Within fifteen minutes of the start of Scheflen’s presentation, murmured conversations had begun to break out throughout the hall. After a series of glitches with the hotel’s AV system, a visibly flustered Scheflen began to peer offstage. “So, um, I think Miss Jenny—is she here?” Indeed she was. Scheflen quickly wrapped up, and when McCarthy stepped out from the wings, the crowd erupted. One woman started hopping up and down like a teenager at a Taylor Swift concert, shouting over and over, “We love you, Jenny!”
McCarthy was dressed casually—she had on a pink zip-up sweater and jeans, and her hair was pulled into a tight ponytail—and when she took the stage, she started clapping along with the audience. “How many people are back from last year?” Hundreds of hands shot up. “I love it! We have an overflow crowd in the other room, so I’ll give a shout-out to them.” Then, in lieu of a prepared speech, McCarthy told the audience she’d rather answer questions they had about her journey.
“ ‘Jenny,’ ” she said, reading off a note card, “ ‘will you please repeat the five steps you said last year? That was a huge help to us.’ ” That, McCarthy explained, was a reference to the checklist she keeps on her refrigerator. “The first one I call cleaning the bucket. All these kids have a bucket of toxins, infections, funguses,” she said. Before they can treat their children effectively, McCarthy explained, parents needed to properly identify the problem: “PLEASE go and get allergy testing. If you want to know what kind, it’s in my book.” Step two is cleaning out the fungus: “A lot of these kids are malnourished. . . . please, please don’t forget about that.” Step three is detoxification, either using chelation or any number of other therapies. “You know, I’ve been getting glutathione IVs every weekend because I’m starting to take care of myself,” she said. (Glutathione is a naturally occurring antioxidant that is depleted in patients with wasting diseases such as sepsis, cancer, and AIDS. There has never been a clinical trial on the effects of glutathione infusions in healthy humans or developmentally disabled children.) “I was a cold sore, herpes monster. . . . I was a mess. I started glutathione and in the last three months I haven’t had a cold sore.”
After acknowledging the irony of her next recommendation, McCarthy explained that step four was drugs. “Even though some of us are so angry at the pharmaceutical companies,” she said, “I’m grateful for the medicine that we do need to get our kids better.” According to McCarthy, antifungals and antivirals were especially important; in fact, she said she knew one child who fully recovered from autism in less than three months as a result of antiviral therapy.
Finally, there was step five: positive thinking. “I love that one more than anything,” McCarthy said, because it demonstrates the power parents have to change their lives. “If you think, ‘My kid is going to get better,’ he’s going to get better. If you keep thinking, ‘My kid is going to be sick,’ he’s going to be sick.” (Presumably, a more detailed explanation of how that process worked was provided at one of the conference’s earlier lectures, which covered a philosophy that involves wishing your way to better health.)
“I’ve come to trust other parents more than anyone during this journey,” McCarthy said. “I salute you all for being here today, and for believing and trusting and working on your child, for spending the money and the time and the tears on autism.” There are so many people, McCarthy said, who don’t come to these conferences, a fact that left her dumbfounded. “It breaks my heart,” she said, when she meets the parents of a child with autism and “they still refuse to do anything.”
What McCarthy seemed to be saying was that it broke her heart when parents refused to do everything: buy books and DVDs; try chelation and hyperbaric chambers; take supplements, make gluten-free meals, and eat organic chickens; march on Washington, write elected officials, and sign petitions; use DAN! doctors, travel across the country for treatment at special clinics, and ignore anyone who suggests otherwise . . . and if none of that works, start all over again.
Besides being expensive and exhausting, one disadvantage of that approach is that it’s impossible to know if any of it actually does any good. An indiscriminate attitude toward treatment also makes it hard to determine what changes are due to the natural rhythms of disease: Temporary ailments by definition get better and the symptoms of lifelong conditions almost always wax and wane, which means that even the most far-fetched cure is bound to look like a winner every now and again. In his book Innumeracy, the mathematician John Allen Paulos describes how proponents of pseudoscientific therapies rely on this reality to shade their products in the best light possible. “To take advantage of the natural ups and downs of any disease (as well as of any placebo effect),” Paulos writes, “it’s best to begin your worthless treatment when the patient is getting worse. In this way, anything that happens can more easily be attributed to your wonderful and probably expensive intervention. If the patient improves, you take credit; if he remains stable, your treatment stopped his downward course. On the other hand, if the patient worsens, the dosage or intensity of the treatment was not great enough; if he dies, he delayed too long in coming to you.”
James Laidler, a medical doctor who teaches in the biology department at Portland State University, has firsthand experience with the lure of this approach. About a year after his oldest son was diagnosed with autism, Laidler’s wife returned home from an autism conference flush with stories about how seemingly intractable cases of the disease had been “cured.” While initially skeptical, Laidler agreed there was no harm in seeing if their son responded to some of the vitamins and supplements that had been recommended. Soon after that, the couple removed gluten and casein from their son’s diet. The next thing they tried was hormone therapy. “Some of it worked—for a while—and that just spurred us to try the next therapy on the horizon,” Laidler wrote in an essay about his experiences. When the Laidlers’ second son started showing autistic-like symptoms, they decided to treat him as well. It was around this time that Laidler went with his wife to an autism conference and saw firsthand what had so impressed her. “[I] was dazzled and amazed,” he wrote. “There were more treatments for autism than I could ever hope to try on my son, and every one of them had passionate promoters claiming that it had cured at least one autistic child.”
This was how the family found themselves headed to Disneyland with forty pounds of preapproved food for their two boys, “lest a molecule of gluten or casein catapult them back to where we had begun.” That’s exactly what they were convinced would happen when, during an unobserved moment, their younger son ate a waffle he’d snatched off a table. “We watched with horror and awaited the dramatic deterioration of his condition that the ‘experts’ told us would inevitably occur,” Laidler wrote. “The results were astounding—absolutely nothing happened.” Over the next several months, the Laidlers stopped every treatment except for occupational and speech therapy. Not only did their sons not deteriorate, they “continued to improve at the same rate as before—or faster. Our bank balance improved, and the circles under our eyes started to fade.” During those years in which he and his wife had been religious devotees of various biomedical treatments, Laidler wrote, they’d just been “chasing our tails, increasing this and decreasing that in response to every change in his behavior—and all the while his ups and downs had just been random fluctuation.”
In some ways, the Laidlers were lucky: The cost of trying every new treatment that comes along can be more than time, money, and dashed hopes, a fact that is tragically illustrated by chelation, the favored cure for ridding the body of “environmental” toxins. A large part of chelation’s appeal among parents lies with the way it tackles the putative problem head-on: It results in the literal expulsion—or “excretion,” to use the phrase favored by its proponents—of the hypothesized poisons from autistic children’s bodies. Unfortunately, as can be expected from a chemical cleansing process originally designed during World War I as a treatment for mustard gas exposure, chelation comes with a signifi
cant amount of risk. When Liz Birt’s son, Matthew, was chelated, his condition seemed to worsen, and in one instance, chelation preceded a grand mal seizure. Colten Snyder, whose family’s suit claiming the MMR vaccine had caused his autism was one of the Vaccine Court’s initial Omnibus Autism Proceeding test cases, had an even worse experience: After his second round of chelation, a nurse wrote in his medical records that he went “berserk.” He also became aggressive and noncompliant, became more prone to tantrums, and exhibited increased repetitive behaviors. After his third round of treatment, he was brought to a medical facility due to severe back pain, which is one of the procedure’s known side effects.
Then there’s the case of Abubakar Nadama, who moved with his mother to Pennsylvania from Batheaston, England, because chelation is not permitted for the treatment of neurodevelopmental disorders in the U.K. On August 23, 2005, Abubakar went into massive cardiac arrest and died while receiving intravenous chelation therapy from a sixty-eight-year-old ear, nose, and throat specialist named Roy Kerry. In a presentation at the 2009 AutismOne conference titled “Starting the Biomedical Treatment Journey,” TACA’s Lisa Ackerman told parents they couldn’t let Abubakar’s death dissuade them. “I’m going to not be politically correct again,” she said. “There’s a child that passed away from chelation and it was extraordinarily sad and tragic. . . . The guy that gave the chelator to that little boy gave the wrong dose and the wrong type, and the kid had a heart attack because the doctor erred.” That didn’t mean, Ackerman said, that parents should be “afraid”; after all, they were going to need to “step it up” if they wanted their kids to get better. Ackerman failed to mention that less than a year after his patient died, “the guy that gave the chelator” was recognized as a DAN!-approved clinician, a designation that is obtained by attending a thirteen-hour seminar conducted by the Autism Research Institute, signing a loyalty oath to the organization’s principles, and paying an annual fee of $250. (In order to maintain certification, doctors must attend a continuing education seminar every two years.)
Another of Ackerman’s recommendations that morning was to buy some of the “thousands” of supplements marketed to parents of autistic children. Her personal favorites were those produced by a company called Kirkman Labs. “Go get their handy-dandy resource guide called ‘The Roadmap.’ That will tell you what supplements do what,” she said. “I’m a big fan of Kirkman’s because they’ve been around forever and their products are tried and true.” Less than nine months later, Kirkman did a voluntary recall of seven of their products because they contained high levels of antimony, a chemical element used in flameproofing, enamels, and electronics—and one that some anti-vaccine activists had recently been proposing as a potential cause of autism.
56 The only widely acknowledged treatment for autism is applied behavioral analysis, or ABA, which involves hours of one-on-one therapy per day.
CHAPTER 22
MEDICAL NIMBYISM AND FAITH-BASED METAPHYSICS
For decades, Jay Gordon—or “Dr. Jay” as he prefers to be called—has been more lenient than most of his peers about altering the vaccine schedule or skipping some shots altogether. He says that one reason for this stance was his exposure to “Vaccine Roulette” and “a relatively obscure European piece of literature” in the 1980s. Equally important is his stated philosophy, which is emblazoned across the top of every page of his Web site and which dovetails nicely with the “Mommy instinct” advocated by his most famous former client: “No one knows your child better than you do.”
Over the past several years, Gordon has become a self-appointed spokesman for “traditional” doctors who support the anti-vaccine camp—and where vaccines are concerned, Gordon’s belief is that it’s more important to be loud than to be right. “I’m a member in good standing at Cedars-Sinai [Medical Center], at UCLA [Medical Center], the AAP, and so on,” he told me when I asked him about Jenny McCarthy’s influence on the national debate over immunization practices. “We need someone who’s willing to yell about formaldehyde [being in vaccines]—even though it’s wrong. ‘There’s formaldehyde in vaccines!’—Well, actually, I don’t think there really is. . . . The role that [Jenny] plays is a higher visibility, she’s one of the higher visibility actors, she has a very good story, very telegenic, well connected to the media. She also happens to be quite knowledgeable. She’s not a ditz, she’s a smart woman and the mother of a child who she says suffered a vaccine injury.”
Perhaps this ends-justify-the-means approach to facts explains Gordon’s habit of making statements that veer between inaccurate and highly speculative. In the Foreword to one of McCarthy’s books, he wrote, “Vaccines can cause autism. . . . Period.” Later, in response to a Los Angeles Times article about the dangers posed by unvaccinated children, Gordon wrote a story in The Huffington Post that included this line: “Unvaccinated children do not pose a threat to vaccinated children or their families.”
An even better-known Southern California doctor who, despite having no specific training in immunology or public health, is an outspoken proponent of “working with” vaccine denialists is Bob Sears. Like Gordon, Sears prefers to be called by his first name only. He is, along with his father, William “Dr. Bill” Sears, the primary author of the more than a dozen books that make up the “Sears Parenting Library,” including The Baby Book and The Healthiest Kid in the Neighborhood. (The elder Dr. Sears is best known for his attachment parenting philosophy, which claims that parents who are not sufficiently responsive to their infants’ emotional needs put their children at risk for psychological and mental health problems later in life.)
“I became passionate about educating parents all over america [sic] when I discovered that there were no good, complete, unbiased sources of information out there for parents to read,” Sears wrote in an e-mail in response to a question about his initial interest in the controversy. “Everything was either completely pro vaccine or antivaccine. I wanted to create something that would give parents both sides of the story.” The result was 2007’s The Vaccine Book: Making the Right Decision for Your Child, which includes an “alternative” vaccination schedule that’s based on Sears’s personal experiences as a pediatrician. (Sears’s most recent best-seller about a topic in which he does not have specialized training is 2010’s The Autism Book: What Every Parent Needs to Know About Early Detection, Treatment, Recovery, and Prevention.)
Many of Sears’s colleagues disagree with his claim that he presents “both sides of the story.” “As a general pediatrician working in the community, I can say without hesitation that your book has done more to harm my efforts to educate families on vaccines and to give vaccines than to help them,” Brian Bowman wrote in a letter titled “ ‘Front Line’ Response to The Vaccine Book” that appeared in the December 30, 2008, issue of Pediatrics. According to Bowman, the time he spent talking to parents about vaccines “has shifted away from what has been discussed by Hollywood celebrities and more to parents wanting to follow your recommendations. You must understand that the timbre of your book, and your inability to offer the explicit truth regarding vaccines, their safety and the diseases they prevent supports the unfounded fears of parents. . . . [T]hey point at your book, and say that your book tells them it is not safe.”
Sears’s questionable assertions are by no means limited to his recommended schedule. In The Vaccine Book, he says that “natural” immunity is more effective than immunity gained through vaccination and implies that parents whose unvaccinated children come down with infections don’t regret their decisions. The book’s most startling passage, however, is included under the heading “The Way I See It.” “Given the bad press for the MMR vaccine in recent years, I’m not surprised when a family . . . tells me they don’t want the MMR,” he writes. Because there’s so little risk of getting infected, “I don’t have much ammunition with which to try to change these parents’ minds.” He, does, however, advise them against talking to their friends about their concerns: “I also warn them
not to share their fears with their neighbors, because if too many people avoid the MMR, we’ll likely see the diseases increase significantly.”
This brand of medical NIMBYism is consistent with an attitude toward medicine and personal health that’s been bubbling up in America for more than fifty years. To the extent that one can generalize about a period that saw more medical advances than in all of previous history, the great thematic struggle of the twentieth century was the attempt to reconcile a mechanistic view of the body with emerging philosophies of mental well-being. As Anne Harrington writes in The Cure Within, her history of mind-body medicine, for decades the tacit assumption was that these two ways of thinking were incompatible—you either believed the body responded to intangible, unconscious forces (e.g., psychosomatic medicine’s embrace of a Freudian approach to illness in the 1940s and 1950s) or that it operated according to immutable physiological laws (e.g., behavioral medicine’s priority of “laboratory based rigor” in the 1970s).
Sometime in the 1980s, the mind-body connection became an object of fascination for the public at large—and, in doing so, what had been an either/or debate became an all-of-the-above smorgasbord. A century after Christian Science founder Mary Baker Eddy preached that spiritual fitness could cure bodily harm, a view emerged that a mix of holistic approaches chosen by whim could—and probably should—be employed alongside modern medicine, almost as a way of hedging one’s bets. It’s no accident that a proposition that did not require people to make a choice—between Eastern and Western approaches to medicine, between spiritual and physical philosophies of healing—was articulated just as the first baby boomers were reaching middle age: This was a generation whose cultural identity depended in part on a belief that you could turn on and tune in without actually needing to drop out. The premise of a slogan like “if it feels good, do it” is that by virtue of feeling good, “it” is by definition the right thing to do.
The Panic Virus Page 28
