That Burton’s approach to addressing concerns about vaccines and the vaccine industry was overwrought shouldn’t obscure the fact that vaccine manufacturers had not behaved ethically in regards to thimerosal. In 1991, Maurice Hilleman, who was at the time working as an advisor to the pharmaceutical company Merck, warned in a confidential memo that there had not been sufficient safety studies done on thimerosal. Hilleman was a giant in the vaccine world: He developed more vaccines than any other person in history, including those for chickenpox, hepatitis A, hepatitis B, Hib, measles, meningitis, mumps, and pneumonia. In his memo, which was not made public until it was leaked by an unidentified whistle-blower in 2005, Hilleman wrote, “It appears essentially impossible, based on current information, to ascertain whether thimerosal in vaccines constitutes or does not constitute a significant addition to the normal daily input of mercury.” He went on to say that while his own opinion was that thimerosal did not pose any risks, his calculations showed that the amount of ethylmercury children stood to receive from vaccines exceeded several established safety guidelines for methylmercury. Hilleman also pointed out that he was not the first person to have reached this conclusion: The governments of Sweden, Denmark, and Norway had all recently banned the use of thimerosal in vaccines in an effort to protect against a loss of public confidence.
Merck never told health officials about Hilleman’s memo, and somehow the Scandinavian governments’ concerns were not noticed in America. As a result, the chance to forestall both Paul Offit’s and Neal Halsey’s worst fears from being realized was squandered. “If only we had done this in 1992,” Halsey says, “we wouldn’t have faced this problem in 1999.”
30 A good parallel of the difference between ethylmercury and methylmercury is that of ethyl alcohol, or ethanol, and methyl alcohol, or methanol: Two shots of the former give you a buzz; two shots of the latter are lethal.
31 There have been conflicting reports on what Burton sacrificed as part of his reenactment. The pumpkin remains the most referenced victim—in addition to Trillin’s witticism, it prompted a Democratic House of Representatives staffer to show up at a Burton-led hearing wearing a pumpkin suit and a button that read “Don’t shoot”—but watermelons have also been cited. More recently, in June 2009, a Washington Post reporter wrote that a former Burton aide swore the cantaloupe was Burton’s melon of choice. As the Post noted, that may have been the most logical choice, since the cantaloupe “is much closer to the size of a human head than either a watermelon or a pumpkin.”
CHAPTER 11
THE MERCURY MOMS
Lyn Horne and Tommy Redwood met in Birmingham, Alabama, in 1986. She was a thirty-year-old nursing student raising two kids from her first marriage; he was a twenty-nine-year-old medical school student at the University of Mississippi. The couple got married the following year, and after Tommy finished his coursework they moved to a suburb outside Atlanta.
Six years after the Redwoods’ wedding, Lyn learned she was pregnant with her third child. She’s described that moment as the fulfillment of a dream: Finally, her husband would “have a child who would call him dad instead of Tommy.” Will Redwood’s birth was not an easy one—Lyn had to undergo an emergency cesarean section after the doctors realized Will was coming out feet first—but Lyn remembers that first year of Will’s life as a joyous one.
Things began to change shortly after Will turned one. Suddenly, he was constantly sick, and each illness seemed as if it was worse than what had come before. By the time he was a year and a half old, Will had had strep throat, a rarity in children under the age of two; rotavirus, which causes severe diarrhea and in the mid-1990s resulted in the hospitalization of tens of thousands of American children each year; and an upper respiratory infection so serious it required hospitalization. Around the same time, he began acting increasingly withdrawn. By Will’s third birthday, relative strangers had begun hinting to Lyn that her son’s difficulties might be indicative of a learning disorder—perhaps even autism. That, Lyn thought, was ridiculous.
Lyn did acknowledge that, at the very least, Will needed more guidance and attention than he was getting in a regular nursery school class, and in the fall of 1997 he began attending an intensive program for developmentally disabled children. That November, Lyn met with a group of specialists at Will’s school, including classroom instructors, a speech and language pathologist, the director of special education services, and the school’s principal. One of them asked Lyn to describe her goals for Will. “I want him to know his name,” she said. “That is my first goal.” Then she was asked if there was anything else. “By the time he starts kindergarten,” she said, “I want him to be indistinguishable from his peers.” As the journalist David Kirby wrote in a book that Redwood helped to assemble, “Her son did not have an official diagnosis, and she was going to cling to her faith that his dire condition might only be temporary.”
It was not to be. By the time Will started kindergarten, Lyn had accepted that the child who was going to fulfill her and Tommy’s life together was on the autism spectrum. She’d also decided that she was going to do more than dedicate herself to making sure Will received the best care possible. She was going to determine exactly what had happened to her son and figure out what she could do to fix it.
In 1979, four years after they’d met as freshmen at Harvard, Sallie McConnell and Tom Bernard got married and moved to downtown Manhattan. The early 1980s might have been a bleak economic time for the country as a whole, but the future looked bright for the young couple: Tom landed at the powerhouse Wall Street investment bank Salomon Brothers and Sallie found a job as an advertising executive. Before she’d turned thirty, Sallie had struck out on her own and started a market research company based in suburban New Jersey.
In 1987, the Bernards learned their life was about to change forever: Sallie was pregnant with triplets. In preparation, they moved to Summit, a New Jersey suburb whose name reflected the aspirations of its residents. That September, five weeks before her due date, Sallie went into labor. Fred arrived first: He weighed a healthy five pounds, twelve ounces. Jamie was next. He was a full pound less than his brother; still, the doctors predicted he’d need to stay in the hospital for only a couple of extra days.
Bill, however, was a different story altogether. At just barely three pounds, he fell between what’s referred to as Very Low Birth Weight (less than three pounds, four ounces) and Extremely Low Birth Rate (less than two pounds, three ounces). Whatever the official designation, his size put him at risk for a wide range of immediate complications and lifelong health problems. For four weeks after Fred and Jamie were discharged, Bill remained under constant watch at Lenox Hill Hospital’s Neonatal Intensive Care Unit on Manhattan’s Upper East Side.
Almost as soon as Bill arrived home, his parents noticed he lagged behind his brothers in almost every developmental milestone. At first, the differences could be measured in weeks, but over time they became longer and longer. In early 1990, a couple of months after the triplets’ second birthdays, Sallie and Tom scheduled Bill for a full battery of neurological tests. Those tests didn’t lead to a definitive diagnosis; the closest they got was a doctor’s scribbled notation that Bill should be watched for “autistic-like tendencies.” It would take another two years before Bill was determined to have a pervasive developmental disorder, not otherwise specified, which, the Bernards learned, was a fancy medical term for someone on the high-functioning end of the autism spectrum. On the afternoon they got the news, Sallie announced to Tom that she viewed their son’s diagnosis as a positive development: “Now we have something to work with. Now we can form a plan of attack.”
In the coming months, numerous experts told Sallie that autism was genetic, that there was no way to treat it, and that there was virtually no chance of Bill ever recovering. At first, this litany merely frustrated her, but as time went on, it began to make her mad. She was sick of doctors talking down to her and dismissing her out of hand. Maybe, she thought, their a
rrogance was just a way of covering up their own ignorance. The more she thought about it, the more she realized that a lot of what she was being told didn’t make any sense: If autism was a genetic disease, how was it that Fred and Jamie were perfectly fine? And how could genetics explain the fact that there seemed to be more and more children diagnosed with autism every day? When she realized that the number of students in the school Bill attended for developmentally disabled children had tripled in less than two years, Sallie decided it was time she started researching the situation on her own. What she found astonished her.
By the mid-1990s, more than three decades had passed since Bernard Rimland had embarked on his own quest after his son, Mark, began exhibiting signs of autism. The challenges facing Rimland in the early 1960s were significantly different from the ones confronting Bernard and Redwood. Much of that change was due to Rimland himself, whose work at the Autism Research Institute had helped to redefine the disorder and had broken a trail for subsequent generations of DIY parent-researchers. By the time Will Redwood and Bill Bernard were diagnosed as being on the autism spectrum, Rimland’s notion that autism was primarily a neurological condition was almost universally accepted.
That did not mean that Rimland felt his work was finished: Despite his success at changing people’s perceptions of the disease, he remained frustrated that it was not getting the attention of innovative researchers or doctors. Although a few studies had established a putatively genetic basis for the disorder, its ultimate pathology remained a mystery. When parents asked their doctors what they could do to help their children, much of the time they were answered with silence. Once again, Rimland decided it would be easier to create a whole new infrastructure than to try to find a way to work within the mainstream, and in 1995, he launched Defeat Autism Now!, an organization that would collaborate with those medical professionals who were “turning their backs on the medical establishment and using the DAN! approach.”
This time around, Rimland was no longer a solitary voice in the woods. In 1994, Eric and Karen London, a psychiatrist and corporate attorney, respectively, living in Princeton, New Jersey, with their autistic son, had become so frustrated with the lack of resources available to them that they launched the National Alliance for Autism Research (NAAR). Meanwhile, about 120 miles up the coast from Rimland’s San Diego headquarters, Hollywood producer Jonathan Shestack and his wife, television art director Portia Iversen, were starting their own nonprofit, which they called Cure Autism Now (CAN). Like DAN!, CAN and NAAR aimed to be more than traditional advocacy organizations: They wanted to shape the direction and scope of biomedical research on autism spectrum disorders by conceiving of, planning, and funding projects on their own.
Instead of reading through old textbooks and hunting for journal articles as Rimland had done, this second generation of autism advocates used the Internet to access cutting-edge research: Thanks to service providers like America Online and search engines like Alta Vista, information that had previously been available only to the select few was in wide circulation. When she started CAN, Iversen was so inept at using a computer that she had to pay someone to come to her house and help her download files. At the time, the only noteworthy repository for scientific research papers available to laypeople was a collection of medical literature maintained by the National Institutes of Health’s (NIH) National Library of Medicine.32 Then, seemingly overnight, Iversen said, “all these incredible medical databases suddenly became free.” Without any prior experience or knowledge of biology or genetics, the onetime art director had access to enough information to allow her to analyze unstable regions of the human chromosome and compare the human genome to that of fruit flies.
There are some arenas in which the democratic assessment of information makes sense—it’s a good bet that if a new Stephen King book has fifty thousand five-star ratings on Amazon, fans of Cujo and Carrie aren’t going to be disappointed with it—but epidemiology, which uses enormous amounts of data to analyze health and disease on a population-wide level, is not one of them. Determining cause and effect can be difficult even when conducting laboratory research, and epidemiologists don’t have the luxury of setting up controlled experiments with a minimum of variables: They need to factor in the uncontrollable actions and unpredictable behaviors of anywhere from dozens to millions of individuals. It’s no wonder that the ambient statistical noise can prove deafening even to professionals who have spent decades processing information on such a large scale. That’s exponentially truer for lay practitioners untrained in statistical analysis.
One well-known example of the pitfalls of amateur epidemiology occurred on Long Island in the early 1990s. In March 1992, fifty-year-old Lorraine Pace was diagnosed with breast cancer. This came as a shock—not, Pace said, because a cancer diagnosis is always upsetting, but because she thought her healthy lifestyle should have protected her from the disease. Even more alarming to Pace was her sudden awareness of the large number of cancer patients in the area: Eventually, she counted a total of twenty people in her neighborhood in West Islip who’d also been diagnosed with cancer in the past several years alone. This might have been an informal sampling, but it left Pace convinced that an unidentified toxin was stalking her community.
Frustrated with what she saw as a lack of official concern, Pace took matters into her own hands and founded the West Islip Breast Cancer Coalition. Day after day for months, the organization’s members would meet in Pace’s living room to add new data points to a giant, color-coded map: yellow dots for homes with malignant breast tumors, pink for benign tumors, and blue for no tumors at all. After analyzing its data, the group announced that cancer rates in the area were 20 percent higher than the state average.
The media and local politicians alike jumped on the story, much to the dismay of scientists, who knew that epidemiological studies that start with desired outcomes in mind are almost by definition worthless.33 In this case, there were a number of obviously mitigating factors that hadn’t been considered by Pace’s group: West Islip has a high proportion of wealthy, white women with better access to health care than most of the country, which likely meant that slow-growing tumors that would have gone unnoticed in other communities were being identified; West Islip women tended to defer childbearing to later in life, which was known to increase the risk of breast cancer; and the citizens of West Islip tended to live longer than average, and cancer rates climb dramatically with age.
Ultimately, Pace’s crusade spawned a controversy that raged for nearly a decade at a cost to taxpayers of more than $30 million. When, in 2002, an exhaustive federal study found that breast cancer rates in Long Island were in fact barely distinguishable from those in the rest of the country, the news received a fraction of the attention the initial scare had caused. Even if that hadn’t been the case—even if there had been a higher-than-average rate of breast cancer in the area—the most likely explanation would have been that Long Island found itself in a random eddy of disease rather than the victim of a hidden carcinogen.34
If large-scale pattern recognition is hard to practice in your neighborhood, it’s nearly impossible to conduct over the Internet. Even when you know that an online community selects for a certain type of person—say, politically minded liberals or ardent conspiracy theorists—sustained encounters with a small group of like-minded people almost inevitably lead to the conclusion that everyone thinks the way you do. (This phenomenon is addressed in more depth in Chapter 16.) In the summer of 1999, the CDC’s and AAP’s joint statements on thimerosal served as a catalyst for parents like Lyn Redwood who up until that point had not considered that vaccines might have played a role in their children’s conditions. “I started reading about mercury online, and I was awestruck by the symptoms being similar to my son’s,” Redwood says. “They said no testing was necessary and there was no evidence of harm. How could they know that if they hadn’t looked? I felt this huge sense of urgency to share my concerns, and the records I had on my son and
a dozen other children whose stories were exactly the same.” Armed with only the fervency of her beliefs, Redwood started an online mailing list devoted to mercury and autism. “By word of mouth, people heard about it, so I had ten, and then one hundred, and then a thousand, and then four thousand people as part of this list, comparing notes about their children’s development [and] mercury. It in essence created a community and a movement.” Along with Sallie Bernard, one of the most stalwart of her geographically diverse allies was Liz Birt, a Chicago attorney with an autistic son named Matthew. Together, they formed the core of the Mercury Moms, an informal coalition of parents that would influence health policy and vaccination practices around the globe for years to come.
One of the group’s first coups was its courting of a Florida woman named Danielle Sarkine, who was the mother of an autistic son named Christian—and, more importantly, the daughter of Dan Burton. It didn’t take long for Sarkine to agree to pressure her father to hold congressional hearings focusing specifically on thimerosal. She was confident she’d be successful: Burton already believed it was more likely than not that his grandson’s autism was the result of an “injury” he’d suffered after being injected with multiple vaccines at once.
By the time Burton’s House Government Reform Committee began its hearings on thimerosal in the spring of 2000, he had become as committed a partisan as anyone. In his opening remarks, Burton described Christian as a “beautiful and tall” baby who “was outgoing and talkative [and] enjoyed company and going places.” His parents, Burton said, were convinced he was going to star in the NBA—at least, that is, until he got vaccinated. Almost immediately, Burton said, Christian began “banging his head against the wall, screaming and hollering and waving his hands. . . . [H]e had those shots, and our lives changed and his life changed.” Burton also praised the spirit of parents who looked outside mainstream medicine for answers to their children’s conditions.
The Panic Virus Page 15
