In a Different Key

by John Donvan

  It was inevitable, of course, that Bob Wright’s eye would be caught early by the two most impressive parent-run organizations sponsoring scientific research. By the time Autism Speaks launched, NAAR—the creation of Eric and Karen London—and Cure Autism Now, founded and still run by Jon Shestack and Portia Iversen—represented two decades of combined experience, with long mailing lists and well-developed networks of scientists already in place. Moreover, NAAR had the brain-tissue bank, and CAN had its library of DNA. Both, which had taken years to build, were unique and precious. Even as Autism Speaks was launching in 2005, Wright knew he wanted these assets. He sent out Alison Singer to get the merger talks started.

  For the first time, but not the last, Autism Speaks was about to hurt some feelings.

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  JON SHESTACK was dead set against any kind of merger with Wright’s group. His reasons were partly personal. He loved running Cure Autism Now. He loved giving everything he had to a cause that drew upon talents in him that he never knew he had, and that fed his passion as much as it exhausted his days. Moreover, it was his way to be doing something for his son Dov, which he found so much more conducive to his Hollywood producer’s personality than doing nothing. He had no interest in giving any of that up to become part of a behemoth run out of New York.

  Shestack also had a philosophical aversion to seeing CAN swallowed up. He had come to believe that it was a good thing for science when researchers had more, not fewer, places to turn for money. When a scientist was denied a grant from NAAR, for example, there was always CAN to try next, or vice versa. CAN and NAAR had reached a productive détente under which, despite a somewhat rivalrous relationship, the ground each group staked out for research was often non-overlapping. Shestack saw benefit in the existing arrangement, where no nonprofit group had monopoly power over the choice of avenues of autism science to explore.

  That was why he saw Autism Speaks, which was also angling for NAAR—and at least one other smaller nonprofit—as a threat. Years earlier, he had turned down the chance to merge with NAAR, but after Alison Singer called him for the first time, and told him of Bob Wright’s interest in joining forces, Shestack immediately called the Londons in Princeton, and proposed that they all reconsider a marriage. A combined CAN-NAAR organization, Shestack argued, would serve as a counterweight to Autism Speaks, and that would be better for everyone.

  But the Londons did not see it that way. They had been meeting with the Wrights, and had already concluded that combining with Autism Speaks could only leverage their work to a higher plane, with the increased funding and visibility that Wright’s clout was proven to produce. Shestack pleaded with the Londons not to go ahead with it, but he had no idea how far along the Londons were in their talks with Singer and Wright. On November 30, 2005, Autism Speaks and NAAR issued a joint statement announcing “the consolidation of the two charities.” Three members of NAAR’s board, including Eric London, would sit on the board of Autism Speaks, but the NAAR name was gone. The “new structure,” according to the press release, “will collectively be known as Autism Speaks, Inc.”

  Shestack was given a heads-up about the merger only on the day it occurred, and only a short time before it was publicly announced, when Singer, in New York, delayed her arrival for a meeting long enough to call his Los Angeles home from the sidewalk downstairs. Sitting herself down on someone’s stoop on a side street off Madison Avenue, she braced herself for what she was about to do. Singer liked and respected Shestack, whom she had worked with when he had been interviewed for the “Hidden Epidemic” series. She also knew he would take the news hard. She wanted him to hear it from her.

  Shestack was in the shower when she called, and asked her to call back a few minutes later. When she did, the expected happened. She heard Shestack let loose a string of curses, followed by a diatribe on why what Autism Speaks was trying to do was damaging to science. Singer heard him out but, still Wright’s right hand in this matter, she had another message to deliver. As gently as she could, she made it clear to Shestack that if he chose to keep running CAN as an independent organization, he could expect no consideration from Autism Speaks in the competition for funding, media attention, or even the loyalty of Hollywood celebrities who, Singer pointed out, had every reason to want to curry favor with Bob Wright. Furthermore, Autism Speaks would soon be opening an office in Los Angeles, staging walks there, and taking out ad space in newspapers and on billboards. Shestack heard this message as Join us or we will crush you. Singer used no such language, but then, she did not feel it was necessary. She knew Shestack would get the point. She asked him to take some time, and to consider, please, whether a merger might not be the best thing for everyone.

  Shestack, despondent, took the matter to one of his closest confidants at CAN, autism father Peter Bell, who was serving as its president. Bell was to Shestack what Singer was to Wright—a friend, and a dedicated activist, who, like Singer, had given up a successful career in another field—as a marketing executive in the pharmaceutical industry—to work full-time for Cure Autism Now. Bell had even relocated his family from New Jersey to Los Angeles. If anyone would have an idea for fending off what Shestack saw as a takeover threat, it would be Bell.

  But Bell surprised Shestack. He told him that a fight against Bob Wright was not winnable. Moreover, like the Londons, he saw good reasons for being part of the bigger organization.

  Some months later, Shestack learned that most of the board of Cure Autism Now felt the same way. Autism Speaks looked like the future, and it made no sense not to be part of it. When the matter was put to a vote, the proposal passed. Only two members voted against. Jon Shestack was one. Portia Iversen, his wife and cofounder, was the other.

  On November 29, 2006, a joint statement announced the merger of Cure Autism Now and Autism Speaks. Once again, a name disappeared. “The consolidated organization,” the statement read, “will be known as Autism Speaks, Inc.” Peter Bell was immediately hired to serve as executive vice president of programs and services, and moved his family back east. Shestack and Iversen were given seats on the Autism Speaks board. When their terms ended three years later, neither was invited back.

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  AUTISM SPEAKS’S STEWARDSHIP of its research mission would prove to be controversial, to say the least. On the one hand, the money it began funneling into new scientific investigation quickly surpassed anything a private charity had ever contributed to autism science before. In 2006, the organization disbursed almost $14 million, which was 26 percent more than CAN and NAAR combined had given scientists in 2005. In 2007, Autism Speaks notched an even higher number: $24 million. In 2008, it jumped yet again, to $27 million. In addition, the organization now controlled both the DNA library and the brain-tissue bank. Eventually, Autism Speaks would start contributing to a global consortium of scientists set on sequencing the entire genomes of ten thousand individuals from families affected by autism.

  Autism Speaks’s political lobbying helped steer tens of millions of dollars of federal money into autism research, and its awareness programs also alerted more scientists than ever before to the possibilities and opportunities—for themselves—in the study of autism. Annually, scientists from more than forty countries were flocking to the annual meeting of the International Society for Autism Research, of which Autism Speaks became a lead sponsor and advertiser.

  And yet, within a few short years, Autism Speaks’s performance in the area of scientific research would come under question from all sides, and the group would yield leadership position in this realm to others, while Bob Wright’s dream of a “big tent” organization—synchronized, harmonized, and centralized—would be seen sagging dangerously low, pulled down by the weight of too many irreconcilable viewpoints.

  And all because Autism Speaks became entangled in the vaccine controversy, where the science on one side didn’t add up, and never had.

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  A STORY UNRAVELS

  Andrew Wakefield’s work had alw
ays contained enough loose threads that critics could begin pulling it apart almost as soon as it was published in The Lancet, back in 1998. Richard Horton, The Lancet’s editor, had known the paper would spur controversy and had arranged for a rebuttal to appear in the very same issue.

  Written by a pair of American vaccine researchers at the CDC, Robert Chen and Frank DeStefano, it was a preemptive broadside in which they argued that raising the question of a causal link between vaccines and autism was irresponsible, even dangerous. The facts, they had written, were grounds for reassurance about the MMR vaccine’s safety. They cited its safe use in “hundreds of millions of people worldwide,” with not a single report of anyone “developing either chronic bowel or behavioral problems.” They cited the work of scientists who had attempted without success to reproduce Wakefield’s findings “using more sensitive and specific assays.” They pointed out that Wakefield’s patients did not represent a random sampling, and that his reliance on parents’ memories to pinpoint the onset of digestive and behavioral issues was problematic. They also showed that in several of the children, the behavioral problems had existed before the bowel problems.

  Over the following year, the scientific evidence against Wakefield continued to mount. In June 1999, The Lancet had published an epidemiological investigation led by a Royal Free Hospital researcher named Brent Taylor. His team had examined vaccination records for nearly five hundred children who received diagnoses of autism over a span of years that included the introduction of the MMR in Britain. A causal link would be expected to show up as a sudden uptick in autism concurrent with MMR use. Taylor’s team found none.

  American researchers weighed in next, with a study out of California, published in early 2001, comparing trends in MMR vaccination and autism diagnosis among children born in California in 1980 and 1994. “Essentially no correlation was observed,” the study authors reported in The Journal of the American Medical Association.

  By 2006, the alleged link had been investigated by epidemiologists in Japan, Finland, the United States, Britain, Denmark, Canada, and elsewhere—more than a dozen times in total—and always the researchers found no meaningful association between MMR use and autism.

  Other researchers, meanwhile, sought evidence of the proliferation of the measles virus that Wakefield had reported finding repeatedly in the intestines of children with autistic behaviors. But these studies too failed to replicate his findings.

  The news media did not ignore this near-unanimous conclusion of scientists in half a dozen countries. The studies almost always made news, but they did so as part of a continuing narrative of competing truths—that of the scientists against that of the families. And somehow Wakefield continued to get the benefit of the doubt.

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  IT WAS A British freelance journalist who did the legwork that led to Wakefield’s undoing. Brian Deer was an investigative reporter who often wrote for the Sunday Times, exposing malfeasance in the healthcare industry. In late 2003, the television movie about Wakefield and his theories, Hear the Silence, was getting a good deal of buzz just ahead of its premiere, and that buzz was giving fresh energy to public discussion of the MMR question. An editor at the Sunday Times, looking to catch that wave, thought to ask Deer to come up with “something big” on MMR.

  Deer tackled the MMR story with a deep skepticism not yet demonstrated by most of his colleagues in the press. One of Deer’s first calls was to a mother whose son had been part of the Lancet study. Deer did not give his real last name when he reached out to her, a maneuver he had cleared in advance with his editors. Instead, he used his middle name so that her guard would not go up if she were familiar with his reporting. Thus deceived, the woman spoke to Deer for several hours, answering his questions in ways that stunned him.

  She told Deer, for example, that she had not noticed her son’s first behavioral symptoms until months after he had been given the MMR injection—not within fourteen days, as Wakefield had reported. In a later interview with this mother, Deer also learned that it was no accident that she had chosen to have her child’s intestinal problems treated at the Royal Free Hospital. As he would shortly discover, several of the families had consulted with a personal-injury lawyer who, in the late 1990s, was in the early stages of preparing a product-liability lawsuit against the manufacturers of MMR. It was the lawyer who guided several families to ask their family doctors for referrals to Wakefield. Yet Wakefield’s Lancet paper had described all the families as “self-referred.”

  Deer also discovered that Wakefield and the attorney had previously corresponded about the possibility of establishing a causal link between the vaccine and autism sufficient to justify bringing suit. With the lawyer’s intervention, it was arranged for Wakefield to receive roughly $80,000 to fund a pilot study—the very study that was later published in The Lancet. Moreover, Wakefield was passing along results of the Lancet study to the legal team before it was even in print.

  When Deer asked Wakefield to respond to these discoveries, Wakefield tried to make them sound like a minor lapse in publishing etiquette. “I believe that this paper was conducted in good faith,” he said. “It reported the findings.” He wrote a letter to The Lancet denying any and all accusations of ethical wrongdoing. And in every interview, he reasserted his original findings.

  But anyone who had ever conducted research, or relied on it, immediately grasped how damning Deer’s story was. These included ten of Wakefield’s twelve coauthors on the paper, who had been kept in the dark about Wakefield’s involvement with lawyers. Embarrassed, they publicly retracted the part of the paper that raised a link between MMR and autism. The Lancet’s editor declared in writing: “If we had known the conflict of interest Dr. Wakefield had in his work, [the article] would have been rejected.” Britain’s chief medical officer publicly accused Wakefield of “mixing spin and science,” and the health secretary called for Wakefield to be investigated as “a matter of urgency.”

  The British press, which had previously been a megaphone for Wakefield, helping to stir up the fear about MMR, now rushed to condemn him. “His credibility lies in ruins,” wrote the Sun. “He has much to answer for.” The Independent portrayed Wakefield as an “increasingly isolated man…led astray by the power of his own belief.”

  And yet, even as they turned on Wakefield, many media outlets remained reluctant to declare the death of his renegade hypothesis about MMR. Remarkably, a 2004 editorial in the Independent argued the opposite, insisting that “the urgent need now is for more real study of autism and MMR.” The Sun pumped fresh oxygen into the controversy too, asserting it as “a fact that until the mysteries of autism are fully explained, MMR may never be fully accepted.”

  In short, fear of MMR lived on, and in some quarters, so did the conviction that Wakefield’s science might still be right, even if he had broken a rule or two along the way. To some, his financial arrangements seemed beside the point. “He is not an accountant,” one supportive mother told a reporter. “He is a doctor.” If anything, the parents who stood by Wakefield became even more fervent in their affection for him.

  As for Wakefield, he never flinched. He would always maintain that Deer’s story was part of a smear campaign, a conspiracy designed to destroy him. By then, he was spending most of his time in the United States and he continued to practice medicine—treating American children, speaking to American audiences, and appearing, as ever, to relish the fight.

  “I have absolutely nothing to hide,” he told a reporter, with no note whatsoever of remorse, fear, or uncertainty. “There has been talk of an inquiry,” he said. “I would welcome this.”

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  WAKEFIELD’S CLAIM OF a conspiracy became a familiar part of the vaccine controversy. Often, whenever science did not support the vaccine activists’ theories about how autism was caused by mercury or MMR, this boosted their conviction that the negative results were part of a plot to hide the truth. That, of course, had been the thrust of Robert Kennedy’s Rolling St
one portrait of a massive government cover-up of thimerosal’s dangers. According to those who believed in the conspiracy, it had been under way for decades. The drug companies were in on it, along with American and British medical authorities, and, at a minimum, hundreds of scientists around the world, all of whom knew that vaccines were causing autism. Driving the plot, according to this view, were career ambitions and money. The pharmaceutical industry, it was said, was panicked by the prospect of product-liability lawsuits and had been buying off researchers, regulators, journalists, and perhaps a few politicians around the world. It had been going on since the 1930s. This was why science kept failing the vaccine theory. Among the institutions said to have been corrupted were the FDA, the NIH, the IOM, and of course the CDC.

  The theory drew adherents from outside the autism community as well. To some on the far left politically, it fit well alongside narratives about the evils of large corporations. For those on the far right, it seemed another example of government bureaucrats colluding to take away people’s rights to make their own choices about medical treatment.