The Panic Virus

by Seth Mnookin; Dan B. Miller

  In the years to come, independent investigations would reveal that there had been good reasons for Wakefield and his co-authors to have been less than transparent about their work: The for-profit lab at which they obtained their results had been set up in consultation with Wakefield four years earlier for the purpose of testing tissue samples for MMR-related lawsuits; it was unaccredited, refused to participate in quality-control programs, and didn’t always follow manufacturers’ guidelines for equipment; in subsequent tests, it produced false positives at a rate that indicated massive contamination; and the tissue samples used for the study were of such poor quality they were not suitable for PCR testing in the first place. In light of this catalogue of shortcomings, the revelation that the lab’s research notebooks were shown to have been altered after initial results were recorded raised questions as to whether widespread fraud was taking place as well.

  It was impossible for Sarah Barclay, the BBC’s on-air reporter, to have known any of this at the time. She was, however, aware of the criticism of Wakefield’s earlier research—but to include details about his reputation or the validity of his previous work would have begged the question as to why the BBC was airing “Every Parent’s Choice” in the first place. Instead, Barclay covered the story as if it were a political battle, with Wakefield’s “serious accusations” leading to the government’s “public concerted attack on work of the man they held responsible for the loss of public confidence” in its vaccine program. In Barclay’s hands, this was a “war of words”—and she gave all the best lines to Wakefield and the parents who supported him. “He had the MMR and he’s autistic,” one mother said, her claim left unchallenged. “Overnight he had the fever, the high temperature. Literally overnight. He was never the same again. He stopped talking and his behavior was bizarre.” Another mother, who was the last person quoted on the program, said all she wanted was to make sure parents were given all the “information” they needed. “I wasn’t,” she said. “I think other people should be given that right that my sons and myself were denied.”

  In contrast to her treatment of proponents of the MMR-vaccine theory, Barclay aggressively disputed statements by government officials who stressed the vaccine’s well-established safety record. At one point, she pressed Britain’s chief medical officer, Sir Liam Donaldson, on what guarantees he could offer concerned parents: “Just because there is no evidence now, it doesn’t necessarily mean that there won’t be evidence in the future. What happens if you’ve got it wrong?” An exasperated Donaldson tried to explain what Barclay should have been telling her viewers all along. “This isn’t a situation where we’re in the dark with no evidence whatsoever,” he said. “But you’re choosing to focus on one, or a small group, of people’s claims against a wide range of other researchers who’ve not been able to replicate their work, who are prepared to come out publicly and sign up to unequivocal endorsements of the effectiveness and the safety profile of MMR.”

  Donaldson’s protestations were for naught. Within days of being broadcast, “Every Parent’s Choice” started a prototypical media landslide, where coverage by one outlet legitimizes the story for another one, and on and on until everyone is writing about the ginned-up controversy of the day. In this situation, in the weeks after the Panorama special aired, there were literally hundreds of broadcasts and print articles that ran on the subject. Later that year, when researchers from Cardiff University in Wales studied the coverage for a report on how the media affects the public’s understanding of science, they found that 70 percent of stories related to MMR mentioned a link with autism, while only 11 percent reported on the vaccine’s safety record. “Since most health experts were fairly clearly lined up in support of the MMR vaccine,” the researchers wrote, “balance was often provided by pitching medical experts against parents, an approach facilitated by the work of parental pressure groups on this issue. This created a serious difficulty for scientists and health professionals, who are only able to propose dry generalizations against the more emotive and sympathetic figures of parents concerned for the welfare of their children.” The net effect of this manufactured equivalence was that more than half the people in England went to sleep each night believing it was as likely that MMR contributed to autism as not.

  Meanwhile, the results of more reputable studies kept coming in. That November, The New England Journal of Medicine published a report titled “A Population-Based Study of Measles, Mumps, and Rubella Vaccination and Autism.” The paper, which represented the first results from the Denmark-based studies that had been launched two years earlier, tracked each one of the more than 530,000 children born from the beginning of 1991 to the end of 1998, making it by far the largest MMR-autism study to date. The results were unambiguous: After analyzing the children for a sum total of “2,129,864 person-years,” the study provided still more “strong evidence against the hypothesis that MMR vaccination causes autism.” Perhaps now people could stop fighting over how to interpret the data that had previously been available, the parents of autistic children could stop second-guessing their decisions to vaccinate their children, and everyone could redouble their efforts to identify the disease’s causes and determine the most effective treatments.

  That, of course, is not what happened; instead, the paper strengthened the bonds between those autism activists that blamed the MMR vaccine and those that blamed thimerosal. As soon as the paper was released, SafeMinds grabbed the media’s attention by making provocative statements (“It’s a sad day in America when injured children are denied their due process”) and issuing accusatory press releases (“Vaccine Health Officials Manipulate Autism Records to Quell Rising Fears Over Mercury in Vaccines”). On November 6, the day before the NEJM article’s official publication date, SafeMinds released an “assessment” belittling the analytical ability of the five MDs and three advanced degree recipients who’d conducted the study. The paper’s results, the group wrote, “appear to support a thimerosal role in the increases in autism being reported in the study in Denmark”—an odd claim to make, considering that the MMR vaccine had never contained thimerosal and that neither “thimerosal” nor “mercury” even appeared in the paper’s text. Much of the rest of the group’s five-page analysis continued in this vein: “A vaccine-induced autism subset may be present at a much lower prevalence in Denmark. . . . This may indicate a co-factor effect (e.g., thimerosal) that operates to a greater degree elsewhere. . . . It is possible that MMR increases the rate of autism only when acting in conjunction with another environmental factor, such as mercury.”

  One reason for SafeMinds’ confrontational approach to whomever it perceived as being opposed to its goals may have been an unspoken awareness that whenever the focus did not remain on its grievances, there was a chance the media would pay more attention to the fact that the group’s argument was based on a single paper written by a group of understandably upset parents and published in a deliberately fringe journal. That did not mean there were not legitimate concerns about the preservative—everyone from Neal Halsey to the CDC’s Tom Verstraeten had been unsettled by the haphazard way in which more and more thimerosal-containing vaccines had been added to the recommended schedule—but those concerns centered on data linking mercury with a range of distinct, well-defined neurodevelopmental problems like cerebral palsy. Equating those conditions with autism was a little like equating a broken finger with a broken toe: In both cases, a bone has been fractured, but only one outcome is likely to have had anything to do with slamming a fist into a wall.

  The result of this pitched environment was that any effort to bring clarity to the debate inevitably ended up fueling the controversy. The same week that the NEJM piece ran, The New York Times Magazine featured a three-thousand-word cover story by Arthur Allen titled “The Not-So-Crackpot Autism Theory.” If ever there were an opportunity for a thoughtful airing of the issues, this was it: The New York Times Magazine has first-rate editors and rigorous fact checkers and Allen is a talented reporte
r and writer with the ability to make complex issues accessible to lay audiences.

  In many ways, the piece, which was packaged as a profile of Halsey, succeeded; however, the story’s strengths were ultimately overshadowed by the uproar caused by three pieces of display type: The story’s title, its subhead (“Reports of autism seem to be on the rise. Anxious parents have targeted vaccines as the culprit. One skeptical researcher thinks it’s an issue worth investigating”), and one of its captions (“Neal Halsey says that vaccinologists have no choice but to take the thimerosal threat seriously”).

  Even before the story hit newsstands, Halsey was inundated by colleagues accusing him of being an apostate. The fact that he’d been so single-mindedly determined to move decisively three years earlier was one thing; now it looked as if the high-profile director of the Institute for Vaccine Safety was making claims that were contrary to the work of dozens of reputable scientists around the world. In an effort to clarify his views, Halsey sent a lengthy letter to the Times chastising the paper for its role in “misleading the public”:

  The unfortunate use of a sensationalized title in the article published November 10, 2002 in The New York Times Magazine . . . absolutely misrepresents my opinion on this issue. Also, the caption under the photograph of me . . . is not a statement that I ever made. There is no “threat” as thimerosal has been removed from vaccines used in children. The headline, the press release issued prior to publication, and the caption are inappropriate. I do not (and never did) believe that any vaccine causes autism. . . .

  The sensationalized title sets an inappropriate context for everything in the article. Readers are led to incorrectly believe that statements in the article refer to autism. I have expressed concern about subtle learning disabilities from exposure to mercury from environmental sources and possibly from thimerosal when it was used in multiple vaccines. However, this should not have been interpreted as support for theories that vaccines cause autism, a far more severe and complex disorder. The studies of children exposed to methylmercury from maternal fish and whale consumption and the preliminary studies of children exposed to different amounts of thimerosal have not revealed any increased risk of autism.

  Halsey went on to decry newspapers’ “use of deceptive titles” as a means for “mislead[ing] the public.” “Apparently,” he wrote, “editors, not authors, write most titles. To avoid misrepresentations authors should propose titles and assume responsibility for making certain that titles do not misrepresent the opinions of individuals or information presented in the article.” The Times didn’t run Halsey’s letter, which he posted in full on the institute’s Web site. (Needless to say, neither did it change journalism’s time-honored practice of having anonymous editors write eye-catching headlines.) In the coming days, Halsey’s worst fears came true, as anti-vaccine advocates took to describing his stance in a way that helped them make their case.41

  The aggressive posture adopted by advocates could not, however, stop the evidence from mounting against them. In July 2003, Archives of Pediatrics and Adolescent Medicine published a review of a dozen separate epidemiological reports on MMR, which collectively studied millions of children from five different countries born over a half-century. Once again, the conclusion was that there was “[n]o evidence of the emergence of an epidemic of [autism spectrum disorders] related to the MMR vaccine” and “no evidence of an association between a variant form of autism and the MMR vaccine.” Then, over the course of the next four months, results from four large-scale studies of thimerosal and autism were released. In August 2003, a comparison of children in California (where the amount of thimerosal in vaccines had increased in the 1990s) with those in Denmark and Sweden (where thimerosal had been completely removed from vaccines) found that diagnoses of autism had risen by comparable rates in all three places. In September and October, two other studies of Danish children found autism rates had either increased or stayed the same after the removal of thimerosal from the country’s vaccines in 1992. And in November, a detailed analysis by Tom Verstraeten of records from the Vaccine Safety Datalink found no connection between higher doses of thimerosal and increased rates of autism or attention deficit disorder. Each individual study might have been, in the words of Vanderbilt Department of Preventive Medicine chair William Schaffner, “imperfect,” but together they formed “a whole mosaic of studies . . . that all add up to this theme: thimerosal is not the culprit.”

  By the end of 2003, even the mass media outlets that the activists relied on to disseminate their message were being subjected to the slash-and-burn tactics used in the efforts to discredit public health agencies and independent researchers. One of the more flagrant examples stemmed from a December 29 Wall Street Journal editorial titled “The Politics of Autism.” The piece was relatively tame by the editorial page’s standards, but there was no question as to where the paper stood:

  This is a story of politics and lawyers trumping science and medicine. It concerns thimerosal, a preservative that was used in vaccines for 60 years and has never been credibly linked to any health problems. Nonetheless, a small but vocal group of parents have taken to claiming that thimerosal causes autism, a brain disorder that impairs normal social interaction. The result has been an ugly legal and political spat that has spilled into Congress and is frightening some parents from vaccinating their children against such deadly diseases as tetanus and whooping cough. . . .

  Autism is a terrible disease and it’s understandable that some parents would want to look for scapegoats. One lobby group, Safe Minds, has been especially active in blaming vaccines and has found a powerful ally in Indiana Republican Dan Burton, who runs the House Wellness and Human Rights Subcommittee. His family has had its own painful experience with autism.

  But their understandable passion shouldn’t be allowed to trump undeniable evidence and damage childhood immunizations that are essential to public health. Vaccine makers stopped using thimerosal a few years ago, but the autism lawsuits threaten those companies with enough damage that their ability to supply vaccines is in jeopardy.

  No sooner had the paper rolled off the press than the onslaught began. The Journal’s editorial board, which had once been accused of contributing to the suicide of Clinton White House staffer Vince Foster, was no stranger to bare-knuckled brawls; still, its members were staggered by the viciousness of the attacks. The writer who’d drafted the unsigned piece was threatened so convincingly that for a period of time he didn’t come to the office for fear of his safety. The paper’s secretaries were harassed with accusations of aiding baby killers. Before long, the Journal felt compelled to respond: On February 9, 2004, the board laced into their “antagonists” for using “a hornet’s nest of moral intimidation” in an effort to “shut down public debate on the matter.”

  In letters and e-mails we’ve since been accused of “fraud,” a “terrorist act,” and of having an “industry profit promoting agenda.” We’ve been told we belong to a vast conspiracy—including researchers, pediatricians, corporations, health officials and politicians—devoted to poisoning their children. . . .

  As writers for an independent newspaper, we aren’t about to shut up. But what worries us is that these activists are using the same tactics in an attempt to silence others with crucial roles in public health and scientific research. The campaign to silence or discredit them has already had damaging consequences. . . .

  None of this, we should stress, is in the interest of families struck with autism. Researchers have spent years studying the vaccine-autism link, and we hope they continue. But if the research disproves a connection—as it has up to now—the autism community needs to listen and move on. Research dollars are limited, and parents of autistic children deserve to see the money spent where it will do the most good.

  Autism is a terrible diagnosis, and we hope science soon gives parents the chance at a cure. But the best way to achieve that goal is through open and honest inquiry that shouldn’t be stopped because of the c
lamoring of an intolerant few.

  The unyielding approach of SafeMinds and its allies might have been effective from a bottom-line, PR perspective, but as the Journal’s piece suggested, it also raised a number of disturbing questions: By pushing their own agendas regardless of their veracity, were they leaching resources away from more legitimate lines of inquiry? By putting scientists, health officials, and medical professionals on notice that any questions they raised would be used against them, were they helping or hurting the cause of vaccine safety? Finally, what responsibility did they bear for declining vaccination rates—and for the reemergence of diseases once thought to have been all but eradicated?