Investigating Andy: the MMR scandal
The title of my talk for the HealthWatch 2011 annual general meeting was, “Regrets? I have a few—Inside the MMR investigation”. Being honoured with an award seemed like a moment to go off-script, and after more than a year of banging back and forth to give lectures in the United States, and dashing around Britain to “Skeptics in the Pub” meetings, I’d gotten a little jaded with my standard “Fixing the Link” PowerPoints. So I took a chance and said something more personal.
My first regret was a failure, years ago, which had nothing to do with vaccines. In 1990, which Nick Ross reminded everyone at the meeting was the year that HealthWatch was launched, I was ensconced on Potrero Hill as The Sunday Times man in San Francisco (don’t ask how I pulled off that stunt). And on a sunny day, across the Bay at UC Berkeley, I interviewed Dr Peter Duesberg. This was (and still is) the man who said (and still says) that HIV is not the cause of Aids.
At the start of the 1990s, there were big gaps in science’s grasp of how the retrovirus could do its mischief. Duesberg, at the time a distinguished retrovirologist, was onto them like flies on sheep. His analysis was fascinating, and I took a pile of notes, while we chatted at a campus picnic table. But when I solicited his views on the “real” cause of the pandemic, he seemed unconvincing, even irrational. So, to my lifelong regret, I never wrote the piece. This is among my more painful hindsights. Agree with him or not—and that wasn’t really my business—what he said, back then, was worth a thousand words in The Sunday Times. “Boffin thinks you can’t catch Aids.”
But, as I say, I didn’t write it. Couldn’t be bothered, to be honest. Which left a modest gap to be filled by someone else. Newspapers, like nature, abhor a vacuum. And in the office from which I’d departed to write dispatches from America’s roadsides, was a medical correspondent under pressure. He’d been advised by our managers to leaven the usual diet of “new treatment offers hope” reports to “get stories like Deer’s” that cause a fuss.
Within months of my failure, he waded in to the HIV issue with a notorious crusade. It was full-blooded denialism, but was allocated pages and pages by the then editor, Andrew Neil. And, bestowing on Duesberg the public credibility of a world class newspaper, it may well have fed into what was to occur in South Africa after 1999: president Thabo Mbeki’s denialist health strategy, which brought death and suffering on a horrifying scale.
If only I’d written a few well-picked words, conceivably things might have turned out differently. My colleague’s first pitch wouldn’t have survived the editor’s Tuesday conference. “Deer’s done that already,” Neil would have snapped.
Why is this relevant? Well, because journalists at the sharp end are bound to consider what plays out from their work. At the top, national editors are often supremely ideological, constantly thinking about the upshot of their coverage. But the most successful set this aside for the imperative to sell: to tell stories that people actually want to read. It’s an anarchic part of our culture, but is near the root of democracy. You tell stories, like climbing mountains, because they’re there.
My mistake with Duesberg was to evaluate his theories, as if I was the arbiter of his views. And when Andrew Wakefield came along as a topic of inquiry1 I made sure not to make the same error. I was determined primarily to be a servant of the story, which, for all my hard work, told itself. “Excuse me, ma’am, did you see what happened?” Like a train crash, or a robbery. Get the facts.
Although I didn’t have time for all this in my talk, if I’d had the choice, I’d sooner have revealed proof that MMR indeed causes autism. I’d have got more space, won more journalism awards, have been accorded more spots on TV, and earnt more money, than I did revealing the Wakefield scandal. Overshadowing these, moreover, and worth more than them all together, I’d have accomplished something remarkable for children. If vaccines caused autism, that’s important information to head off another kind of pandemic.
The truth I found was a lesser story, although I think one of consequence. People have told me it’s a justification for a life. But here’s another regret: the (perhaps understandable) spin which my editors sometimes sought to introduce. They were always going on about measles outbreaks and whether MMR causes autism or not. I don’t belittle those questions—which I’ve researched a great deal— but they were never what drove my inquiries. I simply wanted to set out what it was that happened: in short, what Wakefield did.
Recently, I was invited to lunch by the legendary reporter Bruce Page, who led The Sunday Times campaign over Thalidomide. He made me wince with envy at how he said he completed the investigative part by pulling research on the drug from the library. And he reminded me of an old adage, passed to him by someone else, that there are really only two stories in our tradition. The first, he said, was, “We name the guilty men.” The other: “Arrow indicates defective part.”
Mine was the first kind (the second would have been the science): nailing an all-singing-and-dancing charlatan. For my HealthWatch talk, I showed a few of my slides about how my investigation moved forward over the years. I put up tables which compared what the BMJ has calledWakefield’s “elaborate fraud” with the Piltdown Man hoax of 1912. And I presented a series of slides concerning others in the saga, which cause me worry about the integrity of medical science.
These included the graduate student who knew something was amiss, but had nowhere to go with his concerns; co-authors taking credit from a high-impact publication; and a reviewer who was disposed to believe the MMR data because of an old-boy connection.
Back to measles: of course I don’t minimise this disease, which is sometimes fatal and, more often, brain-damaging. Nor do I underestimate the importance of the science that lies behind vaccine safety. But alongside these issues, theWakefield scandal says much about the potential for wrongdoing in research. It reveals the ease with which misconduct can be effected in academia, and the difficulty, or reluctance, to tackle it. Bill Clinton once called the 21st century the “century of biology”. And after what I’ve seen can happen, just looking at MMR, I fear another Thalidomide-style catastrophe.
HealthWatch, to its credit, often touches on such issues, but I must admit to a small regret about some emphases. As with the amazing Skeptics in the Pub2 phenomenon, which has sprung up in the last few years, there seems to me to be a sporadic obsession with, say, rubbishing homeopaths, or brandishing the Daily Mail’s contradictions. By all means promote critical thinking, and call out absurdity, but, from my point of view, I’m not sure that it’s here that health requires watching most intently.
As I said in my talk, I think that—for young people especially— trying “complementary” medicines can be a rite of passage. They may be a way in which some explore their route to rationality, rather than a gullibility from which we must rescue them. To borrow a related thought from the former politician Denis Healey: “If you’re not a communist before you’re 30, then you’ve got no heart. But if you’re still a communist after you’re 30, you’ve no brain.”
People often ask about the abuse I get, having had the temerity to take on Wakefield. Here’s an example I quoted from my hate mail inbox, which produced laughter enough to delight any speaker. It was written by a lady. She wrote in bold capitals which, to avoid shouting, I’ve dropped to lower case:
“F... you. You are the scum of the earth. You are just trashing people that are totally dedicated to find cures for a horrible disease. Protecting your selfcentered ass, trashing others for selfgain, or protecting your buddies at a corrupted pharmaceutical industry. Well, now I’m trashing you right back. You are trash. We’re even.”
Upset, me? Nope. Understandable? Entirely. Wakefield has been encouraging people to be afraid of vaccines for 14 years. He was doing it at autism conferences long before I got involved. At one of these, I should point out, he gave his infamous “callous disregard” speech,3 about buying blood from children at a birthday party. In another speech, you won’t have heard, he betrayed an apparently sincere whistleblower,4 who voiced his vaccine safety concerns. If you watch the second video and listen to the audience, you’ll understand how Wakefield works the crowd.
And this brings me to the final regret which I raised at the meeting. It concerns people like the lady who wrote that email. That woman was suffering. She was clearly in pain—and a pain not inflicted by me. For years, some parents of children with developmental disorders have been led to believe that it was their own fault for not listening to Wakefield that a son or daughter is autistic or disabled. That can deepen a sense of guilt, from which springs a vulnerability which in some cases festers into hatred.
But my regret isn’t vicarious. It’s not mere bystander sympathy. It’s that I sometimes find my compassion feels strained. There was a day, for example, during Wakefield’s GMC hearing when a strange collection of people gathered outside. One was an overwrought woman bearing a placard with a picture of her young son who had undergone radical bowel surgery. But he wasn’t even involved in the Wakefield case and had been diagnosed at another hospital with a food intolerance.
Wakefield’s disciples, however, pretended that this boy was part of the case. It was a disgusting deception, for which those who knew should be ashamed. But I wondered, most uncharitably, about that mother. Why did she allow herself to be used in this way? And what about those who used her?
I don’t fear the abuse of those victimised by Wakefield. But I sometimes feel my reactions are misplaced. It’s easy to dismiss these suffering people as cranks or idiots. It used to happen in the controversy around Duesberg. But it’s a greater accomplishment to stay focussed in compassion, and on the needs which should be brought to the fore. There’s no right response to hatred in hatred. I need to try harder next time.
Brian Deer, Journalist
In addition to receiving the 2011 HealthWatch award, Brian Deer was named specialist journalist of the year in the 2011 British Press Awards. Brian Deer can be contacted through his website, http://briandeer.com/
Further reading from Brian Deer’s website on topics mentioned