So it goes.
—KURT VONNEGUT, SLAUGHTERHOUSE FIVE
On September 18, 2007, Oprah Winfrey interviewed actress enny McCarthy on her nationally televised daytime show. Few women are more respected than Oprah Winfrey; her philanthropy, goodwill, and common sense have made her one of the most trusted and powerful people in America. McCarthy came to Oprah to talk about her new book, Louder than Words, the story of how she had cured her son’s autism. For authors, an appearance on the Oprah Winfrey Show is as good as it gets; Oprah’s Book Club has launched a generation of readers.
Oprah: So what do you think triggered the autism?
McCarthy: I do have a theory [based on] mommy instinct. You know everyone knows the stats with one in 150 children with autism. What I have to say is this. What number does it have to be? What number does it take for people just to start listening to what the mothers of children with autism have been saying for years—which is that we vaccinated our babies and something happened. That’s it. And we don’t know why. I told my pediatrician, “Something happened.” And the reaction I got was of making me feel dumb and stupid, and I felt very alone in this.
Oprah: How were you made to feel alone?
McCarthy: Because right before my son got the MMR shot I said to the doctor, “I have a very bad feeling about this shot. This is the autism shot, isn’t it?” And he said, “No! That is ridiculous. It is a mother’s desperate attempt to blame something on autism.” And he swore at me. And then the nurse gave [my son] that shot. And I remember going, “Oh, God, no!” And soon thereafter I noticed a change. The soul was gone from his eyes. And the thing is [that] I’m not against vaccines. We do need them. I am all for them. But there needs to be a safer vaccine. Something needs to be done, and people need to start listening to what the moms are saying.
Oprah: Of course, we talked to the Centers for Disease Control and asked them whether there was a link between autism and childhood vaccines. And here’s what they said. “We simply don’t know [Oprah paused for several seconds] what causes most cases of autism, but we’re doing everything we can to find out. The vast majority of science to date does not support the association between thimerosal in vaccines and autism, but we are currently conducting additional studies to determine what role, if any, thimerosal in vaccines might play in the development of autism.
McCarthy: My science is Evan, and he’s at home. That’s my science. [Loud, thunderous applause].
The day after Oprah’s interview with Jenny McCarthy, anxious parents flooded the CDC with calls about the safety of vaccines; pediatricians were also inundated with questions.
THE FOLLOWING WEEK, ON SEPTEMBER 24, 2007, MCCARTHY APPEARED on Good Morning America with Diane Sawyer.
McCarthy: I wish I would have known what I know now, because I know things would have ended up a lot differently for Evan.
Sawyer: What do you mean?
McCarthy: With all of my belief and knowledge now in terms of vaccinations and toxins in the world and infections, I do believe like many, many thousands of moms out there, that it pushed them into what we’re calling autism. And 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. But the pediatricians aren’t offering up this kind of information. It’s all up to the moms.
McCarthy couldn’t believe the gold mine she had found on the Internet, reading about what caused autism and how to cure it. “Evan was possibly born with a weaker immune system,” she wrote. “Getting vaccinated wreaked havoc in his body, and mercury caused damage to his gut . . . and one could see the result of this damage when he consumed wheat or dairy. It messed with his little body so much that he wouldn’t respond when his name was called; he behaved like a drunk, and the list goes on.” On the Internet, McCarthy learned that autism could be treated with special diets. “After beginning a gluten- and casein-free diet with vitamin supplements, mothers reported huge changes to their children, sometimes even recovery from autism. I had to make sure I wasn’t hallucinating, so I read that again. Could it really be true? Could diet make that much of an impact? And if this was true, why wasn’t it on 20/20? Why did moms have to find out on their own?”
McCarthy described what happened when she treated her son. “I did start vitamin B12 shots twice a week, and I was honestly blown away by what I saw,” she wrote. “His speech doubled on the days I gave him the shots.” The vitamin B12 shots were only the beginning. McCarthy visited a DAN doctor in San Diego who started Evan on Diflucan, a medication that kills fungi that typically live in the intestine. The results were dramatic. “Evan was still excreting yeast out of every part of his body, and every time he did, he would break through more,” she wrote. “It was so liberating that I started inviting people back into my house. When my girlfriend came over, she said, ‘Holy shit, Evan just had a conversation with me.’ I stood in that moment and relished the confirmation of Evan’s healing. It was happening before everyone’s eyes. It had been about a month and a half, and Evan was still going through major yeast die-offs. According to my Google degree on yeast, this would continue until his body was a bit more balanced. I knew a big dump of yeast was about to come out of his butt when Evan looked like the Tasmanian Devil. I eventually moved everything I liked to the top shelves so it wouldn’t be thrown across the room by a violent, yeast-excreting three-year-old.”
TWO DAYS LATER, ON SEPTEMBER 26, 2007, MCCARTHY APPEARED ON Larry King Live. This time she wasn’t alone: she was joined by Jerold Kartzinel, the doctor from Melbourne, Florida, who believed MMR had caused his youngest son’s autism.
King: By the way, the quick vote on our Web site. The question was, “Do you know someone with autism?” Currently, 74 percent say they do—a number indicating how tragically common this has become. Does this surprise you?
McCarthy: No, it doesn’t. You know why? [Because] 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.
Later in the show, King introduced Kartzinel as “a board certified pediatrician [whose] practice is devoted to the research and treatment of autism and other neurodegenerative disorders.” Kartzinel had written the introduction to McCarthy’s book, where he had referred to his autistic son: “By adding cod liver oil to his diet, we witnessed the return of eye contact and language. Autism is treatable!”
King: So what do you make of this theory we’ve been kicking around here with Jenny and the like with vaccines?
Kartzinel: You can’t do the same thing to an entire population and not expect something to happen. For example, if you were to give every child in the United States a kitty cat to go home with, you know the majority would do well. But there’s a small group that would not do well with the cats. The first thing we think about are allergies; they could get bit by the cats; the cats could run away. If we give every child a cat and a dog, we’ve got interactions, with the cats, the dogs, and between them, and you add the hedgehog and all of a sudden we’re stacking things up and we can cause problems with the animals.
King: But do you not give vaccines? What do you do with the vaccine if the vaccine is the problem but not every child is affected by it? What do you do?
Kartzinel: Well, I think we have to ask, first of all, is the vaccine a problem? I keep hearing from parents it is.
King: Jenny says it is.
Kartzinel: Certainly. If you tell me that your child woke up with ear pain and 102 [degree] fevers and I look in the ear and see an ear infection and prescribe an antibiotic, you’re right. If you tell me that your little guy had tummy aches and in the right quadrant, and he can’t walk, and he ends up having appendicitis, you’re right. Now you come in and tell me that my son has lost eye contact and language and is screaming all night and this happened a week ago right after a vaccine, all of a sudden you’re wrong? 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.
McCarthy: Please listen to the parents.
McCarthy later appeared on ABC’s 20/20 and The View. Within a week of those interviews, her book was ranked fourth on the New York Times nonfiction best-seller list, behind only those written by Alan Greenspan, Bill Clinton, and the family of Ron Goldman.
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 television 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 influenzaetype 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 first 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 scientifically 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 Television 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 independent 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.