Deadly Choices: How the Anti-Vaccine Movement Threatens Us All - Paul A. Offit (2010)

Chapter 1. The Birth of Fear

If you say in the first chapter that there is a rifle hanging on the wall, in the second or third chapter it absolutely must go off.

S. SHCHUKIN, MEMOIRS (1911)

Frederick Wiseman was born on January 1, 1930. After graduating from Williams College and Yale University Law School, Wiseman became a law professor at Boston University. Then he decided to make movies. For the next thirty years Frederick Wiseman was the most inventive, most reviled, most controversial, and most influential documentary filmmaker in America.

Wiseman’s first film—released in 1967—was his most powerful. Called Titicut Follies, it was a stark depiction of life inside the walls of Bridgewater State Hospital for the Criminally Insane. Wiseman showed prisoners being hosed down, force-fed, and tortured by an indifferent, bullying staff. In one scene, a physician takes a long tube and inserts it into a prisoner’s nose. Then he attaches the tube to a funnel, fills it with thick, dark fluid, and stands precariously on a chair, a cigarette dangling from his mouth. A guard mockingly shouts, “Chew your food, Joey.” The viewer is at once sickened by the degradation of force-feeding and captivated by the cigarette ash dangling over the funnel.

Time magazine called Titicut Follies a “relentless exposé of a present-day snake pit.” Vincent Canby of the New York Times wrote that the film made “Marat/Sade look like Holiday on Ice.” And one theatrical poster warned, “Don’t turn your back on this film ... if you value your mind or your life.” Titicut Follies was so hard to watch—so unblinking, so unsettling, so unfailingly detailed—that days before its debut at the New York Film Festival, Massachusetts Superior Court judge Harry Kalus ordered the state to seize all copies, writing: “No amount of rhetoric, no shibboleths of ‘free speech’ and the ‘right of the public to know’ can obscure or masquerade this pictorial performance for what it really is—a piece of abject commercialism, trafficking in the loneliness, on the human misery, degradation and sordidness in the lives of these unfortunate humans.” In 1968, Titicut Follies was the first and only film in the United States ever to be banned for reasons other than obscenity or national security. Twenty years would pass before the movie was shown to the American public.

The modern American anti-vaccine movement was born on April 19, 1982, when WRC-TV, a local NBC affiliate in Washington, D.C., aired a one-hour documentary titled DPT: Vaccine Roulette. Although Frederick Wiseman wasn’t involved in a single aspect of the film, his influence on the writer and producer, Lea Thompson, was apparent. Vaccine Roulette contained the sad, haunting images of Titicut Follies, except that this time, instead of inmates degraded by prison guards, the camera focused on children—twisted, withered, disabled children—irreparably damaged by a vaccine. (Although Lea Thompson referred to the vaccine as DPT, doctors called it DTP because the vial read “diphtheria and tetanus toxoids and pertussis vaccine.”)

Vaccine Roulette opens with Lea Thompson standing in the middle of a newsroom, staring straight into the camera. Her tone is grim, her voice unwavering. “DPT,” she begins, “the initials stand for diphtheria, pertussis, tetanus: three diseases against which every child is vaccinated. For more than a year we have been investigating ‘P’: the pertussis portion of the vaccine. What we have found are serious questions about the safety and effectiveness of the shot. The overriding policy of the medical establishment has been to ag-gressively promote the use of the vaccine, but it has been anything but aggressive in dealing with the consequences. Our job in the next hour is to provide enough information so that there can be an informed discussion about this important subject. It affects every single family in America.”

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DPT: Vaccine Roulette, which aired on April 19, 1982, ignited America’s modern anti-vaccine movement. (Courtesy of WRC-TV/NBC News.)

The next image is that of a baby screaming: a needle jabbed into her arm. “It’s a fact of life,” says Thompson. “All children must get four DPT shots to go to school. Shots we are told will keep our children healthy. Shots we are told will protect every child from a dreaded disease: pertussis. But the DPT shot can also damage to a devastating degree.” To the sound of a beating heart, the screen fills with images of children with severe mental and physical handicaps, withered arms and legs, gazing at the ceiling, drooling, seizing. Then a vial of vaccine appears behind letters spelling out “D-P-T: V-a-c-c-i-n-e R-o-u-l-e-t-t-e,” each letter accompanied by a sharp, penetrating noise, like gunshots.

“The controversy isn’t really over the fact that [brain damage] happens,” says Thompson, “but how often it happens and whether it happens often enough to deem the vaccine more dangerous than the disease itself. You don’t have to ask the Grants of Beaver Dam, Wisconsin, that question.” The next scene features a young man with emaciated, spastic legs, rhythmically shaking his head back and forth. A graphic describes his problem: “SCOTT GRANT, AGE 21, REACTION: HARSH CRY, INFANTILE SPASMS, SEVERELY DISABLED, RETARDED.” Scott’s mother, Marge, explains what happened to her son: “We had a child up to four months of age that was developing beautifully well. The doctor explained that he was giving Scott his first DPT shot. Between 12 and 14 hours [later], he gave an outburst of a very hard cry. What we learned later were infantile spasms [a form of epilepsy]. I went home and cried. Jim cried. We couldn’t believe that we could possibly have such a black future.”

“I had to start a business for myself,” said Jim Grant. “I had to be home all the time in regards to helping lift him and take care of his many needs. It’s quite a big job. We have not had a vacation for twenty-one years. We simply can’t go away. It’s impossible to go away.”

Other brain-damaged children appear—all staring blankly, all clearly struggling, all allegedly harmed by the pertussis vaccine:

“POLLY GAUGERT, AGE 7, REACTION: FEVER, UNCONTROLLED SEIZURES, BRAIN DAMAGE.” “I said that maybe she should not have this shot because it seems to me she was not quite herself,” recalled Polly’s mother. “And [the doctor] checked her all over and he said, ‘She looks okay to me,’ and then he gave her the shot. And the next morning when I was feeding her she went into a grand mal seizure.... I didn’t know what was happening. I thought she was dying in my arms.”

“ABRA YANKOVICH, AGE 2, REACTION: STOPPED BREATHING, SEIZURES, SEVERELY DISABLED, RETARDED.” “When she was four months old, on the same day that she had her vaccination, she had her first seizure,” said Abra’s mother. “She was shaking and she was turning blue and she appeared to have breathing problems. By the time we got her to the emergency room she was okay. And we told her doctor that she had had her vaccination that day. Could there be a link? He said no, she was probably just choking. Just take her home and she’ll be fine. But two weeks later she went into a grand mal seizure. She was very near dying.” The Yankoviches visited a pediatric neurologist in Chicago where they learned Abra’s fate: “We’ve been told that she probably will never walk on her own and she probably will never talk.”

“ANTHONY RESCINITI, AGE 19, REACTION: PERSISTENT CRY, FEVER, SEIZURES, SEVERELY DISABLED, RETARDED.” “Tony Resciniti, 19 years old: he suffers a convulsion about once a day,” says Thompson. “The drugs to control [the convulsions] cost $1,200 a year. Tony convulsed within twenty-four hours of getting the DPT shot.” Tony wasn’t the only one in his family to suffer from DTP.

“LEO RESCINITI, AGE 17, REACTION: FEVER, CONVULSIONS, SEVERELY DISABLED, RETARDED.” Thompson: “Leo Resciniti, seventeen years old: only a few hours after his first DPT shot, Leo, too, went into convulsions. His temperature soared.”

“KELLI HOLCOMB, AGE 8, REACTION: PERSISTENT CRY, STIFFNESS, SPASTIC QUADRIPLEGIC, BRAIN DAMAGE.” “Kelli Holcomb got her shots from the U.S. Army,” says Thompson. “Her parents were told nothing of the risks of the DPT vaccine.”

Doctors also weigh in. Robert Mendelsohn, a pediatrician from Chicago, says, “It’s probably the poorest and most dangerous vaccine that we now have, [and] the dangers are far greater than any doctors have been willing to admit.” Gordon Stewart, an epidemiologist from Scotland, says, “I believe that the risk of damage from the vaccine is now greater than the risk of damage from the disease.” Jerome Murphy, a pediatric neurologist from Milwaukee, says, “There is overwhelming data that there is an association. I know it has influenced many pediatric neurologists not to have their children immunized with pertussis.” One father recalls, “Dr. Millichap told us ... personally, he wouldn’t even give that [vaccine] to his dog.”

Then Thompson reveals something even more disturbing: doctors had known about the horrors of pertussis vaccine for decades. “Medical knowledge about severe reactions to the whooping cough vaccine goes all the way back to the early ‘30s,” she says. “The Pediatric Red Book, written by the American Academy of Pediatrics, lists high fever, collapse, shock-like collapse, inconsolable crying, convulsions, and brain damage as reactions to the DPT vaccine. Those complications are associated with varying degrees of retardation, ranging from severe brain damage, like Scott, to learning disabilities.”

Thompson ends her show on an ominous note. A young boy, having just received a vaccine, is screaming. Terrified, he reaches for his father who tries to reassure him: “It’s all right. It’s one of those things that little boys have to have. See, it’s all gone already.” The sound of a heartbeat grows louder. The little boy looks straight into the camera, worry creasing his face. It’s as if he knows that the shot isn’t “all gone”—that future horrors await him.

Vaccine Roulette aired two more times in Washington, D.C., and nationally on The Today Show; within weeks, magazines and newspapers across the country told the stories of children permanently damaged by the pertussis vaccine.

Physicians were stricken. Leonard Rome, a pediatrician in Shaker Heights, Ohio, said the program was “devastating in every pediatrician’s office. Doctors were calling each other and saying, ‘Are you still giving the pertussis [vaccine]?’” In New Mexico, Dr. James Waltner said, “Inquiries about the vaccine have increased 25 percent.” And on the West Coast, Robert Meechan, a professor of pediatrics at the Oregon Health Sciences University in Portland, said, “We have had a lot more explaining to do.” Thousands of parents called their doctors to reject the pertussis vaccine or to report a laundry list of side effects. Many questioned all vaccines; and some, the integrity of those who gave them.

Vaccine Roulette started a firestorm. “The WRC-TV switchboard was melting from all of the calls coming in,” recalled the CDC’s Alan Hinman. During the furor, several parents got together and decided to do something about it—to take control of a situation that appeared out of control. The organization they formed would forever change how American parents thought about vaccines.

Kathi Williams was twenty-seven years old when she watched Vaccine Roulette in her one-bedroom apartment in Fairfax, Virginia. “I had taken my son into the doctor’s office for his fourth DPT shot,” she recalled. “I was a very well-educated parent. I’d read every book on childcare, childbirth, nursing; whatever book was out there I read. [But] there was never one word about vaccinations and vaccine problems. So I was horrified when I saw this show because four days prior to that my very happy, healthy, beautiful bouncy boy, who never cried, screamed his head off for over eight hours. It was a high-pitched, uncontrollable scream. In between the periods of the high-pitched crying he would fall into a very deep sleep. And then he would just wake up again like someone had pinched him and start this screaming again. My doctor told me that it was normal.” Williams asked her mother what she should do. “She said, ‘Call Lea Thompson.’”

Jeff Schwartz and his wife Donna Middlehurst watched the show from their home in Silver Spring, Maryland. Schwartz was an environmental lawyer and Middlehurst a securities lawyer. Their daughter, Julie, had received her third DTP shot in July 1981, nine months before Vaccine Roulette aired. On the afternoon of her shot, Jeff was holding his daughter when he noticed “a sort of startle.” The startle turned into a seizure that lasted forty minutes. Other seizures followed; when they were finally under control, Schwartz posed a question: “We asked the doctor about the DTP. And she said, ‘No, it’s actually fevers that produce these things.’” But after watching Vaccine Roulette, Schwartz and Middlehurst knew differently. “We said, ‘Oh my God. Now we know what happened.’” On March 25, 1984, Julie Schwartz died during a seizure. Later, Jeff lamented the irony of the DTP vaccine: “To take your daughter in to protect her and have that be the agent that destroys her.”

Barbara Loe Fisher was thirty-four years old when she watched a rebroadcast of Vaccine Roulette the day after it first aired. Fisher was the mother of a four-year-old son, Christian. She remembered what happened the night after he received his fourth DTP shot: “Several hours after we got home, I realized how quiet it was in the house and went upstairs to look for Chris. I walked into his bedroom to find him sitting in a rocking chair staring straight ahead, as if he couldn’t see me standing in the doorway. His face was white and his lips were slightly blue. When I called out his name, his eyelids fluttered; his eyes rolled back in his head; and his head fell to his shoulder. It was as if he had suddenly fallen asleep sitting up. When I picked him up and carried him to his bed, he was like a dead weight in my arms. In the following days and weeks, Chris deteriorated. He no longer knew his alphabet or numbers, and he couldn’t identify the cards he once knew so well. He couldn’t concentrate for more than a few seconds at a time. My little boy, once so happy-go-lucky, no longer smiled.” Fisher called WRC-TV and was given the name of Kathi Williams. Then she drove to Williams’s house and, in 1982, started an organization that has lasted for three decades. They called themselves Dissatisfied Parents Together (DPT).

A few years after Kathi Williams, Jeff Schwartz, and Barbara Loe Fisher formed Dissatisfied Parents Together, Fisher became its president. Well suited to the role of public spokesperson, Fisher had received a degree in English from the University of Maryland, served as an editor for the New York Life Insurance Company in New York City, and coordinated media relations for the Alexandria, Virginia, tourist council.

Fisher’s anger was white-hot and rarely contained. She simply couldn’t stand that children were forced to get vaccines—forced by a government that licensed, recommended, and mandated them; forced by public health officials who were asleep at the switch and, worse, didn’t seem to care; and forced by pharmaceutical companies with little interest in making vaccines safer. Barbara Loe Fisher’s anger at a medical establishment that had required her to vaccinate her son never subsided. By the early 1990s, Dissatisfied Parents Together had changed its name to the National Vaccine Information Center, the single most powerful anti-vaccine organization in America. For the next three decades, Fisher would use that anger to try to convince a generation of American parents that vaccines were far more dangerous than they’d realized.

On May 7, 1982, Senator Paula Hawkins, a Republican from Florida, called a hearing before the Committee on Labor and Human Resources of the U.S. Senate. Only eighteen days had elapsed since the airing of Vaccine Roulette. The speed of the Hawkins hearing was the result of a series of chance events. Lea Thompson had first become interested in pertussis vaccine after she’d been contacted by the parents of Tony and Leo Resciniti, the teenagers from New York who had apparently suffered permanent brain damage. The Rescinitis, as it turned out, were cousins of Dan Mica, a Republican congressman from Florida. On April 28, 1982, nine days before the Hawkins hearing, Kathi Williams, Jeff Schwartz, Barbara Loe Fisher, and several other parents met to discuss strategy at Dan Mica’s office in Washington, D.C. Mica’s brother, John, was on Paula Hawkins’s staff.

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Paula Hawkins, a Republican senator from Florida, chaired a congressional hearing to evaluate possible brain damage caused by pertussis vaccine. (Courtesy of Paul Hosefros/ New York Times.)

Hawkins opened her hearing with a statement. “The immunization program is now threatened on another front,” she warned: “the fear of adverse health events resulting from immunization. To combat this fear and to achieve and maintain high immunization rates, full public communication and health education is essential. The general public has a right to be given information about vaccines—even in areas of scientific or medical uncertainty.” Hawkins then made an ominous and all-too-accurate prediction of future events. “It would be tragic if efforts to eliminate or control communicable disease were to become hampered because the public’s confidence was so eroded as to cause frightened segments of the population to oppose and reject vaccines. Neither can we afford revival of serious childhood epidemics because a complacent and apathetic public, with a diminishing memory, forgets the iron lung.”

One of the first parents to testify was Kathi Williams. On behalf of Dissatisfied Parents Together, she made a list of demands. “Number one: Although several studies have been done, why has the government had a limited research program dealing with adverse effects of vaccines? Number two: Why hasn’t a safer vaccine been developed? Number three: Why haven’t high-risk children been identified? Number four: Why haven’t physicians been required to report adverse reactions to a central recordkeeping agency? Number five: Why haven’t physicians and parents been better informed about the possible reactions to the pertussis vaccine? Number six: Should the states mandate that the present pertussis vaccine be given to all children who attend school? Number seven: Should there be a compensation program for children who have been retarded or seriously disabled by the pertussis vaccine?”

Remarkably, within a few years, almost all of Kathi Williams’s demands would be met.

Pediatricians used the Hawkins hearing as a chance to attack Vaccine Roulette. In a written statement, the American Academy of Pediatrics (AAP) called Thompson’s program “unbalanced,” “biased,” “inaccurate,” and “superficial,” and claimed it “unnecessarily frightened laypersons.” CDC officials complained that Vaccine Roulette had dismissed the seriousness of whooping cough, unfairly characterized doctors and health officials as ignorant of the vaccine’s side effects, and inaccurately claimed that the vaccine didn’t work very well. But despite their criticisms, not a single physician who testified at Hawkins’s hearing disagreed with Lea Thompson’s most damning accusation—that the “P” in the DTP vaccine had caused permanent harm. Edward Mortimer, professor of pediatrics at Case Western Reserve University and probably the most recognized vaccine expert in the United States, said, “Our best estimates are that, of the three and a half million children born annually in the United States, between twenty and thirty-five incur permanent brain damage as a result of the vaccine. Each of us concerned with vaccine recommendations believes that this is twenty to thirty-five kids too many.”

For years doctors had argued that the benefits of the pertussis vaccine outweighed its risks. Now, because of one television program, the public’s perception of those risks was tipping in the other direction. Thousands of parents were choosing not to vaccinate their children.

It was only the beginning.

Lea Thompson’s career was meteoric. After Vaccine Roulette, she worked as a contributing correspondent to NBC’s Today Show and NBC Nightly News with Tom Brokaw, produced and hosted a weekly half-hour magazine called Byline: Lea Thompson, and worked as the chief consumer correspondent at Dateline NBC and MSNBC. For her investigative reporting she won almost every major award in broadcasting, including two Peabody awards, two Polk awards, a Columbia Dupont award, a Loeb award, a National Emmy, the Edward R. Murrow award, multiple National Headliner awards, National Press Club awards, and two dozen Washington Regional Emmys. She was named Washingtonian of the Year in 1989. And her reporting made a difference. As a result of her stories, unsafe toys have been removed from shelves, millions of hairdryers containing asbestos have been recalled, procedures at Sears now ensure that old batteries aren’t sold as new, grocery stores have adopted policies for checking ground beef, warning labels have been placed on Infant Tylenol, and the largest manufacturer of defibrillators in the United States has been shut down. But no story had a greater impact than Vaccine Roulette. If the government hadn’t stepped in several years later, Thompson’s show could have eliminated vaccines from the American marketplace.

Fifteen years later, while receiving an award from the National Vaccine Information Center, the group she had essentially founded, Thompson said, “DPT: Vaccine Roulette stands out as one of the most important stories of my life—maybe the most important story of my life. And I can tell you that I only have one regret—only one. And that’s that we didn’t do this story ten years earlier. That we didn’t know about it ten years earlier. Because so many kids might not have suffered and so many kids might still be alive.”

Thompson’s program created one of the most powerful advocacy groups in American history. But Lea Thompson wasn’t the first investigative journalist to report problems with the pertussis vaccine; and the United States wasn’t the birthplace of the modern-day antivaccine movement. All of these events had already occurred—eight years earlier in England. Indeed, it was the concern of British parents that led to a study that prompted physicians like Jerome Murphy, Gordon Stewart, and Robert Mendelsohn to claim that the pertussis vaccine caused permanent brain damage—a claim that two decades later was found to be wholly and utterly incorrect.