pilot study’s results. One was clinical, titled “A New Syndrome: Enterocolitis and Regressive Behavioural Disorder,” with “neuropsychiatric diagnoses,” “findings,” and suchlike from Wakefield and eleven coauthors. The other was “scientific,” mostly immunohistochemistry, with a splash of molecular data thrown in.

  The performance was bravura. He’d done it again. Even the H. pylori pioneers, Robin Warren and Barry Marshall, never had a pair of papers in The Lancet. Now, as the father of four children (the latest, Corin John Ogilivie, aged four months), Wakefield waited on the journal’s decision.

  There wasn’t much doubt about what was to follow. The worldly winds were all at his back. Should the Lancet’s traditions not prove sufficient, the summer’s burst of publicity was sure to grab Richard Horton, its ex–Royal Free editor-in-chief. Vital calculations of his journal’s impact—based on its performance in attracting citations by researchers—had shown it slipping against the market leader, the New England Journal of Medicine.

  Then more luck, in the desk editor Horton assigned to wrangle the manuscripts into print. This was a waggish family doctor, John Bignall, fifty-four, who was then on a roll after fast-tracking a case series of a rare brain disease (new-variant Creutzfeldt-Jakob). He was the champion of a policy that colleagues called “Bignall’s rule”: that if a submission was discussed for more than ten minutes, then it had “interest” and ought to be run.

  For every manuscript accepted, however, scores were spat back. Success couldn’t be taken for granted. Much would depend on the peer review process. And, once again, Wakefield’s winds blew warm. In mid-November 1997, Bignall posted both submissions to a professor of pediatric gastroenterology named David Candy, eighty miles southwest of London. He’d never reviewed papers for The Lancet before, and his career mentor was John Walker-Smith. “I knew,” Candy tells me, “that anything by John would be well written and reliable.”

  Small world.

  The hospital and medical school were already preparing. This would be their biggest moment in decades. Wakefield and Pounder met with managers from both and persuaded them to recommend another press conference, even bigger than for the question-marked paper. “Dr. Wakefield says that he was contacted by every major news organization,” the hospital’s press officer, Philippa Hutchinson, told Arie Zuckerman, the dean, in the wake of the summer storm of publicity.

  A tall, broad man, with owl-sized glasses and the stiff demeanor of one striving for eminence, Zuckerman, sixty-five, wasn’t only a professor of microbiology and editor of J Med Virol. He was also a director of the World Health Organization and a pioneer of hepatitis B vaccines. So to be, in his own mind, on the safe side, he ruled that the event shouldn’t be described as a “press conference” but a “briefing,” focusing the media on certain “gastrointestinal changes” reported in the clinical study.

  He would regret that colossal misjudgment forever. He assumed that, as dean, he should command the media, placing Wakefield’s contributions in context. And he assumed that a press release his school issued in advance, describing the findings as “controversial,” would dampen the ardor of reporters. “Until and unless the appropriate national and international authorities and the World Health Organisation decide to review the policies relating to MMR immunisation,” this said, “the Royal Free will continue to support the current programme.”

  Even as Zuckerman stressed caution, however, a PR company was hired and months of planning went forward. To hit the ground running (in an era when battery size still limited the convenience of mobile phones), extra landlines were installed for reporters to call their desks. Mechanical answering machines were ordered to field the public reaction. A rehearsal was scheduled to smooth the choreography. And an unprecedented twenty-one-minute package of video clips was ordered to maximize TV impact.

  Nobody involved could seriously argue that they couldn’t foresee what would happen. Public fear in the wake of the question-marked paper had now shaved one point from the uptake of MMR: a big figure when compounding year on year. Within days of the Pulse report, the hospital was “inundated” (Wakefield’s word) with families asking about tests. And, in the video clip package, commissioned by the hospital, he claimed that what he’d found in the dozen scoped kids warranted the triple vaccine to be “suspended” by the government, in favor of single shots.

  “There is sufficient anxiety i
n my own mind for the long-term safety of the polyvalent—that is the MMR vaccination in combination—that I think it should be suspended,” he said in one of four variations of the same message in the video. “My own opinion, again, is that the monovalent—the single vaccines; measles, mumps, rubella—are likely, in this context, to be safer.”

  His mentor, Pounder (hoping for advancement at the college of physicians), warned the government of what was coming. Although the second, “scientific,” study was rejected by The Lancet (in a later lawsuit Wakefield claimed that he never even kept a copy), the clinical paper was certain to provoke uproar. “We believe there is only a limited amount of monovalent measles vaccine available at the present time,” Pounder wrote to England’s chief medical officer, Kenneth Calman, “and your department may wish to investigate this potential problem.”

  But the professor of gastroenterology also had concerns closer to home: not least any advantage to be gained for his department as a result of his protégé’s publication. Under the national Research Assessment Exercise, government money was meant to filter to the most successful units—with publishing, again, a key measure. In short, that paper might not only mean money for the medical school, but money for gastroenterology. Indeed, years later, when I ask a scientist who’d worked at the Royal Free, “what explains the phenomenon” I was by then investigating, she replies with two words: “Roy Pounder.”

  And so it was that all was ready—with an overflow pressroom, and coffee and biscuits for fifty—when on Thursday, February 26, 1998, at shortly after 10:00 a.m., the latest Wakefield paper was released.