None of that criticism or any of the detailed analysis of the case has tempered Kirby’s rhetoric. At an autism conference in the spring of 2009, I spoke with Jon Poling at the back of the empty ballroom. “It’s a no-fault system,” he said. “So the ruling didn’t say anything about the science. When they got up there and said, ‘In no way have we said vaccines cause autism,’ it’s true. . . . It doesn’t say anything about causation. The conclusion they came to is about compensation.” A few hours later, David Kirby stood in front of hundreds of people at a lectern in that very room and gave his version of the case. “They conceded it twice,” he said of the government’s decision to award the Polings compensation. “And the short version of [the concession] is, in my own words, ‘Hannah’s autism was caused by a vaccine-induced exacerbation of her underlying mitochondrial dysfunction.’ ”
48 The National Childhood Vaccine Injury Act is sometimes incorrectly referred to as the Vaccine Injury Compensation Act, or VICA. Some of the confusion stems from the fact that the official name of the program administered by the Vaccine Court is the National Vaccine Injury Compensation Program, or NVICP.
49 Here, Kirby was referring to a series of studies done by the Geiers, the University of Kentucky’s Boyd Haley, Northeastern University’s Richard Deth, and the University of Arkansas’s Jill James, all of which he also cited during his appearance on Imus in the Morning. In June 2010, the FDA accused Haley of multiple violations resulting from his marketing of an untested industrial compound used for heavy metal detoxification to parents of autistic children as a “supplement.” The paper by Deth to which Kirby was referring had been rejected by three journals before it was published; one of Deth’s claims was that massive B12 injections could help cure autism. In the text of her paper, James explicitly wrote, “[A]ttempts to interpret these findings are clearly speculative.”
CHAPTER 18
A CONSPIRACY OF DUNCES
Almost exactly three months after Evidence of Harm hit bookstores, Rolling Stone and the online magazine Salon.com simultaneously published “Deadly Immunity,” a 4,700-word story on mercury in vaccines written by Robert F. Kennedy, Jr. Kennedy, the eldest son and namesake of the former attorney general and New York senator, described how he’d come to investigate the issue: “I was drawn into the controversy only reluctantly. As an attorney and environmentalist who has spent years working on issues of mercury toxicity, I frequently met mothers of autistic children who were absolutely convinced that their kids had been injured by vaccines. Privately, I was skeptical.”
Then, he wrote, he began to look at the information these parents had collected. He pored over the transcript from the 2000 CDC-organized meeting at the Simpsonwood lodge outside Atlanta and spoke with members of SafeMinds and Generation Rescue. He also studied the work of the “only two scientists” who had managed to gain access to government data on the safety of vaccines: “Dr. Mark Geier, president of the Genetics Center of America, and his son, David.” In the past three years alone, Kennedy wrote, “the Geiers have completed six studies that demonstrate a powerful correlation between thimerosal and neurological damage in children.”
It wasn’t long before Kennedy became convinced that he’d stumbled upon “a chilling case study of institutional arrogance, power and greed.” If, as he believed to be the case, “our public-health authorities knowingly allowed the pharmaceutical industry to poison an entire generation of American children, their actions arguably constitute one of the biggest scandals in the annals of American medicine.” Kennedy went on to quote SafeMinds’ Mark Blaxill, whom he identified as the vice president of “a nonprofit organization concerned about the role of mercury in medicine,” as Blaxill accused the CDC of “incompetence and gross negligence” and claimed that the damage done by vaccines was “bigger than asbestos, bigger than tobacco, bigger than anything you’ve ever seen.”
In the article’s final paragraph, Kennedy warned his readers of the scandal’s likely effects on the future: “It’s hard to calculate the damage to our country—and to the international efforts to eradicate epidemic diseases—if Third World nations come to believe that America’s most heralded foreign-aid initiative is poisoning their children. It’s not difficult to predict how this scenario will be interpreted by America’s enemies abroad.” In fact, he wrote, he was certain that the failure of a generation of “scientists and researchers . . . to come clean on thimerosal will come back horribly to haunt our country and the world’s poorest populations.”
Unlike David Kirby, Kennedy did not have the luxury of threading these indictments through hundreds of pages; as a result, the magnitude of the implied conspiracy was more immediately obvious. In order for what Kennedy was claiming to be true, scientists and officials in governmental agencies, nonprofit organizations, and publicly held companies around the world would need to be part of a coordinated multi-decade scheme to prop up “the vaccine industry’s bottom line” by masking the dangers of thimerosal.
In Kennedy’s telling, the plotting had been going on since the Great Depression, but it had begun in renewed earnest five years earlier “at the isolated Simpsonwood conference center,” a location that Kennedy said was chosen because it was “nestled in wooded farmland next to the Chattahoochee River, to ensure complete secrecy.” (In reality, the location was chosen because a series of previously scheduled conferences had booked up all the hotel rooms within fifty miles of Atlanta.) Kennedy relied on the 286-page transcript of the Simpsonwood conference to corroborate his allegations—and wherever the transcript diverged from the story he wanted to tell, he simply cut and pasted until things came out right. Again and again, he used participants’ warnings about the reckless manipulation of scientific data by people with ulterior motives to do the very thing they were afraid would happen. The CDC’s Robert Chen was one of the victims of Kennedy’s approach. His actual quote is as follows:
Before we all leave, someone raised a very good process question that all of us as a group needs to address, and that is this information of all the copies we have received and are taking back home to your institutions, to what extent should people feel free to make copies to distribute to others in their organization? We have been privileged so far that given the sensitivity of information, we have been able to manage to keep it out of, let’s say, less responsible hands, yet the nature of kind of proliferation, and Xerox machines being what they are, the risk of that changes. So I guess as a group perhaps, and Roger [Bernier, the associate director of science at the National Immunization Program], you may have thought about that?
In Kennedy’s hands, it became this:
Dr. Bob Chen, head of vaccine safety for the CDC, expressed relief that “given the sensitivity of the information, we have been able to keep it out of the hands of, let’s say, less responsible hands.”
Even more egregious was Kennedy’s slicing and dicing of a lengthy statement by the World Health Organization’s John Clements. In this instance, Kennedy transposed sentences and left out words. Here is what actually appeared in the transcript, with italics added to indicate the sentences Kennedy used in his story:
And I really want to risk offending everyone in the room by saying that perhaps this study should not have been done at all, because the outcome of it could have, to some extent, been predicted and we have all reached this point now where we are left hanging. . . .
There is now the point at which the research results have to be handled, and even if this committee decides that there is no association and that information gets out, the work has been done and through Freedom of Information that will be taken by others and will be used in other ways beyond the control of this group. And I am very concerned about that as I suspect it is already too late to do anything regardless of any professional body and what they say. . . .
My message would be that any other study—and I like the study that has just been described here very much, I think it makes a lot of sense—but it has to be thought through. What are the potential
outcomes and how will you handle it? How will it be presented to a public and a media that is hungry for selecting the information they want to use for whatever means they have in store for them?
In “Deadly Immunity,” that was changed to read:
Dr. John Clements, vaccines advisor at the World Health Organization, declared flatly that the study “should not have been done at all” and warned that the results “will be taken by others and will be used in ways beyond the control of this group. The research results have to be handled.”
To top it all off, Kennedy married together two separate comments made by the developmental biologist and pediatrician Robert Brent. In the first one, Brent said:
Finally, the thing that concerns me the most, those who know me, I have been a pin stick in the litigation community because of the nonsense of our litigious society. This will be a resource to our very busy plaintiff attorneys in this country when this information becomes available. They don’t want valid data. At least that is my biased opinion. They want business and this could potentially be a lot of business.
Thirty-eight pages later, Brent addressed the topic of “junk scientists”:
The medical/legal findings in this study, causal or not, are horrendous and therefore it is important that the suggested epidemiological, pharmacokinetic and animal studies be performed. If an allegation was made that a child’s neurobehavioral findings were caused by thimerosal containing vaccines, you could readily find a junk scientist who would support the claim with “a reasonable degree of certainty.” But you will not find a scientist with any integrity who would say the reverse with the data that is available. And that is true. So we are in a bad position from the standpoint of defending any lawsuits if they were initiated and I am concerned.
In a distortion that the editor of a high school newspaper would have balked at, Kennedy took these two statements, switched their order, and ran them together:50
“We are in a bad position from the standpoint of defending any lawsuits,” said Dr. Robert Brent, a pediatrician at the Alfred I. duPont Hospital for Children in Delaware. “This will be a resource to our very busy plaintiff attorneys in this country.”
In the overall scheme of the piece, that type of quote massaging was considered so insignificant that it didn’t warrant inclusion in the more than five hundred words’ worth of “notes,” “clarifications,” and “corrections” that were eventually appended to the piece. (The misuse of Chen’s quote wasn’t acknowledged either.) Among the issues that were addressed were incorrect attributions, inaccuracies about which vaccines contained thimerosal at different points in time, a misrepresentation of the number of shots children had received in the 1980s, and a false claim about a scientist having a patent on the measles vaccine.
None of this put a dent in Kennedy’s conviction that his allegations were valid, and in the weeks and months to come, he kept on repeating many of the errors Rolling Stone and Salon.com had already publicly acknowledged were wrong.51 Just four days after a correction confirmed that the story had misstated the levels of ethylmercury infants had received—it was actually “40 percent, not 187 times, greater than the EPA’s limit for daily exposure to methyl mercury”—Kennedy told MSNBC’s Joe Scarborough, “We are injecting our children with four hundred times the amount of mercury that FDA or EPA considers safe.” Kennedy also told Scarborough that children were being given twenty-four vaccines and that each one of them had “this thimerosal, this mercury in them.” Those statements were not even remotely true: In 2005, the CDC recommended that children under twelve years old receive a total of eight vaccines that protected against a dozen different diseases. Only three of those vaccines had ever contained thimerosal, and all had been manufactured without the preservative since 2001.
That Scarborough didn’t ask Kennedy to produce evidence supporting his accusations is not surprising: Scarborough had long had a hunch that vaccines were to blame for his teenage son’s “slight form of autism called Asperger’s.” Kennedy’s research, it seemed, had confirmed his suspicions once and for all. “There’s no doubt in my mind,” Scarborough said, “and maybe it’s two years from now, maybe it’s five years from now, maybe it’s ten years from now—we are going to find out thimerosal causes, in my opinion, autism.”
50 I attempted to contact Kennedy more than twenty times over an eighteen-month period. At various points, I was told that he was considering my interview request, that he was on vacation, that he was dealing with a family crisis, that he wasn’t feeling well, that he was behind in his e-mails, and that he was on the verge of calling me back.
51 More dismaying than Kennedy’s repetition of his discredited accusations was Rolling Stone’s insistence that the essence of the story remained correct. “It is important to note,” the magazine’s editors wrote in a statement that appeared in print and online, “that none of the mistakes weaken the primary point of the story.” Five years later, the magazine appeared to have had a change of heart: In the spring of 2010, Rolling Stone removed the piece, along with all references to it and to the controversy it created, from its website.
CHAPTER 19
AUTISM SPEAKS
At the end of the twentieth century, there were only a handful of national autism advocacy organizations, the best known of which were Bernard Rimland’s Autism Research Institute and its offshoot, Defeat Autism Now! Newer on the scene were the two groups that had begun in the mid-1990s, during a period of mounting frustration about the general state of autism research: The National Alliance for Autism Research, which Eric and Karen London had founded in 1994, and Cure Autism Now, which Hollywood producer Jonathan Shestack and his wife, television art director Portia Iversen, had started in 1995. Because of the environment in which they were launched, both groups had been relatively open-minded about the causes of autism—their leaders believed the best way to combat the neglect of the research community was to cast a wide net in search of answers.
The second-generation organizations that flowered in the early 2000s tended to follow a different model. They’d been started in large part in response to a specific set of circumstances—the fact that no one knew the effects of the amount of mercury being injected into children—and as a result, they tended to be more single-minded in their focus and more populist in their character. The best known of these organizations were SafeMinds and Generation Rescue. There was also Medical Interventions for Autism (MIA), which Liz Birt founded for the express purpose of raising money to support Andrew Wakefield; Talk About Curing Autism, which began when Lisa Ackerman posted a message on a Yahoo! Message Board inviting other parents in Southern California to join a “problem-solv[ing]” support group that emphasized alternative diets and treatments; AutismOne, which was started by parents named Teri and Ed Arranga and whose mission statement reads, “Parents are and must remain the driving force of our community. . . . AUTISM IS A PREVENTABLE/TREATABLE BIOMEDICAL CONDITION. Autism is the result of environmental triggers”; and the National Autism Association, which preached, “Autism is a biologically based, treatable disorder.”
The shared philosophical underpinnings of these groups could be seen in their repetition of a handful of key words and phrases: “Parents” and “community” were coded ways of signaling an opposition to an establishment that was beholden to the pharmaceutical industry; “the environment” and “environmental triggers” were euphemisms for vaccines; “alternative treatments” represented controversial methods for heavy-metal detoxification or severely restrictive diets; “biologically based” meant not genetic; and “treatable” and “curable” signified the crucial ingredient the organizations could offer that the mainstream could not: “hope.”
By 2005, a preoccupation with vaccine safety and an opposition to traditional institutions were viewed by an ever-growing number of “autism advocates” as prerequisites for membership in their community. The organization most at risk of being a casualty of this ideological purge was the National Alliance for Autism Researc
h, which, as Eric London puts it, remained steadfast in its opposition to the “DAN! model”—i.e., “decid[ing] what causes autism and fund[ing] those studies that proved it.” Indications of this rift were evident as far back as 1998, when London wrote a critique of the methodology of Wakefield’s Lancet paper in a NAAR newsletter. In his piece, London did his best to make it clear he was only addressing the way Wakefield had performed his research and was not writing about the legitimacy of the vaccine theory. “I said, Look, there’s room to examine the hypothesis,” London says. It didn’t matter: “I received a death threat. Someone read my article and decided that, you know, vaccines were causing autism and people like me were defending vaccines.”
The fissure between NAAR and those that disdained their approach had become a gulf by 2002, when The New England Journal of Medicine published an MMR study that NAAR had helped to fund. Because the results indicated a lack of causality between the vaccine and autism, NAAR was accused of shilling for the pharmaceutical industry; because the group hadn’t insisted that mercury be included in the study, it was charged with betraying autistic children.52 Eventually, the attacks became so fierce that the group felt compelled to release a statement justifying its work. “While [the thimerosal hypothesis] may merit additional research, it does not negate the validity of the Danish study’s conclusions,” it read. “Peer-reviewed research cannot and should not be refuted on the basis of hypothesis.”
Even in the midst of all this intramural strife, NAAR remained one of the most successful autism-related organizations in the world. Its Walk for Autism Research had become the premier autism fund-raising event in the country and its Autism Tissue Program—which collected donations from parents and made them available to qualified scientists for research—had assembled the largest collection of brain tissue from autistic children in the world.53
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