In a Different Key: The Story of Autism (69 page)

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I
N THE
U
NITED
S
TATES
, the Mercury Moms also saw the story turn against them, beginning in 2004. That year,
a new panel was convened by the Institute of Medicine to review the most recent research testing the allegation that thimerosal was causing autism. Three years earlier, a similar IOM panel had handed the moms a small win, when it conceded that the thimerosal link was “biologically plausible.” But in 2004, there was much more data to examine. New epidemiological studies had been conducted in the United States, Britain, Sweden, and Denmark. Going back through several years of records, it was disappointing news for the vaccine camp: the IOM found no proof that autism was connected to thimerosal. Indeed, in Denmark, thimerosal had been removed from vaccines in 1992, yet autism was more prevalent than ever.

The IOM panelists listened respectfully to presentations by researchers allied with the Mercury Moms, but found these unimpressive. In one study, researchers had injected thimerosal into a strain of mice bred to be sensitive to mercury, who then showed signs of antisocial behaviors. However, even the researcher, a scientist at Columbia University who was partly funded by SafeMinds, acknowledged, “Of course, we need to determine the relevance of animal studies for human neural development.” The panel politely judged the mouse work “difficult to assess.”

In their 2004 report, the members of the IOM panel asserted, without ambiguity: “There is currently no evidence to support this hypothesis. The committee concludes that the evidence favors rejection of a causal relationship between thimerosal-containing vaccines and autism.”

The IOM released its report on the morning of May 18, 2004. By the end of the day, activist groups, who had trusted the IOM’s judgment when it matched their agenda, had already started a campaign to besmirch it.
SafeMinds published a press release slamming the committee’s thirteen expert members for having “compromised their integrity and independence” while acting under the “cartel’s influence,” and producing a report that was “a failure by any acceptable scientific
standard.” A year later, someone at SafeMinds would reveal that the release had been
composed in advance of the IOM’s release of the report—in case of an undesirable outcome. This admission only added to the impression that the activist parents would dismiss any and all data and conclusions that did not support their political agenda. It became increasingly difficult for them to claim that science—not evangelism—was at the heart of their argument about mercury.

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I
N
L
ONDON
, B
RIAN
D
EER
was not done with the Wakefield story. After his initial story ran in the
Sunday Times
, he had spent much of the rest of 2004 working on
an hour-long television documentary based on his initial reporting, and whatever he could add to it by further investigation. This took him to the United States, where Wakefield was now employed by the Austin Surgical Hospital in Texas, treating children with autism at a facility called Thoughtful House.

When the documentary aired on November 18, Deer had a good deal more to report on Wakefield, none of it exculpatory. His major new discovery was that Wakefield, before his
Lancet
article was published in 1998, had already applied for a patent on a new type of measles vaccine that might appeal to parents seeking to avoid the MMR. The conflict of interest was stupefying: Wakefield would have had a direct financial stake in the public’s being terrified of the MMR vaccine.

Deer also reported, for the first time, that massive problems with Wakefield’s methodology had surfaced. Deer had tracked down a former student doctor, who’d since become a researcher, who had helped perform the studies on Wakefield’s original twelve subjects. Assigned the job of looking for traces of measles virus, the young man ran tests to Wakefield’s specifications but came up with no measles virus each and every time. Having duly reported this to Wakefield, he was later stunned to read in the published paper that Wakefield was reporting that the measles virus was present in all twelve children. According to the researcher, the evidence had been nonexistent from the beginning, and he said this in Deer’s documentary.

The climax of the film saw Deer tracking down Wakefield at a conference center in Indianapolis, where he had just finished a speech
to the Autism Society of America. When Deer introduced himself, Wakefield recognized the name instantly and, startled, reached over to cover the camera lens with his hand.

More than a year later,
in an interview in Texas with a sympathetic reporter from the British newspaper
Express
, Wakefield told his public where he stood on the assault on his reputation. He casually batted away Deer’s mounting findings as a lot of irrelevant and malicious interpretation of things that go on in the normal course of laboratory investigations.

“I’m not going away before this work is done,” he said. “It’s simply a job that needs to be done, to find the truth.”

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S
CIENTIFIC TRUTH DERIVES
from laboratories, not courtrooms. But at least the courtroom is a place where stories can be tested. And in 2004, a formal process was launched to give the vaccine theory of autism its day in court.

Lawyers had been lining up clients for some three years already, ever since the IOM’s initial finding that the thimerosal theory was at least “biologically plausible.” Most wanted to take on Eli Lilly, thimerosal’s inventor, a target with deep pockets. Some
firms advertised on TV for clients, while a notice circulating in online autism communities asked for families interested in
“forcing the multi-billion dollar international pharmaceutical industry to pay.” It urged parents to contact the Mercury Vaccine Alliance, a consortium of thirty-five law firms planning a state-by-state legal assault on Eli Lilly and several licensed producers of thimerosal.

The response was huge. Families who believed in the vaccine theory wanted to see justice done, and without question, they needed the money—the financial burden of their children’s therapy and care was huge. By March 2002, families in at least twenty-five states had signed up, and the Mercury Vaccine Alliance had filed lawsuits in at least eleven states. Two more coalitions of lawyers had formed in the meantime. According to
The National Law Journal
, a group that included Dallas attorney Andrew Waters had already filed forty-five cases, with
more to come. “We’re considering about eight to nine hundred,” Waters told the
Journal
’s Mary Cronin Fisk.

Lawyers told Fisk they saw the vaccine story “as one of the most enticing causes of action in recent memory” because the cases looked simultaneously very winnable and very lucrative. When the client is “a young child with his whole life ahead of him,” Waters told Fisk, “the jury appeal is unparalleled.” Moreover, as Fisk reported, “the potential damages could be astronomical”—in the range of $10 million to $30 million per case. The stage seemed set for one of the greatest product-liability sagas since the tobacco lawsuits of the 1990s.

But two surprise developments shattered the momentum. The first was indirectly related to 9/11. Immediately following the attacks, Congress and President Bush rushed to authorize the creation of the Department of Homeland Security. The bill written for that purpose consisted of 187 pages of dense text, and it is likely that not a single member of Congress actually had the chance to read it cover to cover before voting on it. It was only a day or so before the vote—which proved too late to do anything about it—that
a brief rider was mysteriously inserted into the bill by a legislator who had chosen to rema
in anonymous. It was only two paragraphs long, but it effectively set up an almost impenetrable shield protecting Eli Lilly from product-liability lawsuits targeting thimerosal—and the makers of any other individual ingredients used in vaccine recipes. The discovery of the rider caused a brief outcry; clearly, its sudden appearance in urgent, entirely unrelated legislation revealed the lobbying hand of the pharmaceutical industry or someone friendly to it.

Families were now obliged to pursue their cases through a legal process known as vaccine court or, officially, the National Vaccine Injury Compensation Program. Since the late 1980s, the vaccine court was where most people who could demonstrate that they had plausibly been hurt by a vaccine had received compensation, financed by a tax on every vaccine sold. The court reimbursed families for medical and legal costs, but payments in case of death, as well as for “pain and suffering,” were capped at $250,000.

The vaccine court already recognized certain kinds of injuries as
sufficiently documented as to require no argument about the underlying biological mechanisms. It was common knowledge, for example, that the polio vaccine, in rare cases, actually
caused
polio, and that the DTP vaccine could cause anaphylactic shock. Autism, however, was not on the list of recognized adverse outcomes. This meant that lawyers seeking compensation for their clients would have to present a theory linking autism to a vaccine, back up the theory, and then make the argument that the children in question had autism because of the vaccination.

This was not an easy set of hurdles.

Then came the second surprise, when the judges at the vaccine court—referred to as “special masters”—found themselves overwhelmed by the sudden wave of new cases centered on autism. During its first decade or so, the court had been asked to adjudicate some 4,600 petitioned cases. Not one had alleged that a vaccine had caused autism until 1999, when a single such case was filed. No autism petitions were received the following year, but 18 were filed in 2001. From there, the caseload soared. During the first six months of 2002, 300 new autism filings hit the court. Six months later, that number had more than doubled. The following year, 2003, saw another 2,438 claims come in. Eventually, the total approached 5,000 autism-only cases waiting to be heard.

It was at this point that the judges announced a special approach to hearing these cases. Rather than working through them one at a time—a process that threatened to consume the rest of their working lives and delay resolution for thousands of families—they would cut through the logjam by putting the vaccines-cause-autism argument itself on trial. They would do this by taking a “test case” approach to the dispute. Lawyers for the families were invited to choose a few representative children and to use their medical histories, buttressed by scientific research, to illustrate the process by which vaccines gave them autism. If they succeeded, the remaining families could rely on that precedent for their claims. If the test cases failed, however, it would be the end of the road for claims about autism.

With billions of dollars in compensation in the balance, the stakes were huge. And now the families had a date to look forward to. The
vaccine theory of autism was to go on trial in March 2004, with a verdict to be reached by that summer.

In Washington, DC, March 2004 came and went, and with it, so did the start date for the vaccine court to begin hearing arguments. The lawyers all found that they needed more time for the detailed research and discovery required for such a technically complex subject. In particular, the lawyers for the families admitted that they did not yet have sufficient evidence, and needed certain studies that were presently under way to reach completion. After several postponements over more than a year, a start date was set for well in the future: June 2007. In short, families would have to wait quite some time before this legal test of their story would even get started.

In the meantime, one more piece of bad news for the vaccine activists appeared in the form of an “own goal” scored against them by David Kirby, the author of
Evidence of Harm
. In 2005, in an exchange with a skeptical blogger, Kirby had recognized a simple benchmark test for the thimerosal theory: track the autism rate in California for a few years; if it goes down, the theory is correct. That would be because, in the early 2000s, vaccine manufacturers stopped using thimerosal in most vaccines given to children. It stood to reason that babies born in the new millennium would have a lower exposure to methylmercury via vaccines and therefore less autism would be reported. In an email to the blogger, who called himself Citizen Cain, Kirby conceded: “If the number of three- to five-year-olds diagnosed has not declined by 2007 that would deal a severe blow to the autism-thimerosal hypothesis.”

In 2007, the deadline arrived, but the reported prevalence of autism in California did not decline.
It went up. The year after that, it went up again.

This steady parade of setbacks for the vaccine argument slowly dismantled its proponents’ main achievement: transforming what had always been a fringe tendency to mistrust vaccines into a mainstream cultural phenomenon. This transformation was abetted by the mainstream media, which often described the controversy as a “debate” in which scientists and the parents opposing them were granted equal stature. But that practice began to wane in 2007 and 2008, as the
scientific data piled up, weakening the perception that
the story had two sides. Somewhere in this period, too, the producers who optioned the movie rights to David Kirby’s book,
Evidence of Harm
, must have seen the oxygen leaking from his story of parents struggling to get at the truth. The movie was never made.

And yet, even as it was losing momentum, the campaign blaming vaccines received one last jolt of fresh energy, in the person of reality-TV star, comedienne, and former
Playboy
model Jenny McCarthy. McCarthy’s son had been diagnosed with autism in 2005, so she came relatively late to the autism conversation, in 2007. But she was glamorous, confident, and highly visible. For years to come, McCarthy’s face and name would be identified with the controversy, and she would be known for her defiance of experts. Claiming that her son’s autism was the result of vaccination, and that she had figured out how to “heal” him using alternative remedies, she chose to advertise her complete lack of formal education in medicine, psychology, nutrition—or anything related to science—as an asset. “The University of Google is where I got my degree from,” she famously said on
The Oprah Winfrey Show
, a line that was met with warm applause.