by Brian Deer
This was the first case in which research had been funded by legal aid. In retrospect, it was not effective or appropriate for the LSC to fund research. The courts are not the place to prove new medical truths.
Ms. Two, Ms. Four, and hundreds of other parents were shattered when the news came through. Troublemakers blamed an establishment conspiracy—so blighted had spirits become. Some vowed to fight on and refused to sign papers withdrawing their claims for damages. But the game was up. The music had stopped. And almost none of them ever knew why.
Undoubtedly many had been “giving it a go”—joining a lawsuit they’d heard of through the media—just in case it might pay out. That was the history of the board’s class actions over pharmaceuticals, as it had noted nearly twenty years before. Lawyers had dangled the prospects of up to £3 million in compensation per autistic child. Who wouldn’t put their name down for that?
But even those who never blamed MMR before Wakefield were nevertheless mostly families supporting members with real issues and uncertain futures to consider. Some of Barr’s young clients might have thrived on mere tolerance. But, at the unfunny end of the autistic spectrum were challenges for parents 24/7. And what would happen when those parents were gone? Many had waited for five, or more, years dreaming of help that now wouldn’t come.
They’d been spared the hell of litigation stress: night terrors for those who might face legal bills. But they suffered a peculiar agony. The things that we dwell on become the shape of our minds, and many who’d been goaded to seek comfort blaming others had grown bitter and suspicious in their waiting. I’d find them, bewildered, fingering torn manila envelopes stuffed with press clippings, newsletters, and fact sheets.
The rest was just money. Lots of money. “We were always being told, throughout this, that there are these ‘indications’ from this, that, and the other piece of evidence,” a lanky, donnish type named Colin Stutt, the legal board’s head of funding policy, tells me. “ ‘We need to do just a bit more, and then we’ll be okay. And we’ll be home on proving that causative link—if you’ll just give us a bit more money.’ ”
That money mostly went into the pockets of a small group of lawyers, doctors, “experts,” and their staff. On Barr’s side, the final bill was £26.2 million (about £41 million or US $51 million at the time I write this). And Wakefield’s allocation was £435,643 (about £677,000 or US $846,000 now), plus £3,910 in expenses. That was roughly eight times his annual medical school salary. He claimed, but was refused, much more.
Barr and Limb did well. They retreated to Norfolk and a barn-style thatched house, built in 1593, with seventeen acres of land. And after “spectacular results” with Limb’s daughter, Bryony, Barr became a board member of the Society of Homeopaths, while his wife set up shop as a “CEASE” homeopath: a program targeting autism, devised by a Dutchman, offering practitioners certification in treating developmental issues after three to five days’ training.
“I have some idea of what the anonymous sculptor of the Venus De Milo must have felt,” Barr chuckled in a column for a lawyers’ magazine, likening the lawsuit, on which he spent a decade, to an exercise in chiseling and polishing. “He had chipped away for years, slowly transforming a piece of the best available marble into a work of unimaginable beauty.”
Lawyers tell me that the drug companies, between them, spent roughly the same as Barr’s side on the action: offset against tax, investor value (mostly pension funds), and perhaps a little medical research. So, the gross cost of his Venus totaled about £52 million—convertible to approximately eighty million at the time I write, or one hundred million US dollars.
A fortune down the toilet? Campaigners thought not. Parents throughout the world had heard the message. In the United States, a deluge of new claims were pending, with lawyers now recruiting thousands of families as Lenny Schafer’s newsletters and Dan Burton’s committee hearings imported the alarm from Britain.
Again, the culprit: measles in MMR. Again: the Dublin lab. Again, a feeling tone of mistrust and resentment, as hearts, already broken, were poisoned.
And still, behind it all lurked that twelve-child paper, with its fourteen days from shot to symptoms, lymphoid hyperplasia, and nonspecific colitis—of which much remained to be revealed.
EXPOSED
EIGHTEEN
Assignment
As with many a media project in the golden age of ink on paper, what became my investigation of that twelve-child study started with a three-course lunch.
My host was Paul Nuki, a pugnacious former reporter, who’d just been promoted editor of the Sunday Times “Focus” section, and was looking for big, space-filling stories. He was a lean-forward kind of guy: a surfer and rock climber, lean and wiry, with the demeanor of a pool player. He was the son of a doctor (a rheumatologist) and the father of one girl and three boys.
We dined on the terrace of a white-tablecloth restaurant, next to London’s iconic Tower Bridge. To my right, Nuki’s left, chugged Thames river barges and sightseeing cruisers, trailing sun-sparkling waves and squealing gulls. This was Tuesday, September 16, 2003: a classic, cloudless, English summer day.
Nuki, thirty-nine, first proposed an inquiry into Heinz tomato ketchup. He was convinced that its color and texture were too uniform to be consistent with a natural product. I wasn’t so sure. I thought his premise was sketchy. In any event, he didn’t really need me. I had a big-time award citation as probably the only British journalist who “polices the drugs companies,” and to the best of my knowledge, H. J. Heinz didn’t make medicinal claims for its sauce.
My favorite pharma investigations began in 1986: first exposing a biochemist who faked safety studies of a new generation of contraceptive pill. He was contracted to the Schering AG company of Berlin, and I tracked him from Deakin University, in Geelong, Australia, via a conference hotel in Chicago, Illinois, to a rented villa in Marbella, Spain, where he opened the front door, and practically fainted.
I remember his wife, a family doctor, goading me. “But what can you prove,” she sneered. “What can you prove?”
Her husband drank himself to death after we published.
A good story. Page 1. And I fared even better with a man who was already dead. That was Henry Wellcome, the Wisconsin-born salesman, whose last will and testament, signed in February 1932, bequeathed a part drug company, part grant-giving charity with all manner of money-go-rounds. One skeleton in its closet, which I dragged into view, was a blockbuster combination antibiotic behind a tsunami of deaths and injuries. His empire was broken up after we ran five pages, spawning a richer, revamped Wellcome Trust: a giant biomedical research benefactor of vast international repute.
Wellcome’s product was called Septrin, or Septra—identical to another, Bactrim, from the Swiss pharmaceutical behemoth Hoffmann-La Roche—which bolted two drugs together, one from each company, in rough proportion to their manufacturer’s capital. But when I called a researcher involved in the recipe, he slammed down the phone. So I knew. After we published, I got hundreds of letters and emails, saw the government curtail the product’s use in Britain, and acquired the memory of a mother describing the sound of life-support equipment when her eighteen-year-old daughter died.
Nuki liked that kind of stuff. It was a Sunday Times specialty: fusing public and human interest. Years before, the newspaper had branded itself with a campaign by the then editor, the legendary Harold Evans, over a notorious morning sickness drug, thalidomide. It was responsible for thousands of appalling birth defects, and he ran page after page for justice.
I guess I followed that tradition: from an eight-page magazine piece on the dark side of Viagra, to five on “an epidemic of medical fraud,” which kicked off with a kidney specialist forging patients’ signatures. But that kind of journalism was so, so expensive—with reporting not in hours, but over months, sometimes years—while my lunch friend wanted words within weeks.
I said, “Okay, Paul.” But I wasn’t busting for the gig. To be honest, I felt vaxxed out. First I’d done the investigation of DTP, inspired by the victory of the Irish mother. That took me almost a year. Then later came AidsVax, the no-hope AIDS vaccine, which produced an eight-pager in the Sunday Times Magazine, and dragged on long after that. I discovered that a staffer at the US Centers for Disease Control and Prevention who cheer-led for VaxGen and negotiated grants, had a secret deal to join its payroll.
I felt I’d done enough. And such work was life-crushing, to get on top of all the -ologies involved. Vaccines were a hugely multidisciplinary topic, and to go beyond the trivial platforming of experts—he says this; she says that—you’d be quicker becoming fluent in Russian. The temptation with medicine is like reading Shakespeare: you hope the tricky words will make sense from their context. But when I investigated DTP, I made a pact with myself: I wouldn’t skip one “delation” or “Pale Hecate’s off’rings.” I was determined to know what they meant.
Medicine wasn’t even my specialist beat. My first commitment was to social issues. My instincts were toward things like poverty, homelessness, prisons, disability: inequality in access to power. But when I reported on that stuff, my stories would appear between pages 3 and 9, whereas almost anything about doctors made the front. So after lunching with Nuki, instead of gleefully pouncing on the MMR controversy, I sent a few emails but otherwise did nothing, except spend the next few weeks writing a novel.
I wouldn’t finish that novel for thirteen years. It seemed life had other ideas. Because, on a Sunday afternoon in late November, I was walking through London from Buckingham Palace to Trafalgar Square, when I came upon a little arts center that, for one day only, was previewing a TV show. It was described as a “docudrama,” called Hear the Silence, in which Wakefield and a mother—both played by actors—battle a mustache-twirling medical establishment.
The on-screen mother was a fictional character. But it was based, I’d learn, on Ms. Two. And when the screening finished, she rose and gave a speech: a smartly presented woman, even more smartly mannered, with her Lancashire accent calling people to order in a confident, controlling style.
According to the drama, she was the first to contact Wakefield, dramatically rushing into the hospital. So, I phoned her the next day, and four days after that I traveled to her home: a small, yellow brick house on the edge of an unmemorable Cambridgeshire town (which I won’t identify, so as to enhance her son’s privacy) eighty-five miles north of London.
Ms. Two lived with her husband and two neurotypical children, twenty-two and twelve years old. Child Two, then fifteen, was away at a special school, but there were signs of his needs in a securely fenced yard, with a trampoline and unbreakable toys.
On the phone, I’d told her that my name was “Brian Lawrence,” from the Sunday Times, to keep our chat free of inhibitions. I’d got clearance from Nuki and a Times lawyer to do this. It’s common in investigative work. By now Google searches were up and away, and the last thing I wanted was for her to read my DTP story and get defensive when answering questions. “ ‘Brian Lawrence’ was actually Brian Deer,” reported the Washington Post’s London bureau chief, Glenn Frankel, later, “a prize-winning investigative journalist.”
By now, I’d read the twelve-child paper, and particularly noted its time link. The parents of eight kids were reported to blame MMR, with the first behavioral symptoms said to have followed the shot by no more than fourteen days. That was, I knew, the same time frame picked by John Wilson in the 1970s for his selection of suspected DTP victims.
It was also the time frame in a government report in my files, dated May 1981. In a bid to sort cases of brain illness after the whooping cough element of DTP, a chapter on “causality” segregated times of onset based on the Great Ormond Street neurologist’s paper. When “spasms and behavioural disturbances” occurred “more than 14 days” after the shot, a link was considered to be “more unlikely than likely.” But when the problems were reported within two weeks, it was deemed “more likely than unlikely” to be the cause.
Seated in Ms. Two’s living room with my microcassette recorder, I ask, like I had with Ireland’s Margaret Best, about the day of her son’s vaccination. And although Child Two received it in November 1989—before any controversy in Britain over MMR—his mother says she was so concerned about its possible side effects that she’d raised this with both the doctor and a nurse.
“I remember going out and actually spoke to the doctor,” she says. “Because I was saying about this vaccine, saying I’m concerned about this vaccine.”
Smart lady. She explains her prescience by remembering her father: a family doctor in Preston. One of her “jobs,” she tells me, as I sip warm tea, was to “tidy up the drugs room,” and one day, she says, she found unused cartons of thalidomide.
“I remember saying ‘These boxes here haven’t moved,’ ” she tells me. “ ‘There’s no stock control here. Why aren’t you using these boxes, Dad?’ ”
She says he replied with words that lay behind her later caution over MMR. “And he sat me down, and said, ‘That’s actually something called thalidomide.’ And he said, ‘And I will not use it.’ And I said, ‘Why not?’ And he said, ‘Well, because it hasn’t been tested properly.’ ”
With my tape gently turning, I ask what followed, on the day her son got his shot. “I suppose, you leave the surgery, you go shopping, or something?” I suggest. “What happened then?”
“No, I was at work, actually,” she replies. “I was at work. So I didn’t go shopping. I came back, and the nanny looked after him. Uhhm . . .”
On the transcript of this, I would note, “Pauses, sounds confused.” Then she takes off on a riff about her position with a travel agent, which she’d earlier mentioned, in passing. “Sorry, I just, we just talked about the job that I was doing. I’m a bit tired this morning,” she explains.
Tired or not, she talks and talks, continuing without interruption.
I was still working in the IT department, because, and I moved over, I actually moved over, so when he at that age, I’m just—it’s not particularly crucial is it—but I was still in the IT department. I was doing this management facility, my own department job when I left, when I left, because actually I was, what happened . . .
And on she goes, some 370 muddled words: all about a travel company in London. It’s pretty confusing, and I struggle to restore order, zeroing in on the first behavioral symptoms experienced by her son, who she’d confirmed was among Wakefield’s dozen.
She says, “What happened was he started not sleeping at night. He’d scream all night, and he started head-banging, which he’d never done before.”
“When did that begin, do you think?”
“That began after a couple of months, a few months afterward, but it was still, it was concerning me enough, I remember going back . . .”
“Sorry,” I interrupt. “I don’t want to be, like, massively pernickety, but was it a few months, or a couple of months?”
“It was more like a few months because he’d had this, kind of, you know, slide down. He wasn’t right. He wasn’t right, before he started.”
“So, not quicker than two months. But not longer than how many months? What are we talking about here?”
“From memory, about six months, I think.”
From time to time, she got up and made phone calls. One was to Richard Barr, and another to Jackie Fletcher of JABS. And when I got back to London, I spent a day or two trying to make sense of my recordin
gs.
Ms. Two’s father had died when she was aged eleven. So her memory of tidying up thalidomide in the drugs room seemed to me somewhat improbable. This might, I thought, be an error of recall, so many years after the events. Or, she might be grandstanding for a Sunday Times reporter. Or, her late father, James Lunn (secretary of the Preston medicoethics committee) should have been arraigned by the General Medical Council for allowing a child access to drugs.
She’d had remarkable foresight to question MMR’s safety and was considerate of her nanny’s schedule. But although she claimed she didn’t know which child in the Lancet paper was hers, I noted the disparity between her “about six months” and Wakefield’s fourteen days.
Of course, I didn’t know then that, seven years before, she’d twice been logged as telling doctors at Hampstead that her son started head-banging two weeks following the shot. So days after the interview, I meet with John Walker-Smith and share with him my confusion.
“There is no case in the paper that is consistent with the case history [she] has given me,” I tell him. “There just isn’t one.”
The Australian professor doesn’t seem surprised. “Well, that could be true,” he replies, matter-of-factly. Not only was he the last author of the twelve-child report, but he’d seen this boy many times. He says he didn’t think that parents should talk about such things. It was a “confidential matter,” he stresses.
“Well, so either what she is telling me is not accurate,” I persist, “or the paper’s not accurate.”