by John Donvan
It was dismally similar to the stories British parents had shared with the news media for the preceding two years. But Redwood’s account differed from the British narrative in a crucial respect. It had nothing to do with the measles virus at the heart of Wakefield’s theory. She never mentioned measles—or the MMR vaccine, for that matter. Instead, as Redwood explained it, an entirely different culprit was behind her son’s injury.
That culprit was mercury. It was true: vaccines contained mercury, a known toxin. Since the 1930s, mercury had been added to many vaccines in order to guard against contamination. The bottles kept in hospitals and doctors’ offices contained multiple doses and were corked with rubber stoppers. A syringe needle was inserted to siphon off a single dose each time a patient had to be given a shot. In theory, the needles were sterilized before each pull of vaccine. In practice, live microorganisms were sometimes able to get into the fluid, spoiling the whole bottle, and putting patients at risk of infection.
In the 1930s, to prevent this risk, Eli Lilly and Company began marketing a product called thimerosal, an antibacterial and antifungal powder designed to be used as a preservative, usually in solution. The second syllable of the word thimerosal—mer—was derived from one of its key components, mercury, which made up almost half its molecular weight. In minute measure—as little as .01 percent in solution—thimerosal proved so effective at preserving sterility that for decades it was a standard ingredient in a wide range of products, from nasal sprays to contact lens solution. But even after the manufacturers of those products switched to new preservatives, pharmaceutical firms stuck with thimerosal in vaccines. By the late 1990s, it had been used as an ingredient in more than thirty separate vaccines.
Mercury’s presence inside the body does not necessarily warrant an alarm call. Virtually all humans have some amount of the compound known as methylmercury in their systems, a result of traces in the food they eat and in the air they breathe. Dosage matters. A typical six-ounce can of white tuna fish, for example, contains approximately 60 micrograms of methylmercury—approximately two-millionths of an ounce, which has never been grounds for a mass recall of tuna from the grocery store. At the same time, there are often warnings about tuna, at least for certain populations, like pregnant women and young children, reflecting the fact that precise risk levels for mercury in humans have always been a gray area. There is not much data, since experiments based on deliberately feeding people mercury would be ethically impossible.
Guesses have been made, however, by studying accidentally poisoned populations, such as the several thousand Iraqis who, in the early 1970s, ingested imported grain that had been treated with a methylmercury fungicide. Neurological damage was widespread, and included death. Afterward, scientists combed over the data from Iraq and a few other places with known high exposure. Out of this work, in 1999, the US Environmental Protection Agency produced a new so-called reference dose for mercury—the amount that humans can safely ingest every day without undue effect over time. But the EPA built in an extremely cautious—and therefore large—margin of safety. The number was 0.1 micrograms per kilogram of body weight per day, which deliberately “overstated” the statistically established risk by a factor of ten, to allow for scientific uncertainty. For a 170-pound man, that came to about 8 micrograms daily, or what he would get in about one-eighth of a can of white tuna. That was maybe three forkfuls, which demonstrated just how cautious the EPA wanted to be with its reference dose, in its uncertainty about how much trace mercury is too much. And yet, looked at another way, the EPA limit was not all that stringent. That 170-pound man could still eat a lot of tuna fish—47 cans a year—and stay within the reference dosage.
Vaccines made with thimerosal—like the ones Lyn Redwood went to Congress to sound the alarm about—contained 25 micrograms of mercury per shot. That seems small: less than half a tuna can’s worth. Also, nobody is routinely given 47 shots a year, nor does the mercury compound used in the vaccine preservative break down in the body in the same manner, or linger as long there, as the mercury found in food. Nevertheless, it was only in 1998, in response to questions asked by Congress, that the scientists trusted with guiding US immunization policy even began to tally up how much mercury was getting into the bodies of young children by means of vaccinations. The result surprised them because it was more than they had realized.
In the mid-1980s, the DTP vaccine, which protected against diphtheria, was the only thimerosal-containing vaccine regularly given to infants. But soon, more shots were added to the recommended schedule. By 1991, it included the Hib vaccine, a defense primarily against influenza-induced meningitis, and the hepatitis B shot—with all three taking place, and followed up by boosters, during an infant’s first six months. As a result, by 1999, a six-month-old infant’s exposure to the mercury in thimerosal had reached 187 micrograms. Moreover, typically, there were days when an infant received multiple shots, delivering a mercury dose of more than 60 micrograms in the space of a few minutes. That was, to return to the tuna fish example, the equivalent of more than one can, fed to a 10-pound child. Of course, shots were not a daily occurrence. They were spaced months apart, with zero thimerosal exposure in between.
At a loss to know whether these levels represented a danger to children or not, the nation’s top immunization experts decided to err on the side of caution. In July 1999, pushed especially hard by a Johns Hopkins pediatrician named Neal Halsey, the American Academy of Pediatrics (AAP) and the Public Health Service (PHS) released coordinated statements containing three recommendations: that pediatricians begin using thimerosal-free vaccines whenever possible; that vaccine manufacturers remove thimerosal from future formulations; and that the vaccine against hepatitis B, normally given at birth, be postponed in most cases to two to six months.
Bizarrely, the statement went on to say that none of these recommendations was actually justified by any known risk from thimerosal. It tried to sound unequivocally confident on this point, asserting that there was “no data or evidence of harm caused by the level of exposure.” But much of the rest of the statement seemed to undermine that certainty, as it made repeated references to the “unknown and probably” quite small risk that something might be wrong with the vaccines—and gave as their reason for calling a retreat from thimerosal use the principle that “any potential risk is of concern.”
On top of that, the AAP issued a press release containing remarks by the academy’s president, Dr. Joel Alpert, which came out sounding less than reassuring, although the opposite effect was clearly intended. “The current levels of thimerosal will not hurt children,” Alpert was quoted as saying. “But reducing the levels will make safe vaccines even safer.” The two organizations’ tangle of messages made for one of the most confusing public health announcements in US history. It was also among the most consequential.
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IF NOT FOR the experts’ strangely worded policy revision, Lyn Redwood might never have suspected a link between autism in her son and the mercury in vaccines.
But because the announcement seemed to point to a problem, it moved her to dig out her child’s immunization records, and to calculate how much mercury he had been exposed to from vaccines in his first year of life. “My worst fears were confirmed,” she later told Congress. “All of his early vaccines had contained thimerosal.”
Around the United States, other autism parents, following the same impulse, were making similar discoveries. Some had been suspicious of vaccines already, as whispers of Wakefield’s hypothesis about MMR vaccines started crossing the ocean. Cure Autism Now was soon demanding faster action by the government to get thimerosal out of vaccines. But for children who had shown signs of autism before ever receiving the MMR—and that included Redwood’s son—it had to be something else about vaccines besides the measles virus that explained what had happened to their kids. For those parents, Redwood proved a superb spokesperson.
In late 1999, Redwood created a small website devoted to the top
ic of mercury in vaccines, which quickly became a crossroads for parents who stumbled online seeking counsel and company in their grief and certainty that thimerosal had caused autism in their kids. Through this spontaneously formed network, Redwood emerged as the most prominent of the “Mercury Moms,” a moniker that stuck for a small circle of the most active mothers. Increasingly, it was how she was identified in the introductions to speeches she gave, and in TV interviews.
Redwood also had the advantage of presenting a consistent demeanor of calmness and composure. While there were times when parents blaming vaccines were depicted by critics as overwrought and ignorant, Redwood never fit that stereotype. Throughout all the adversarial discourse, she remained consistently even-tempered, earnest, and civil. Even those who thought her anti-thimerosal campaign was misguided had to acknowledge her professionalism, her preparedness, and her willingness to listen as well as speak. Like her husband, Tommy, an ER doctor, she was a medical professional—a nurse practitioner—who could engage in clinical discourse without drowning. Not only had she administered many vaccines herself in her career, but she continued to attest to the importance of vaccination as a public health priority. Her position that vaccines should be made “safer”—not eliminated—refuted the broad accusation made against the parents in her camp that they were all “anti-vaccine” extremists. Some were, to be sure, but the majority were not.
To many people, she made eminent sense in her July 2000 appearance before Congress, when she used the government’s statement on thimerosal against it. “The statement that there is ‘no evidence of harm,’ ” she said, “does not equate to no harm having occurred. The truth is that we have not adequately looked or we just refuse to see.”
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HAVING FOUND ONE ANOTHER, the parents who wanted thimerosal investigated—and someone made to pay for the harm they believed it caused—followed the path blazed by earlier generations of autism parents: they organized. In 2000, the group that had taken shape around Lyn Redwood formed a nonprofit called SafeMinds. Its founding members organized with sophistication, reflecting some of the leading activists’ professional experience in law, health care, public relations, and management consulting. They were fluent in the use of the Internet, which was just then coming into its own as a vehicle for organizing and advocacy. And they were determined to arm themselves with arguments and data that would sell their message to a wider world.
Like other groups of parents before them, they immersed themselves in scientific literature, to where they could hold their own—up to a point—when challenging the pronouncements of established scientists with whom they disagreed. One group even produced a research-based paper laying out their hypothesis that autism was, as the paper’s title put it, “A Novel Form of Mercury Poisoning.” Deep with footnotes and tables of data, it nevertheless found no takers for publication, until it was accepted by a Scottish journal called Medical Hypotheses. That was not, however, the sort of ringing endorsement of their seriousness that the parents hoped for, since the journal’s self-proclaimed mission was publication of “hypotheses where experimental support is yet fragmentary.”
That revealed what would always be the vaccine activists’ Achilles’ heel—the lack of convincing scientific support for an unproven hypothesis that its adherents embraced as a given. Reversing the standard and time-honored traditions of science, they started with the conclusion that vaccines had hurt their children, and then went looking for the evidence that would prove them right. This was made explicit in a statement that appeared on the SafeMinds website in 2001, asserting that research “is expected to prove that thimerosal is a cause of autism.” This mind-set was to the group’s detriment, creating the impression for many that they were naïve about the ways of science. They readily embraced the full range of alternative therapies, with chelation still an option many employed. Chelation itself had toxic side effects, and even, in rare instances, caused death. Most radically of all, a Maryland doctor began injecting boys with Lupron, a drug that inhibits secretion of the so-called sex hormones—estrogen in women, and testosterone in men. Developed to slow the advance of prostate cancer and fibroids, it has also been administered to sex offenders as a form of “chemical castration.” When injecting children with autism, the doctor posited that mercury-induced autism was accompanied and exacerbated by excessive levels of testosterone, which interfered with children’s ability to excrete mercury. While many of the parents using these therapies reported seeing beneficial effects, none of the methods was supported by controlled research, and some were outright refuted by the scientific establishment.
Nevertheless, the mercury parents’ political skills led to a significant win for them in the scientific arena in the second half of 2001. Responding to the fear they had fanned, Congress ordered the US government’s medical think tank, the Institute of Medicine (IOM), to assess the state of the available research on thimerosal and autism. Several of the parents testified before the IOM commission assigned to the task. On October 1, the IOM panel issued its finding that “evidence to accept or reject” the parents’ hypothesis of a causal relationship between thimerosal and autism was “inadequate.” Moreover, the task force took the view that, pending further evidence to confirm or refute it, “the hypothesized relationship is biologically plausible.”
To the parent-activists, this was a major win: validation from the top that their claim was not just some far-fetched fantasy. Encouraged, emboldened, they pressed forward with their case, evoking the autism parents of earlier generations in the sheer intensity of their efforts. In doing so, the mothers and fathers operating in this first half of the first decade of the new millennium had two huge advantages over their predecessors. One was the Internet, where a core group of users could log up to thousands of postings, leading to a sense of support and solidarity, if not an exaggerated sense of strength in numbers.
Their other advantage was the complete upending of the power balance between professionals and “consumers,” which had occurred in the forty years since autism activism had been born. Gone was the habitual deference to expertise once expected of lay members of the public. Suspicion of authority, and the impulse to challenge it, had become familiar practice. The Mercury Moms never doubted their right to get in to see the top vaccine people at the FDA, the NIH, or the CDC. The officials at these agencies must have believed in this entitlement too, or at least found it politically wise, because they granted the parents the meetings. Parents were invited to question officials in open sessions and to present testimony at scientific hearings.
Once timid, almost “hat in hand” in their dealings with the expert class, autism parents of the 2000s assumed the right to hold the medical authorities’ feet to the fire. One mother, who later was a guest on NBC’s Today show, boasted in an online posting about joining fellow parents in disrupting a meeting at the NIH, where they had all been invited to be updated by some of the nation’s leading autism researchers on their latest work. Irritated when the presenters began discussing studies that had nothing to do with “their” issues—vaccines, gastrointestinal issues, or food allergies—people in the audience began interrupting, grabbing the floor microphone, and hollering “We are not stupid!” and “Why are you wasting our time?” and “Listen to me: WE ARE NO LONGER SUSCEPTIBLE TO YOUR PROPAGANDA!” At one point, the mother who wrote the account tried to launch a mid-meeting boycott. “If the NIH is going to continue wasting our time,” she declared, “then I am going to go have lunch.” A section of the audience rose to follow her. Though she did not follow through, and later said she regretted behaving this way because it was “non-productive,” she admitted that “to publicly humiliate those in power felt good.”
So far had the pendulum swung that, at times, the bureaucrats in charge of the nation’s public health came across as—if not humiliated—then thoroughly cowed by the fury of those who believed in the thimerosal link. Under powers Congress granted the people in the 1970s, the parents could now get
copies of government scientists’ internal emails, memos, and transcripts of meetings, which they perused for signs of a government cover-up of mercury’s risks. One such transcript, fed to environmental lawyer Robert Kennedy Jr., was used by Kennedy in a 2005 Rolling Stone article called “Deadly Immunity,” where he charged that the government and vaccine manufacturers had colluded “to hide the risks of thimerosal.” He called it “a chilling case study of institutional arrogance, power and greed.” Following the article’s publication, the Senate launched a formal investigation into possible improprieties by government scientific officials, including financial conflicts of interest, where members of the nation’s vaccine policy leadership were treated like defendants.
The year 2005 saw another landmark for the mercury theory. It was the year a writer named David Kirby published a potboiler-style account of the Mercury Moms’ campaign called Evidence of Harm. Kirby adopted the posture of an impartial journalist, asserting that “there are two sides to every good story, and this one is no exception.” But with Lyn Redwood as a leading player in the narrative, and one of its major sources, the book’s sympathies were tilted unabashedly toward the activist parents who, Kirby wrote, “never abandoned their ambition to prove that mercury in vaccines is what pushed their children, most of them boys, into a hellish, lost world of autism.”
For stoking fear and increasing awareness of autism, Kirby’s book was unprecedented in its power. He was indefatigable in promoting it, appearing everywhere from the Montel Williams Show to NBC’s Meet the Press. He gave talks all over the United States and was a frequent guest on a popular radio show whose host, Don Imus, was a complete believer in the thimerosal connection. The “Evidence of Harm” Yahoo! group drew first hundreds and then thousands of postings each month, taking over as the primary online meeting point of the mercury theorists.