Deadly Choices: How the Anti-Vaccine Movement Threatens Us All (8 page)
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Authors: Paul A. Offit M.D.
BOOK: Deadly Choices: How the Anti-Vaccine Movement Threatens Us All
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There were bigger problems. Stuart-Smith was unhappy that Miller’s study, due to political pressure, was published prematurely. “Unfortunately, owing to what Professor Miller described as political though not party-political pressure, the report of the [study] had to be published before the data were complete. As a result, it deals only with the first one thousand of the total of 1,182 cases. More importantly, the data relating to the final outcome were incomplete.” When the data were complete, when the full follow-up was concluded, and when the details of all of the cases were finally revealed, a very different picture emerged.
In his study David Miller maintained that seven children had developed brain damage within a week of receiving DTP. But a closer look showed that these cases weren’t what they were claimed to be. Three of the children had been incorrectly labeled as brain damaged when in fact they were normal both before and after vaccination. Three others had suffered viral infections and one Reye’s Syndrome (a severe neurological problem found later to be caused by aspirin, not vaccines). Miller’s conclusions lay in ruins.
In March 1988, Stuart-Smith delivered his verdict: “On all the evidence, a plaintiff had failed to establish, on a balance of probability, that pertussis vaccine used in the United Kingdom and administered intramuscularly in normal doses could cause permanent brain damage in young children.” David Salisbury, currently director of immunization for England’s Department of Health, remembered the impact of Stuart-Smith’s verdict: “I thought that for a judge who was not a trained epidemiologist it was an extraordinarily insightful analysis of all of the available evidence. The [verdict] clearly gave us much more authority to be clear about the risks of pertussis and the risks of not being vaccinated.”
No other trials against pertussis vaccine would ever appear in a British courtroom. Soon after Judge Stuart-Smith concluded in England that pertussis vaccine didn’t cause permanent brain damage, Judge John Osler made an identical decision in a landmark case in Canada. Osler concluded that while the “post-pertussis theory was popular some years ago,” further study and technology refuted the contention.
Stuart-Smith’s trial had gone a long way toward putting to rest the notion that pertussis vaccine caused epilepsy and mental retardation. But it never addressed the real cause or causes of the problem. That’s because science hadn’t advanced far enough to answer the question of what caused seizures. During the next two decades, that would change. And the answer wouldn’t come from England, where the notion that pertussis vaccine caused brain damage had first gained international attention, or from the United States, where vaccines had almost been eliminated by lawsuits. Rather, it would come from a relatively unknown researcher on the east coast of Australia.
Seizures are more common than most people realize, typically occurring in the first year of life. Indeed, every year as many as one hundred and fifty thousand children in the United States develop seizures caused by fever. Most of these children never have seizures again. However, every year about thirty thousand children, whose first seizure may or may not have been associated with fever, develop epilepsy. When Lea Thompson was putting the pertussis vaccine on trial in the media, or Paula Hawkins in Congress, or Stuart-Smith in a British courtroom, seizure disorders in infants were not very well understood. But, during the next twenty years, neurologists made tremendous strides in sorting out different seizure types based on clinical symptoms, EEG patterns, age of onset, and response to therapies. More important, with the availability of genetic probes, the specific genes that caused many of these epilepsy syndromes were found. As of 2009, the genetics of at least fifteen different epilepsy syndromes had been identified.
It was with this knowledge—and these genetic tools in hand—that Samuel Berkovic, director of the Epilepsy Research Center, scientific director of the Brain Research Institute, and the Laureate Professor in the department of medicine at the University of Melbourne, decided to revisit the question of what was causing epilepsy and mental retardation in children after DTP vaccine. Berkovic was particularly interested in a type of epilepsy called Dravet’s Syndrome: a genetic disorder. First described by Charlotte Dravet in 1978, the syndrome included children who had seizures and mental retardation exactly like those described in Lea Thompson’s program. But Charlotte Dravet had described her syndrome in children, not adults. And Berkovic only took care of adults. “I just vividly remember seeing in the clinic this woman who was in her mid-forties,” he recalled. “I had treated her for fifteen or twenty years. [She had] a very devoted mother who would bring her to see me. And it’s actually hard to recognize [Dravet’s Syndrome] in adults because the clinical features have their evolution in the first couple years of life. Then the penny dropped. This is Dravet’s Syndrome!” Samuel Berkovic was the first person to postulate that adults with seizures and retardation who were labeled vaccine-damaged as children might instead be suffering from Dravet’s. He remembered the emotional burden that the mother had carried for more than forty years: “Why did she get her daughter vaccinated? If only she hadn’t gotten her vaccinated this terrible thing wouldn’t have happened. And she carried the guilt and grief of all of this. So we started looking aggressively to collect the cases.”
Samuel Berkovic, a neurologist at the University of Melbourne, was the first to figure out what had caused seizures and mental retardation in the children featured in Lea Thompson’s
DPT: Vaccine Roulette
. (Courtesy of Dr. Samuel Berkovic.)
DPT: Vaccine Roulette
. (Courtesy of Dr. Samuel Berkovic.)
In 2006, Samuel Berkovic evaluated fourteen people with severe epilepsy and mental retardation. All had developed their first seizures between two and eleven months of age; all had received the pertussis vaccine within the previous forty-eight hours; and several had been compensated for damage allegedly caused by the vaccine. Some had had fever following the vaccine, but most hadn’t. Berkovic believed that all suffered from Dravet’s Syndrome. So he looked to see whether they had a genetic defect that caused the problem. He found that eleven of the fourteen had a defect in the gene that regulates the transport of sodium in brain cells. (The specific gene is called
SCN1A
; and the specific disorder, a sodium channel transport defect.) Recognizing that vaccines can’t change a child’s genetic makeup—and that 100 percent of children with
SCN1A
defects will have seizures and mental retardation independent of whether they receive vaccines—Berkovic wrote, “The identification of a genetic cause of encephalopathy in a particular child should finally put to rest the case for vaccination being the primary cause.” In the last few sentences of his landmark paper, Samuel Berkovic made a plea on behalf of children with epilepsy: “Correct diagnosis will reassure the family as to the true cause, remove the blame of having vaccinated the child, direct appropriate treatment, and allow realistic planning for prognosis.”
SCN1A
; and the specific disorder, a sodium channel transport defect.) Recognizing that vaccines can’t change a child’s genetic makeup—and that 100 percent of children with
SCN1A
defects will have seizures and mental retardation independent of whether they receive vaccines—Berkovic wrote, “The identification of a genetic cause of encephalopathy in a particular child should finally put to rest the case for vaccination being the primary cause.” In the last few sentences of his landmark paper, Samuel Berkovic made a plea on behalf of children with epilepsy: “Correct diagnosis will reassure the family as to the true cause, remove the blame of having vaccinated the child, direct appropriate treatment, and allow realistic planning for prognosis.”
Berkovic was surprised by the reaction to his paper. “I was very excited about this [work],” he recalled. “I thought it was one of the most, if not
the
most, important thing I’d ever done.” Following publication, several commentaries praised the work, one calling it the most outstanding paper of 2006. “Most of my neurologist colleagues thought that the paper was really important because they’re the people that see these cases directly. But among the vaccine community I couldn’t get any traction. We were trying to get a much bigger study together and collect more cases and we just couldn’t. I got a bit dispirited and gave up. Why didn’t it get traction? I don’t know. It befuddled me. Maybe it’s because it was something from a bygone era.”
the
most, important thing I’d ever done.” Following publication, several commentaries praised the work, one calling it the most outstanding paper of 2006. “Most of my neurologist colleagues thought that the paper was really important because they’re the people that see these cases directly. But among the vaccine community I couldn’t get any traction. We were trying to get a much bigger study together and collect more cases and we just couldn’t. I got a bit dispirited and gave up. Why didn’t it get traction? I don’t know. It befuddled me. Maybe it’s because it was something from a bygone era.”
After Berkovic’s paper, it was clear that all the time spent by parents to get health officials to admit that pertussis vaccine had permanently harmed children, all the money spent by pharmaceutical companies to compensate alleged victims, all the work of lawmakers to create a system to deflect lawsuits away from these companies, and all the ink devoted by the media to support these children and their parents had been an enormous diversion from the real cause of the problem.
Although parents of children with epilepsy and mental retardation were wrong in believing that pertussis vaccine was at fault, they were right in several respects: First: it’s likely that their children had appeared perfectly normal before they received the vaccine. Many infants with epilepsy and retardation syndromes have no symptoms for the first few months of life.
Second: many doctors had assumed that seizures following DTP had been febrile seizures and falsely reassured parents that these were common and nothing to worry about. During Paula Hawkins’s hearings into the safety of the pertussis vaccine, Marge Grant, whose son Scott had been prominently featured in
Vaccine Roulette
, submitted written testimony. “Before I go into the grave injustice we’ve encountered through the entire court system, including the U.S. Supreme Court,” she wrote, “I wish to re-emphasize that Scottie did NOT display a ‘fever’ after any of the shots.” Consistent with Grant’s testimony, most of the children in Berkovic’s study hadn’t had seizures that were precipitated by fever, either.
Vaccine Roulette
, submitted written testimony. “Before I go into the grave injustice we’ve encountered through the entire court system, including the U.S. Supreme Court,” she wrote, “I wish to re-emphasize that Scottie did NOT display a ‘fever’ after any of the shots.” Consistent with Grant’s testimony, most of the children in Berkovic’s study hadn’t had seizures that were precipitated by fever, either.
Third: parents were right in pointing out that no one else in the family had had epilepsy. During
Vaccine Roulette
, Marge Grant took aim at the Food and Drug Administration (FDA), elicited the support of Jimmy and Rosalynn Carter, and skewered pharmaceutical companies for misrepresenting, hiding, or shredding data. But during Hawkins’s hearing, Grant also directed her anger toward doctors. “As I look back at this nightmare and the severity of Scott’s injury,” she recalled, “I do not believe he is just one unusual, obscure case, who displayed almost no early symptoms, yet suffered profound permanent damage. I am convinced there is an extremely fine line, such as in Scott’s instance, where major vaccine problems exist, but actually go undetected by parents until much later, when they are finally told the child’s developmental deficits must be genetic. Can you imagine the trauma that must hit a parent? If they felt it was genetic, they would probably never have another child.” Grant knew that neither her own nor her husband’s family had a history of epilepsy or retardation. But she hadn’t understood that not all genetic problems are inherited. Samuel Berkovic subsequently addressed this issue in his study. He noted, “In nine of the eleven patients with
SCN1A
mutations for whom samples from both parents were available, the mutations were absent in parental DNA and thus arose
de novo
.” This meant that the genetic mutation had occurred spontaneously during conception.
Vaccine Roulette
, Marge Grant took aim at the Food and Drug Administration (FDA), elicited the support of Jimmy and Rosalynn Carter, and skewered pharmaceutical companies for misrepresenting, hiding, or shredding data. But during Hawkins’s hearing, Grant also directed her anger toward doctors. “As I look back at this nightmare and the severity of Scott’s injury,” she recalled, “I do not believe he is just one unusual, obscure case, who displayed almost no early symptoms, yet suffered profound permanent damage. I am convinced there is an extremely fine line, such as in Scott’s instance, where major vaccine problems exist, but actually go undetected by parents until much later, when they are finally told the child’s developmental deficits must be genetic. Can you imagine the trauma that must hit a parent? If they felt it was genetic, they would probably never have another child.” Grant knew that neither her own nor her husband’s family had a history of epilepsy or retardation. But she hadn’t understood that not all genetic problems are inherited. Samuel Berkovic subsequently addressed this issue in his study. He noted, “In nine of the eleven patients with
SCN1A
mutations for whom samples from both parents were available, the mutations were absent in parental DNA and thus arose
de novo
.” This meant that the genetic mutation had occurred spontaneously during conception.
Soon after Samuel Berkovic published his paper, Simon Shorvon and Anne Berg, researchers in England and the United States, wrote an editorial discussing the importance of its findings. “If properly communicated,” they wrote, “the Australian findings should also do much to improve the public’s understanding of the true risks and the safety of this vaccine.” During the pertussis scares in England and the United States, scares that spilled over into virtually every developed country in the world, thousands of media outlets falsely alerted parents to the harm caused by pertussis vaccine. But when Samuel Berkovic finally found the answer to the question of what had actually caused the problem, no one noticed. Not a single newspaper, magazine, or radio or television program carried the story.
CHAPTER 4
Roulette Redux
If you watch TV you know less about the world than if you just drink gin out of a bottle.
—GARRISON KEILLOR
L
ea Thompson began
DPT: Vaccine Roulette
in 1982 with a clear statement of purpose: “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.” Unfortunately, throughout
Vaccine Roulette
, Thompson did much to misinform her viewers.
ea Thompson began
DPT: Vaccine Roulette
in 1982 with a clear statement of purpose: “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.” Unfortunately, throughout
Vaccine Roulette
, Thompson did much to misinform her viewers.
When Thompson interviewed Larry Baraff of the UCLA Medical Center about his study of the side effects of pertussis vaccine, she said, “The study estimates one of every seven hundred children had a convulsion or went into shock.” But Baraff’s study never mentioned the word s
hock
. Rather, it described nine children who developed hypotonic hyporesponsive episodes, in which a child is temporarily limp and unresponsive. The hallmark of shock is low blood pressure resulting in decreased blood flow to critical organs. No such problem was mentioned in Baraff’s study nor has such a problem ever been found to be caused by pertussis vaccine.
hock
. Rather, it described nine children who developed hypotonic hyporesponsive episodes, in which a child is temporarily limp and unresponsive. The hallmark of shock is low blood pressure resulting in decreased blood flow to critical organs. No such problem was mentioned in Baraff’s study nor has such a problem ever been found to be caused by pertussis vaccine.
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