WHO DECIDES WHICH FACTS ARE TRUE?
In 1998 Andrew Wakefield, a British gastroenterologist with a history of self-promotion, published a paper with a shocking allegation: the measles-mumps-rubella vaccine might cause autism. The media seized hold of the story and, in the process, helped to launch one of the most devastating health scares ever. In the years to come Wakefield would be revealed as a profiteer in league with class-action lawyers, and he would eventually lose his medical license. Meanwhile one study after another failed to find any link between childhood vaccines and autism.
Yet the myth that vaccines somehow cause developmental disorders lives on. Despite the lack of corroborating evidence, it has been popularized by media personalities such as Oprah Winfrey and Jenny McCarthy and legitimized by journalists who claim that they are just being fair to “both sides” of an issue about which there is little debate. Meanwhile millions of dollars have been diverted from potential breakthroughs in autism research, families have spent their savings on ineffective “miracle cures,” and declining vaccination rates have led to outbreaks of deadly illnesses like Hib, measles, and whooping cough. Most tragic of all is the increasing number of children dying from vaccine-preventable diseases.
In The Panic Virus Seth Mnookin draws on interviews with parents, public-health advocates, scientists, and anti-vaccine activists to tackle a fundamental question: How do we decide what the truth is? The fascinating answer helps explain everything from the persistence of conspiracy theories about 9/11 to the appeal of talk-show hosts who demand that President Obama “prove” he was born in America.
The Panic Virus is a riveting and sometimes heart-breaking medical detective story that explores the limits of rational thought. It is the ultimate cautionary tale for our time.
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Seth Mnookin is a contributing editor at Vanity Fair and a former senior writer for Newsweek, where he covered media, politics, and popular culture. His writing has appeared in The Washington Post, New York magazine, and many other publications. He is the author of The Panic Virus: A True Story of Medicine, Science, and Fear; Feeding the Monster: How Money, Smarts, and Nerve Took a Team to the Top and Hard News: The Scandals at The New York Times and Their Meaning for American Media. He lives in Brooklyn, New York.
INTRODUCTION
On April 22, 2006, Kelly Lacek looked around her dinner table and smiled: Dan, her husband of thirteen years, was there, along with the couple’s three children, Ashley, Stephen, and Matthew. Kelly’s parents had also come over: There was a father-daughter dance at the local church that evening, and Kelly and her dad were double-dating with Dan and Ashley. As the four of them were getting ready to leave, Kelly couldn’t resist needling her mother. “You’re stuck with the boys,” she said. “But don’t worry—we won’t be out too late.” She kissed Stephen goodbye, and then bent down to say good night to Matthew. He was three years old, and Kelly marveled at how quickly he was growing up: It seemed as if it was only moments ago that he’d been an infant, and now he was already being toilet-trained. (Dan and Kelly both agreed that it was adorable how proudly he announced that he had to go to the bathroom.)
For a brief moment, Kelly says, she wondered if Matthew was okay—he seemed a little out of sorts, and earlier that afternoon, he’d complained of a sore throat—but then she figured he’d probably just tired himself out wrestling with his older brother.
Kelly and Dan returned home that night around eight o’clock. They’d barely walked in the door when Kelly’s mother rushed over: “It’s Matthew,” she said. “He’s running a fever—and his breathing seems a little shallow.” The Laceks realized right away that something was seriously wrong. “He was just sort of hunched over,” Kelly says. “We didn’t know what to do.” Since there was no way to get in touch with Matthew’s doctor, they decided to make the ten-minute drive from their home in Monroeville, about fifteen miles east of Pittsburgh, to the Forbes Regional Campus of the Western Pennsylvania Hospital.
When the Laceks arrived at the emergency room, the attending physician told them there was nothing to worry about. In all likelihood, he said, Matthew had a case of strep throat. Worst-case scenario, it was asthma; regardless, they’d be home in no time. Two hours later, they were feeling much less assured: Matthew’s fever was still rising, and when a doctor tried to swab his throat, he began to choke. By eleven p.m. Matthew’s temperature had risen to 104 degrees and his breathing seemed to be growing shallower by the minute.
It was around that time that a doctor the Laceks hadn’t met before walked over. He was older—probably in his sixties, Kelly thought—and as soon as he saw Matthew, he began to suck nervously on his teeth. He turned to the Laceks: Had Matthew received all his shots? Actually, Kelly said, he hadn’t. Matthew had been born in March 2003, several years after rumors of a connection between autism and vaccines had begun to gain traction in suburban enclaves around the country. That May, Kelly’s chiropractor warned her about the dangers of vaccines. “He asked if we were going to get [Matthew] vaccinated and I said yes,” Kelly says. “And then he told me about mercury. He said, ‘There’s mercury in there.’ ” Kelly had already heard rumors that the combined measles-mumps-rubella (MMR) vaccine was dangerous, but this was something new. “He was really vocal about it causing autism. He said there was this big report over in Europe and blah blah blah. And I thought, Well, I’m surrounded by people who have autistic children. What if this happened to Matthew?” If Kelly was unconvinced, the chiropractor said, she should make Matthew’s pediatrician prove to her that the vaccines Matthew was scheduled to receive were one hundred percent safe.
“So that’s what I did,” Kelly says. “I asked my doctor if she could give me a label that says there’s no mercury and she said, ‘No.’ She said she wouldn’t give it to me.” It was as if, Kelly says, her pediatrician was hiding something. The doctor tried to tell Kelly that she would be putting Matthew at serious risk by not immunizing him, but, Kelly says, “I don’t think I heard anything else she might have said, quite honestly. At that point I had lost faith.”
From that day forward, Matthew didn’t receive any of his scheduled vaccinations, including one for a bacterial disease called Haemophilus influenzae type b, or Hib. Oftentimes, a Hib infection is not particularly threatening—if the germs stay in the nose and throat, it’s likely the child won’t get sick at all—but if the infection travels into the lungs or the bloodstream, it can result in hearing loss or permanent brain damage. Hib can also cause severe swelling in the throat due to a condition called epiglottitis, which, if not treated immediately, results in infected tissue slowly sealing off the victim’s windpipe until he suffocates to death. As recently as the 1970s, tens of thousands of children in America had severe Hib infections each year. Many of those suffered from bacterial meningitis, and between five hundred and one thousand died. After the Hib vaccine was put into widespread use, the disease all but disappeared in the United States: In 1980, approximately 1 in 1,000 children caught Hib; today, fewer than 1 in 100,000 do. In fact, the immunization had been so effective that out of everyone working in the Monroeville ER, the doctor who’d asked Kelly Lacek about her son’s vaccine history was the only one who had been practicing long enough to have seen an actual Hib infection in a child.
Until that night, Kelly had never given much thought to the potential repercussions of her decision not to have Matthew vaccinated. “I must have read somewhere that after he turned three, he would have been okay for many of those diseases,” she says. “I thought he was in the clear.” She was wrong. “I have never seen a doctor panic so quickly,” she says. If, as the doctor was all but certain was the case, Matthew had been infected, then everything that had been done to him in the hospital that night—the examinations, the swabs, the breathing treatments—had served only to further inflame his throat. It wasn’t until Kelly saw her son’s X-rays that she realized just how dire the situation was: It looked as if Matthew had a thumb lodged in his throat. “I started to shake,” Kelly says. “There was just a tiny bit of airway left for him to breathe.”
Within minutes, the entire emergency room was thrown into a frenzy. Kelly heard someone shout out, “Page Children’s!” Then she heard a second command: “Get Life Flight here right away.” Finally, a doctor pulled the Laceks aside and explained the situation to them. “If we don’t get Matthew on a helicopter [to the Children’s Hospital in Pittsburgh] right now, your son is probably going to die,” he said. “It could be within minutes.” While they were waiting, the doctor said, Kelly had to make sure Matthew remained calm. “I do not want you crying,” the doctor said. “I do not want you reacting to anything. If you are upset, Matthew will be upset, and that will make his throat close up more. If that happens he will suffocate.” As if in a daze, Kelly went and picked up her son. It wasn’t until she heard her teeth chattering that she realized she was shaking. She focused all her energy on trying to remain still.
While Kelly was holding Matthew, Dan Lacek was conferring with the hospital staff. It had rained earlier in the evening, and now the entire area was covered in fog, which made it too dangerous to land a helicopter. Matthew was going to have to make the trip to Pittsburgh in an ambulance—but before he could be moved, he’d have to be intubated. If that didn’t work—if there was not enough room in Matthew’s throat for a breathing tube—the doctors would try to perform a tracheotomy, which involves cutting into the windpipe in an effort to form an alternate pathway for air to get into the lungs. (The procedure is not without risk: The physicist Stephen Hawking lost his speech when the nerves that control the vocal cords were damaged during an emergency tracheotomy.) Once again, it fell to Kelly to keep her son calm. Fortunately, the tube slid down Matthew’s throat. Unless it closed up so much that the tube was forced out, they’d bought themselves a few more hours.
It was almost four in the morning when the Laceks arrived in Pittsburgh. Matthew was immediately placed in a medically induced coma. All the doctors could promise was that he’d live through the night. “They said something about not catching it quickly enough with the antibiotics,” Kelly says. “Even if he did recover, there was a good chance he would have permanent brain damage, or, best-case scenario, he would have hearing loss.”
For forty-eight hours, Dan and Kelly Lacek’s son remained in stable condition. “You’re in shock,” Kelly says. “You never let your guard down. You’re just so focused on him getting better.” Then, on Tuesday, just as they were growing more hopeful, Matthew’s blood pressure plummeted. The only thing the Laceks could think to do at that point was to ask their friends to pray for them.
When Kelly Lacek’s chiropractor told her that vaccines had been linked to autism, he was repeating the most recent of hundreds of years’ worth of fears about vaccinations. The roots of this latest alarm dated back to 1998, when a British gastroenterologist named Andrew Wakefield claimed to have discovered a new gut disorder associated with the MMR vaccine—and with autism. Wakefield based his conclusions on a case study of a dozen children who’d been brought to his clinic at the Royal Free Hospital in London. Almost immediately, Wakefield’s research methods and his interpretations, which had been published in the medical journal The Lancet, came under fire. Wakefield’s response was to appeal to the public rather than to his colleagues: The medical establishment was so determined to discredit him, he said, because he threatened their hegemony by taking parents’ concerns seriously. The media took the bait, and despite Wakefield’s lack of proof and his track record of dubious assertions and unverified lab results, they began churning out stories about how a maverick doctor was trying to protect innocent children from corrupt politicians and a rapacious pharmaceutical industry. Within months, vaccination rates across Western Europe began to fall.
Then, a year later, the Centers for Disease Control and Prevention (CDC) and the American Academy of Pediatrics (AAP) publicly recommended the removal of a widely used mercury-based preservative called thimerosal from childhood shots. The move had been hotly debated; in the end, one of the factors that had tipped the balance was a concern that following the Wakefield brouhaha, any connection, real or rumored, between vaccines and neurodevelopmental disorders had a chance of unraveling public confidence in vaccines.
That fear proved to be well founded, in no small part because of the growing hold autism had on the public’s consciousness. In the half-century since “infantile autism” had been defined as a discrete medical condition, it had gone from being a source of shame for parents, who were blamed for their children’s conditions, to becoming a seemingly omnipresent concern, especially among those well-educated, upper-middle-class families for whom child rearing had become an all-encompassing obsession.
In spite of this increased attention, researchers in the 1990s were barely any closer to understanding autism’s origins or devising effective therapies for its treatment than their predecessors had been fifty years earlier. For parents of autistic children, this lack of reliable information resulted in feelings of hopelessness and frustration; for parents in general trying to determine the best course of action for the future, it fueled a sense that medical experts and health authorities couldn’t be counted on to look out for their families’ well-being.
Together, these reactions prepared the ground for new hypotheses to take root, regardless of how speculative or scientifically dubious they were. In the year following the CDC/AAP recommendations regarding thimerosal, a small group of parents decided that some of the symptoms of mercury poisoning seemed to match the behavior they saw in their autistic children—and they suddenly realized that their children had appeared to be fine before they’d received their vaccines. These parents began posting their observations online, sparking hundreds more parents to confirm that they’d noticed the exact same thing. With a network of nontraditional doctors and alternative health practitioners urging them on, they became more and more convinced that the common threads that ran through their stories were too odd and too widespread to be mere happenstance.
The more these newly politicized parents learned, the more outraged they became. Why were children with weak immune systems injected with vaccines just as potent as those used on children in perfect health? Why was everyone instructed to receive the same number of inoculations, regardless of their medical histories or family backgrounds? Why, for that matter, were more and more shots being added all the time? Was a chicken pox vaccine really necessary? Or one for the flu?
Just as had been the case with the MMR vaccine, there was no concrete evidence linking thimerosal to autism, and the anecdotal corroboration often seemed more impressive than it actually was. (To take but one example: Despite superficial similarities, the motor difficulties exhibited by people with mercury poisoning bear little resemblance to the repetitive movements typical of autistics.) That didn’t stop the American media from reacting much the same way their colleagues across the Atlantic had when Andrew Wakefield had published his assertions, as the emotional pull of stories featuring sick children and devoted parents outstripped anything as boring as hard data or the precautionary principle. In a matter of months, an ad hoc coalition of “Mercury Moms” transformed itself into a potent political force: Senators spoke at their rallies, public health officials tried to assuage their concerns, and federal agencies included them in discussions on how to spend tens of millions of dollars. Soon, vaccination rates began to fall in the United States as well.
By the beginning of the new millennium, Wakefield’s supporters and the proponents of the thimerosal link had joined forces to create an international cadre of vaccine skeptics whose message had an undeniable appeal: Parents trying to do nothing so much as raise their children had been taken advantage of by a society they had trusted—and now they were determined to make it right.
· · ·
Over the past two decades, the instant accessibility of information has dramatically reshaped our relationship to the world of knowledge. Five hundred years after Gutenberg’s introduction of the printing press and Martin Luther’s translation of the Bible let common people bypass the priestly class, the vernacular of twenty-four-hour news channels and Internet search engines is freeing us to take on tasks that we’d long assumed were limited to those with specialized training. Why, after all, should we pay commissions to real estate brokers or stock analysts when we can find online everything we need to sell our houses or manage our investments? And why should we blindly follow doctors when we can diagnose our own ailments?
One of the first effects of this hyper-democratization of data was to unmoor information from the context required to understand it. On the Internet, facts float about freely and are recombined more according to the preferences of intuition than the rules of cognition: Mercury is toxic, toxins can cause development disorders, mercury is in vaccines; ergo, vaccines cause autism. Combined with the self-reinforcing nature of online communities and a content-starved, cash-poor journalistic culture that gravitates toward neat narratives at the expe...
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