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Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cure

Paul A. Offit, MD, FAAP

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Paper, 328 pages, 12 illus.
ISBN: 978-0-231-14637-1
$17.95 / £11.95

September, 2008
Cloth, 328 pages, 12 illus.
ISBN: 978-0-231-14636-4
$29.95 / £19.95

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Excerpt from the Epilogue

At the time of Jenny McCarthy’s book tour, ten studies had examined the relationship between MMR vaccine and autism and five between thimerosal and autism. All showed exactly the same thing: vaccines didn’t cause autism. But with the help of television celebrities like Oprah Winfrey, Diane Sawyer, and Larry King, Jenny McCarthy was able to successfully counter these studies. She did it using several tried-and-true strategies.

McCarthy trumped science with personal anecdote. ("My science is Evan, and he’s at home. That’s my science.") Had any of these tele vision hosts chosen to have autism experts on their show, these experts would have had to argue against a mother’s personal, emotional story with statistics showing she was wrong—a nearly impossible task. The closest any of these shows came to including an expert was when Oprah Winfrey read a statement provided by the CDC. Unfortunately, the CDC—represented as a faceless, distant organization, not a caring person—didn’t stand a chance.

McCarthy was persuasive not only because she was a mother who cared, but also because she was a mother who had found a cure for autism. If parents wanted to cure autism, all they had to do was remove harmful toxins and fungi from their children’s bodies. ("Evan was excreting yeast out of every part of his body, and every time he did, he would break through more. When my girlfriend came over, she said, ‘Holy shit, Evan just had a con­versation with me.’") McCarthy’s cure was reminiscent of a similar cure that had been promoted on network television several years earlier by Victoria Beck, who had claimed that secretin had cured her son. Mothers like Jenny McCarthy and Victoria Beck offer something that the physicians and scientists don’t: a cure. "I think that it’s very hard to defeat a wrong conviction by just saying that what [someone] believes is not true," says Harvey Fineberg, president of the Institute of Medicine.

Another strategy that clearly resonated with the television audience—and had been used with great success by Andrew Wakefield—was the conviction that doctors needed to listen to parents; therein lay truth. Jerold Kartzinel trumpeted this theme on Larry King’s show by explaining that if mothers believed that vaccines caused autism, then vaccines caused autism. ("I think the first thing we have to understand as a medical community is we have to listen to the parents tell us what’s going on.") Kartzinel failed to realize that doctors and scientists have listened to parents. That’s why they had performed sixteen studies examin­ing whether vaccines caused autism and three examining whether vaccines caused subtle developmental or psychological problems. The most recent study performed by the CDC, involving more than 1,000 children evaluated with forty-two different neurological tests, took several years to perform and cost more than $5 million. The issue for people like Jenny McCarthy isn’t that doctors and scientists and public health officials haven’t listened to parents; it’s that they’ve been unable to find any evidence to validate parents’ concerns.

McCarthy also appealed to the strongly held societal notion that anyone can be an expert. ("After doing my Lorenzo’s Oil and going online and researching, I found that by fixing this, the sickness, the toxins, he was getting better.") McCarthy had trumped her pediatrician’s four years of medical school, three years of residency training in pediatrics, and many years of experience practicing medicine by typing the word autism into Google. There she found a wealth of purported therapies her pediatrician didn’t know about—therapies she believed had cured her son. She was amazed that an underground network of doctors—the only doctors who seemed to care about children with autism—was available at her fingertips. It was inconceivable to her that her pediatrician didn’t know what she now knew. That the theories proposed by these doctors are varied or contradictory; that their therapies can be dangerous; that some of these doctors had been brought up before disciplinary committees for substandard medical practices; and that her doctor, far from not knowing about them, was more likely frightened by them was not some­thing that McCarthy had considered possible.

By writing a popular book about her son’s autism, Jenny Mc­Carthy had become a media expert on vaccines. ("In 1983, the vaccine schedule was ten: ten vaccines given. Now, today, there are thirty- six, and a lot of people don’t know that.") Actually, seven vaccines were routinely given to infants and young children in 1983: measles, mumps, rubella, diphtheria, tetanus, pertussis, and polio. And fourteen are given today; the additions are Haemophilus influenzae type b, hepatitis A, hepatitis B, rotavirus, pneumococcus, chickenpox, and influenza. But to Larry King and his producers, misstatements of fact didn’t seem to matter: thirty-six vaccines, fourteen vaccines, close enough. It would have been nice if Jerold Kartzinel, described as a pediatri­cian and autism expert, had countered McCarthy’s misinformation. But Kartzinel had been treating autistic children with alternative therapies for years. When Andrew Wakefield left England in February 2004, Kartzinel and the Good News Doctor Foundation offered him refuge in Kartzinel’s International Child Development Resource Center. In addition to "curing" hun­dreds of children with autism, Kartzinel claims to have cured his father- in-law’s Alzheimer’s disease. By choosing Jenny McCarthy (an actress and model) and Jerold Kartzinel (a man who believed he had found cures for both autism and Alzheimer’s disease), Larry King denied his viewers any chance to be educated about autism, its complexities, or its causes.

Four months after Jenny McCarthy’s book tour, the vaccine-autism controversy again took center stage, this time with a surprising twist. On January 31, 2008, ABC aired the fi rst episode of the television drama Eli Stone. Stone is a corporate lawyer who, following a hallucinatory visitation by George Michael singing "Faith," decides to represent a mother who believes her son’s autism was caused by an influenza vaccine. Stone is a fictional lawyer going up against a fictional pharmaceutical company (Butel) that makes a vaccine containing a fictional preservative (mercuritol, which contains mercury). Unfortunately, the ripped-from-the-headlines story line was far from fictional.

The episode sounded several well-worn themes. First, pharmaceutical companies are evil. Stone found that Butel’s CEO had insisted his daughter receive an influenza vaccine free of mercury—one made by another company (in other words, the CEO was suspicious of the mercuritol made by his own company). After the jurors heard his confession, they awarded the mother $5.2 million. Second, Stone supported the myth that some studies have found that vaccines cause autism. "Is there proof that mercuritol causes autism?" Stone asks the jury during his summation. "Yes," he says. The show never mentioned the six epidemiological studies that had clearly refuted this belief. Third, faith trumps science. During the trial, Stone visits an acupuncturist, Dr. Chen, to help relieve his hallucinations. Chen explains that Stone is going to have to make a choice. "Everything has two explanations: scientific and the divine," says Chen. "We choose which one to believe." When Chen says divine, he points to the setting sun, bathed in a heavenly glow. Later, Stone asks the jury to have faith even if it contradicts the evidence. "Ask yourself if you’ve ever believed in anything or anyone without absolute proof," he says. "That’s called faith."

Although ABC’s failure to accurately represent scientific studies wasn’t surprising, the media’s response to the episode was. When Robert F. Kennedy Jr. had claimed that federal health officials were part of a conspiracy to hide information, Rolling Stone magazine had been more than happy to publish the story. Similarly, when David Kirby wrote Evidence of Harm, or when politicians decried vaccines on Don Imus’s radio program, or when parent advocacy groups took out full-page advertisements in USA Today and the New York Times, or when Jenny McCarthy promoted her book on the Oprah Winfrey Show, the mainstream press had always been willing to carry the story as a controversy. Not this time. Several days before the Eli Stone episode aired, Ed Wyatt wrote an article in the New York Times. Wyatt noted that ABC took "several liberties that could leave viewers believing that the debate over thimerosal—which in the script is given the fictional name mercuritol—is far from scientifi cally settled." But Wyatt countered that "reams of scientific studies by the leading American health authorities have failed to establish a causal link between the preservative and autism. Since the preservative was largely removed from childhood vaccines in 2001, autism rates have not declined." Choosing perspective over balance, Wyatt didn’t interview David Kirby or Sallie Bernard or Lyn Redwood or Robert F. Kennedy Jr. to get the other side of a story in which scientific evidence supported only one side. He wasn’t alone. Editorials in the Boston Globe, New York Post, New York Times, and an article in USA Today also questioned ABC’s judgment.

Public health groups were also galvanized. Renée Jenkins, president of the AAP, wrote a letter to Anne Sweeney, president of the Disney-ABC Tele vision Group. Jenkins knew that seventy-four children had died of influenza in 2007 and more than 300 had died in the previous four years. She mentioned this statistic in her letter and continued, "ABC will bear responsibility for the needless suffering and potential deaths of children from parents’ decisions not to immunize based on the content of the [Eli Stone] episode." Jenkins called ABC’s program "the height of reckless irresponsibility" and asked ABC to cancel the episode. If ABC insisted on showing the program, Jenkins asked the network to include a disclaimer stating that "no scientific link exists between vaccines and autism." ABC never formally responded to Jenkins by letter, e-mail, or phone, and it didn’t include the dis­claimer she had requested. Greg Berlanti, the cocreator and executive producer of Eli Stone, said he believed the episode showed both sides of the argument, and he wanted viewers to "draw their own conclusions."

Autism experts also took a stand. Nancy Minshew, director of the University of Pittsburgh’s Center for Excellence in Autism, said, "The weight of evidence is so great that I don’t think that there is any room for debate. I think the issue is done. I’m doing this for all the families out there who don’t have a child with autism, who have to deal with the issue of ‘Do I get a vaccination or do I risk my child’s life’ because they don’t understand what the science is saying."

One lawyer also stepped forward on behalf of children. Alan Schwartz, an attorney in Columbia, Maryland, was inspired to write a letter to ABC. "Airing creative shows that stimulate discussion on controversial topics, or airing shows that are purely entertainment such as science fiction programs, is within the legitimate bounds of a free press," wrote Schwartz. "Running shows that misinform the public or titillate people to the point that they may act irresponsibly thereby causing harm—especially to children—is not. You can expect that if any child were to become seriously ill or die from a lack of inoculation in the years following airing of this episode of Eli Stone . . . then lawyers like myself will hold ABC responsible for the damage the television show caused."

No single episode in the vaccine-autism controversy had mobilized the public health community more than the Eli Stone affair.

On August 1, 2007, the American Lawyer offered its readers the lay of the land for lawsuits against the federal government and vaccine makers. "The stakes are high for autism families," wrote Elizabeth Goldberg. "Lawyers in autism cases say that the cost of treatment can run into the millions per victim." Stephen Sugarman, a professor at the School of Law at the University of California at Berkeley, saw the growing alliances against vaccines. "There are a lot of people who strongly believe in this connection, and no amount of science is going to dissuade them," he said. "They are organized. They have congressmen and celebrities on their side. And they have a group of lawyers who have now made thimerosal litigation their specialty."

On September 25, 2007, in the midst of Jenny McCarthy’s book tour, Generation Rescue took out a full-page advertisement in USA Today. Under the headline "Are We Overvaccinating Our Kids?" the advertisement explained that children received ten vaccines in 1983 and received thirty-six vaccines today, the same numbers that Jenny McCarthy had claimed during her appearance on Larry King Live. The advertisement was constructed by Fenton Communications, the same group that had been hired to gain media attention for cases against silicone breast implants and Alar. J. B. Handley, Fenton Communications, Jenny McCarthy, Jerold Kartzinel, and other like-minded crusaders against vaccines were now doing their part to educate the public (which consists of potential jurors) about the harm of thimerosal. Stephen Sugarman isn’t optimistic about the out­come. "Jurors’ eyes gloss over when you start talking about epi­demiology," said Sugarman. "Experience tells us that jurors don’t trust or necessarily understand science and they are likely to make a decision completely inde pendent of it."

The science is largely complete. Ten epidemiological studies have shown MMR vaccine doesn’t cause autism; six have shown thimerosal doesn’t cause autism; three have shown thimerosal doesn’t cause subtle neurological problems; a growing body of evidence now points to the genes that are linked to autism; and despite the removal of thimerosal from vaccines in 2001, the number of children with autism continues to rise. Now it’s up to certain parent advocacy groups, through their public relations firms, lawyers, and celebrity spokespersons, to convince the public that all of these studies are wrong—and to convince them that the doctors who proffer their vast array of alternative medicines are the only ones who really care.

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COPYRIGHT NOTICE: Published by Columbia University Press and copyrighted © 2008 by Paul A. Offit. All rights reserved. No part of this book may be reproduced in any form by any electronic or mechanical means (including photocopying, recording, or information storage and retrieval) without permission in writing from the publisher, except for reading and browsing via the World Wide Web. Users are not permitted to mount this file on any network servers. For more information, please e-mail us or visit the permissions page on our Web site.

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About the Author

Paul A. Offit, MD, FAAP is the chief of Infectious Diseases and the director of the Vaccine Education Center at the Children's Hospital of Philadelphia as well as the Maurice R. Hilleman Professor of Vaccinology and professor of pediatrics at the University of Pennsylvania School of Medicine. He has received numerous awards, including the J. Edmund Bradley Prize for Excellence in Pediatrics from the University of Maryland School of Medicine, the Young Investigator Award in Vaccine Development from the Infectious Diseases Society of America, and a Research Career Development Award from the National Institutes of Health. An international expert on rotavirus-specific immune responses, Dr. Offit is the coinventor of the rotavirus vaccine RotaTeq, for which he received the Jonas Salk Award from the Association for Professionals in Infection Control and Epidemiology, the Gold Medal from the Children's Hospital of Philadelphia, and the Stanley A. Plotkin Award in Vaccinology from the Pediatric Infectious Diseases Society. He has donated all royalties from sales of this book to autism research.

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