The Doctor Who Fooled the World

by Brian Deer

  Strangely, however, such an experience with MMR wasn’t listed in the box on page 5. A week after Child Six’s shot, the report listed “fever,” and “constant cold and blotchy rash.” It said this lasted for two weeks, adding without timings, or specific detail, “Behavior became aggressive.”

  She wouldn’t forget a scream that stalked her dreams. And it was a recognized vaccine reaction. It was noted in package inserts (“persistent screaming”) and written-up as a rare phenomenon. A team from California and Maryland even crunched numbers: publishing in the prestigious journal Pediatrics with data on nearly sixteen thousand injections. They found 488 kids with persistent crying in the next forty-eight hours, and seventeen with a “high pitched, unusual cry . . . usually described by parents as a high-pitched scream.”

  This matched the mother’s story. Picture perfect. The only snag with that picture was this: the package insert and the Pediatrics paper weren’t reporting on MMR, but an entirely different vaccine. The scream was a known reaction to DTP, the diphtheria, tetanus, and pertussis shot. It was alleged in the Loveday trial and even described in media coverage, as the Times reported in October 1987:

  After the third inoculation, the baby screamed continually for two days. It was not a baby’s normal cry, but a high-pitched scream.

  “The high-pitched scream is pathognomonic of DTP,” confirms David Salisbury, the by-now retired civil servant and pediatrician whom Wakefield phoned after the brand withdrawals. “Anyone who said that happened within forty-eight hours after MMR, in my mind, either made it up, or they read it somewhere. This is a classic DTP reaction.”

  I also remembered the “high-pitched scream,” like I remembered “fourteen days.” They were central, pivotal, unforgettable features of the case made against DTP. But, just as Wilson’s fortnight seemed to migrate into Wakefield’s, so the distinctive screaming appeared to move between vaccines in the account of Child Six’s mother.

  An easy mistake, if you didn’t know the science. You might not know how different the vaccines were. The pertussis shot, at the time, was a quite dirty product: a big whole-cell bacterium, killed with formalin. It was known for reactions within hours. But the measles vaccine (like mumps and rubella) was a “live virus” shot, in which the components took days to grow in the recipient’s tissue before being capable of doing much at all.

  The Lancet paper included no screaming. Yet—getting weirder, as this story always will—a box in Child Six’s report did. Deepening the mystery of his mother’s recollections, it noted an incident—before she heard of Wakefield—that had allegedly occurred ten months before MMR, when the boy was only four months old.

  After 3rd DPT vaccination [Child Six] was described by [his mother] as crying too much and having a high pitched scream 5 minutes post vaccination. This persisted for 12 hours.

  So, from the report, it appeared that it was DTP, and that not only had Wakefield changed the developmental diagnosis, but the mother had changed the vaccine.

  There was plenty more in the stack that De Silva dumped on the table. So I fed her my impressions, and to Channel 4 executives, who planned to bring Wakefield to trial. We agreed that what we needed was an order for him to produce the twelve children’s complete, unredacted records, and we made that application to the judge.

  Ms. Six came to court to try to block us. But Justice Eady brushed her aside. “I’m not having the parents telling the parties who can have what documents,” he said in November that year, from the bench of Court 13. “It seems to me clear that these medical records are central.”

  And so it transpired that on Tuesday, January 2, 2007, I was back at Wiggin’s offices, reading the content of two hefty crates of clinical notes—while a lawyer supervised me at the table.

  My conclusion that day was that Wakefield was finished. But I can’t tell you what I saw to make me think so. Unlike the poorly redacted reports (which would be unsealed in the United States, when he unsuccessfully sued me again, in Texas, just to tell people he was suing), the full notes must remain unreported.

  I didn’t then know how it would all turn out. But heading home that evening, having studied the kids’ notes, I felt the drudgery of the litigation lifting. Not only had I learned many secrets about that paper, but the past weekend I’d had a Sunday Times exclusive: revealing the enormous, undisclosed sums of money in Wakefield’s deal with Barr.

  MMR doctor given legal aid thousands

  It filled most of page 12, with pictures.

  But I’d hardly got home for the six o’clock news when my landline rang. It was De Silva. As I’d sat at Wiggin’s offices with the medical records, Wakefield’s lawyers had filed a Notice of Discontinuance, abandoning his claims that my journalism defamed him and agreeing to pay our costs.

  TWENTY-THREE

  Sesame Street

  A little girl waits on her favorite video. She can’t take her eyes off the screen. She knows that, any moment, the music will start, and Big Bird, Cookie Monster, et al. will appear where so often they’ve appeared before. She’s black-haired, Latina, dressed in pink and white, anxiously stretching from a sturdy high chair. Her name is Michelle Cedillo.

  Her mother, Theresa, watches through a camera, recording on magnetic tape. And through that camera’s lens, I’m watching her too: from a different place and time. Two and a half thousand miles east, and nearly twelve years later, I’m seated amid classical, dark cherry splendor, in room 201 of the Howard T. Markey National Courts Building, inside the green zone surrounding the White House.

  Today is a session of “vaccine court”—a branch of the US Court of Federal Claims—now assembled to evaluate Wakefield’s. Around me, in a chamber as cold as winter stone, sit lawyers, parents, experts, and public, facing a swing-gate bar and a raised, paneled bench, from which three adjudicators, or “special masters,” gaze at monitors.

  Like “fourteen days,” and the “high-pitched scream,” this court was a legacy of the DTP crisis, imported to the United States in April 1982 with NBC’s Vaccine Roulette. In a more litigious culture than John Wilson ever knew of, the program had spurred an avalanche of lawsuits: from three filed in America in 1981, to more than two hundred per year four years later. Most manufacturers abandoned production, and in November 1986, Ronald Reagan signed a law reserving the disputes to the federal special masters and a no-blame compensation scheme.

  Since the twelve-child paper—now nine years before—nearly five thousand families had been recruited across the country, from which lawyers had picked Michelle to lead. She was America’s Child Two: their best-chance test case for an unchanged proposition that persistent measles virus from MMR was responsible for an epidemic of autism.

  The music starts. Michelle reacts. And a gentle French accent offers calm guidance on what everyone in the room can see. “In the clip you see how she’s fascinated by Sesame Street,” says the Montreal autism specialist Eric Fombonne, giving evidence on day six of this twelve-day hearing in June 2007. “She gets very excited. We see all this sort of overflow movement—also hand movements, which are like flapping and stereotypic.”

  Six months have passed since Wakefield escaped his libel trial, but his claims have now made it to this courtroom. This is Cedillo v. Secretary of Health and Human Services: the latter being liable, on behalf of the government, for any appropriate compensation that may arise. If Michelle wins, Department of Justice staff calculate, the bill could be $15 billion.

  Theresa, the mother, first heard of Wakefield in 1997. That followed his debut on the front of Bernard Rimland’s journal, the Autism Research Review International. Then, in December 1998 (just two months after Richard Barr filed his lawsuit), she lodged a claim under the vaccine court scheme, charging that her daughter was a victim.

  Primed to believe by the twelve-child paper, she finally met Wakefield in San Diego in October 2001. Much like the journey of Jane Johnson to Thoughtful House, Th
eresa attended a conference of Rimland’s Defeat Autism Now!—at which the charismatic British doctor spoke. He told parents of his discovery, “autistic enterocolitis,” and all but said that he’d found the cause. Theresa, standing, listening from the back, scurried after him as he exited the hall.

  Under cross-examination on day two of the court hearing, she evidenced how that contact blossomed. “Have you ever exchanged emails with Dr. Wakefield?” she was asked by Lynn Ricciardella, counsel for the Justice Department.

  “Yes, I have,” Theresa replied from the witness stand: a chair between the bar and the bench. She was a well-presented lady, then forty-five, with spectacles, bouncing earrings, and a mop of black curls. Sophisticated. Cool. Like Ms. Two.

  “Approximately how many?”

  “Boy, I don’t have a number,” she said.

  “More than ten?”

  “Yes, more than ten.”

  “More than fifty?”

  “Probably more than one hundred. But less than one hundred fifty.”

  The girl in the high chair—Theresa’s only child—was born in the hospital near their home in Yuma, Arizona: twenty minutes from the Mexico border. She received a hepatitis B vaccine on the day of her delivery—August 30, 1994—followed, one month later, by a second.

  At two months, she got three shots: the triple DTP plus Haemophilus influenzae (both by injection), and a polio immunization by mouth. She was given the same again the following December and March, and on the final occasion a third hep B. In September 1995, she was vaccinated against chicken pox. And on Wednesday, December 20, at the age of fifteen months, she received her MMR.

  This was the typical United States schedule at the time. Her parents’ case was that all of it injured. Theresa and her husband, Michael Cedillo, submitted through lawyers that thimerosal, the mercury-based vaccine preservative (in those days in the hepatitis and DTP shots) caused immune system problems that left Michelle vulnerable to the live measles virus in MMR.

  The hearing was prepared around that proposition. But in the event, thimerosal was sidelined. Whether or not other vaccines seeded Michelle’s problems, what her lawyers would call the “most critical issue” was a test for the virus in a gut biopsy sample at the Coombe Women’s Hospital, Dublin.

  “There is one key factual allegation,” the presiding special master, George L. Hastings Jr., would explain. “All of the petitioners’ causation theories depend upon the validity of certain testing that purported to find evidence of persisting measles virus in the biological materials of Michelle, and a number of other autistic children.”

  Wakefield was listed as the proceedings’ star witness. And with John O’Leary’s tests at the core of the case, you might expect both men to be here. They’d impugned vaccinations given to millions of children. But neither has come to explain.

  In their place, the hard evidence was a sheet of white paper. Literally, one sheet of paper. It was dated March 15, 2002, and headed “Report for Measles Virus Detection.” Signed by O’Leary for his company Unigenetics (from which Wakefield had resigned as a director the year before), it gave Michelle’s name, date of birth, patient identification numbers, and stated:

  Positive for measles virus

  Nothing evidenced that this virus (if any) came from a vaccine. There was no strain given, or molecular sequence. Nor were there documents detailing the methodology—on an instrument that, as the manufacturer warned its customers, was “not for use in diagnostic procedures.”

  There were a few further details. The Dublin lab said it probed for strings of measles F gene (which coded little lumps that protruded from the bug). The sample, from Michelle’s ileum, was reputedly “satisfactory.” And the Apple computer attached to O’Leary’s 7700 apparently reported the amount found thusly:

  1.67 × 10^5 copies/ng total RNA

  On learning this, Theresa had felt relief: validated, just like Ms. Two had felt after seeing the lymphoid hyperplasia on the endoscopy suite monitor when her son was scoped at Hampstead.

  “I was overwhelmed,” Theresa told the three special masters. “Because it was confirming—confirming to us—what we thought we had seen in her.”

  This certificate, however, confirmed nothing to scientists with long experience of measles virus. The quantity 1.67 × 10^5 copies meant 167,000 virions per thousand-millionth of a gram of RNA, and implied overwhelming infection.

  “This number would predict that all of the cells in this section of the ileum were infected and actively producing RNA,” wrote Diane Griffin, chief of molecular biology at the Johns Hopkins Bloomberg School of Public Health, in a report for the Justice Department. The Coombe figure, she said, was “suspiciously high,” and “wasn’t biologically plausible.”

  Meanwhile, Bertus Rima, head of biomedical sciences at the Queen’s University, Northern Ireland, who’d earlier written a report for Barr’s failed lawsuit, commented that, in the presence of such a quantity of virus, Michelle’s cells would be so “stuffed” with measles RNA there wouldn’t be room for vital cellular components.

  The Cedillos’ experts had nothing in reply to that. And they faced more on the molecular front. Although courts everywhere accepted lab results as evidence—in everything from product liability to driving while intoxicated—the Justice Department’s lawyers had seen a news report by me on the controversy surrounding the Coombe.

  Fresh doubts cast on MMR study data

  Nine hundred words, on page 11.

  I’d then supplied them with documents (my obvious public duty), and they enlisted the PCR geek, Stephen Bustin. “The dogged work of one journalist brought this to the fore,” the government’s lead attorney, Vincent Matanoski, a tall naval reserve officer, acknowledged my investigation to the bench.

  By this time, Bustin had dug through more Coombe data and had come to Washington to say what he found. He alleged altered lab notebooks, and 7700 runs where its operators had failed to convert RNA to DNA, yet still reported amplifying the virus. He also compared results from batches of biopsies fixed in formalin (the standard preservative for hospital pathology) with others frozen in nitrogen by Nick Chadwick.

  I felt extra fond of that last demonstration, as it wasn’t too hard to explain. The frozen samples were taken because formalin degraded nucleic acids, making molecular amplification more challenging. So with formalin you would expect to run the machine for more cycles than with pristine frozen tissue to get any positive signal. But Bustin discovered that, for O’Leary’s reported F gene, the average number of cycles was the same for both batches—unlike a “control gene,” also checked.

  That led him to submit that measles had infected the biopsies after the formalin fixing procedure by pathologists—therefore after they left the children.

  “Whatever this is, is a contaminant,” Bustin told Hastings. “This cannot be part of the original biopsy.”

  Seventeen witnesses, including Theresa, would give evidence. Hers proved to be the most impressive. As the court was aware, an essential element for claims of vaccine damage (dating back to the Stuart-Smith checklist, and beyond) was the claimed “temporal link” between shot and symptoms. And it would be over this—evidenced, as so often, by the mother’s account—that the songs of Sesame Street rang out.

  In a “narrative” Theresa wrote, years after the event, she said that her daughter had become ill with a fever fourteen days after receiving MMR. Later, she halved this to seven days after. And in an affidavit sworn before the trial began, she said that, from “seven or eight days” following the shot, her daughter would “cry inconsolably” unless a Sesame Street video was played.

  “To the best of my knowledge, as an approximate, I would say one to two days into the fever, so that would be December 27, or December 28, 1995,” she said under cross-examination.

  “And could you describe how she would react to a Sesame Street video?” Ricciardell
a asked.

  “It would calm her.”

  “Did she stop interacting with people during this time?”

  “It began declining. Yes.”

  The mother said that, about two months later, Michelle began hand-flapping. And in the months that followed she became withdrawn, didn’t respond to her name, pushed people away when they tried to hold her, and got “engrossed” in Sesame Street.

  “What do you mean by ‘engrossed’ in it?”

  “She would watch it and, I guess you could say, tune everything else around her out.”

  Her proof was of an order quite different to O’Leary’s. I could see it in the courtroom for myself. The Frenchman, Fombonne, plays clip after clip of the family’s home videos, in which the little girl’s behavior, in the high chair and everywhere, correlates with the mother’s impressions.

  Here’s Michelle, hands flapping to Sesame Street. Here she’s not responding to a game of peekaboo. Here she’s on a blue pony, with “no spontaneous action,” and with colored balls she “doesn’t explore.” Then, at a birthday party, in a beautiful white dress, with her mother vainly calling, “Michelle . . . Michelle.” We see unusual “finger mannerisms,” hear a “guttural” sound, and we watch as she watches wheels spinning.

  “This is a sample that I observed in multiple clips which are all consistent,” Fombonne confirms. “In other words, it’s not a highly selected series. All the videos show the same type of behavior.”

  The next day, another expert took the witness stand, and identified the same hallmarks of autism. Max Wiznitzer, a pediatric neurologist with a busy clinical practice and a teaching post at Case Western Reserve University, Cleveland, went through the videos again. “The parent is trying to engage her in making vocalizations, but we don’t hear any response,” he commentates. “There’s no real response, or acknowledgment of the adults present, in terms of a social smile, or anything else.”