Killing Us Softly Read online

  Autism is caused by a defect in metabolism and should be treated with shots of vitamin B12. “It happened with Evan,” wrote McCarthy. “He was at UCLA autism school at the time and they said, ‘What did you just do? He just had a burst of language.’ And I said, ‘B12 shots.’”

  Autism is caused by chronic viral infections such as herpes and should be treated with antiviral medicines.

  Autism is caused by a blockage of the lymph glands and should be treated with lymphatic drainage massage.

  Autism is caused by intestinal parasites and should be treated with chlorine dioxide, a potent bleach used for stripping textiles and purifying industrial waste. (Bleach cocktails or enemas, which can be given as frequently as every two hours for three days, have caused severe vomiting and diarrhea.) Although one can only have sympathy for parents desperate to help their children, desperation can become child abuse.

  Autism is caused by vaccines. “Right before my son got the MMR [measles-mumps-rubella] shot, I said to the doctor, ‘I have a very bad feeling about this shot. This is the autism shot, isn’t it?’” McCarthy told Oprah. “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.” McCarthy didn’t want other parents to make the same mistake, later writing, “Many people ask me if I had to do it all over again with a new baby, would I vaccinate? The answer is no. Hell no.” Kartzinel, McCarthy’s co-author, agrees, writing that children shouldn’t receive vaccines if they have ever experienced cradle cap, constipation, diarrhea, sleep issues, tantrums, reclusiveness, transition issues, or red cheeks (in other words, everyone).

  Oprah was impressed. Impressed that Jenny had written a book that contained so much good advice. Impressed that Jenny had become an expert in the treatment of autism. “She wrote the book,” said Oprah. “She knows what she’s talking about.”

  The vitamins, minerals, supplements, coffee enemas, and herbs recommended by McCarthy to treat autism are the same therapies that were recommended by Michael Schachter to treat Joey Hofbauer’s Hodgkin’s disease, William Kelley to treat Steve McQueen’s mesothelioma, and Suzanne Somers to counter menopause and aging. Vastly different problems, eerily similar treatments.

  Although McCarthy doesn’t mention it in her books or television appearances, researchers have shed a great deal of light on the cause or causes of autism. For example, Ami Klin, at the Yale Child Study Center, studied babies who were only a few weeks old. He wanted to see how they attended to their mother’s face, finding that those who were developmentally normal looked into their mother’s eyes, while those later diagnosed with autism watched their mother’s mouth. Eric Courchesne, at the University of California at San Diego, found structural abnormalities in the brains of children later diagnosed with autism when they were still in the womb. And Hakon Hakonarson, of the Children’s Hospital of Philadelphia, along with many other investigators, found certain genetic abnormalities in autistic children. Researchers have also found that environmental factors can influence the risk of autism in the developing fetus—specifically, drugs like valproic acid (an anti-seizure medicine). Of interest, susceptibility to environmental influences appears to occur before children are born, not after.

  Given our current understanding of the disorder, McCarthy’s advice to treat autism as if it’s caused by parasitic infections, heavy-metal poisoning, or blocked lymph glands is nonsense. So it shouldn’t be surprising that whenever her therapies have been tested, they haven’t worked. Worse: McCarthy’s advice to avoid vaccines is not only useless; it’s dangerous. Parents who choose not to vaccinate aren’t lessening their children’s risk of autism; they’re only increasing their risk of suffering preventable diseases.

  Sometimes it’s hard to have much sympathy for the buyer. Adults who spend hundreds or thousands or even tens of thousands of dollars on the endless array of vanity items found in the cabinets of anti-aging gurus—all with the hope of turning back the clock—are going in with their eyes open. But when alternative healers take advantage of desperate parents, it’s a different story. Parents of children with autism will do anything to help their children. Perhaps no story shows just how desperate parents can be than one involving an obscure intestinal hormone called secretin.

  In the late 1990s, secretin became all the rage when a woman named Victoria Beck said that it had caused a dramatic improvement in her autistic son’s language acquisition. Others also claimed remarkable results. So autism researchers decided to test it. They divided children into two groups; one received intravenous secretin, the other intravenous salt water. None of the parents knew which preparation their children had received. The results were interesting. Most parents in the secretin group rated their children as improving. But so did parents whose children had received salt water. In other words, parents had such a strong desire to see results following an expensive intravenous medicine that they believed their children were improving, regardless of what they’d received. It’s hard to know why this was true. Maybe parents perceived children as better even though they weren’t. Or maybe parents had become more attentive, causing them to appreciate subtle differences they hadn’t seen before. Whatever the reason, salt water doesn’t treat autism, so something other than the pharmacological effect of secretin had been at work. Fifteen studies have now shown that secretin is no better than a placebo for autism.

  The most amazing part of the secretin story was what happened next. When parents were told that responses to secretin and salt water were indistinguishable, 69 percent still wanted to use the drug—still wanted to pay thousands of dollars and travel hundreds of miles to get something they now knew didn’t work. That’s how desperate they were. Because mainstream medicine didn’t have anything better to offer—didn’t have medicines that could make autism melt away—parents mortgaged houses and cashed in retirement accounts to find anyone who could promise hope, even if it was false hope. And even when they knew it was false.

  Alison Singer, founder of the Autism Science Foundation and a graduate of Yale University and Harvard Business School, explains how easily well-educated parents can be duped. “When my daughter, Jodie, was diagnosed with autism, I wanted to fix her,” she said. “I wanted to do everything possible to make her better. What kind of mother would I be if I didn’t try? At that point I didn’t realize how lifelong autism would be. We tried gluten- and casein-free diets. We tried dimethylglycine. People said you had to sprinkle it on French toast. So I learned to make French toast.” Singer’s moment of clarity came when she saw a doctor who had been recommended by a friend. “One time I took Jodie to a chiropractor,” she said. “He told me he could cure Jodie by rearranging the ions in her brain with a giant electromagnet placed under her mattress at night. And, ‘oh, by the way,’ he sells the magnets for two hundred dollars. So I went home and I talked to my husband about it. At this point, I had stopped being a smart person. And he just looked at me and said, ‘Listen to yourself. Do you hear what you’re saying?’ It was that moment when I realized how far I’d gone. This was my grief, not my brain. And you can’t think with your grief.”

  For Singer, acceptance of her daughter’s disorder came slowly. “I was convinced that I was never going to be happy again until Jodie was cured. And I believed with all of my soul that it was just a matter of finding the right cure and then she was going to be fine. And then we would all be fine. And slowly I came to realize that it’s a developmental disorder and that she’s going to have challenges her entire life. When she was born, I looked into her beautiful little eyes and thought about her future and all the things we were going to do and all the joy we were going to have. But our lives have been very different. And it took a long time until I accepted that and was able to go back to thinking with my brain. That’s when I finally sought out science-based interventions instead of quackery.”

  Singer doesn’t blame parents. “I think the culpability lies with the quacks who are preying on the desp
eration of families. I think that’s the worst kind of person who would take advantage of a parent or child during a time when they’re grieving. I don’t blame parents for being susceptible to this. I don’t blame them for wanting to believe. You just can’t imagine that there is someone who wants to take advantage of you.”

  In the 1995 movie The American President, Lewis Rothschild pleads with President Andrew Shepherd to counter the attacks of his rival, Bob Rumson. Rothschild is angry that Rumson is the only one offering answers to America’s problems.

  SHEPHERD: Look, if people want to listen to [Rumson] …

  ROTHSCHILD: They don’t have a choice! Bob Rumson is the only one doing the talking! People want leadership, Mr. President, and in the absence of genuine leadership, they’ll listen to anyone who steps up to the microphone. They want leadership. They’re so thirsty for it they’ll crawl through the desert toward a mirage, and when they discover there’s no water, they’ll drink the sand.

  SHEPHERD: Lewis, we’ve had presidents who were beloved who couldn’t find a coherent sentence with two hands and a flashlight. People don’t drink the sand because they’re thirsty. They drink the sand because they don’t know the difference.

  Alternative healers who promote secretin or spinal manipulations or hyperbaric oxygen chambers or ion-rearranging machines to treat autism are selling sand. They do it because of a misguided belief that their therapies work; they do it because it’s lucrative; they do it because responsible advocacy organizations haven’t stepped forward; and they do it because some parents don’t know—or prefer not to know—the difference. Nothing is more contemptible than a clinician who takes advantage of loving parents by raiding their life savings.

  For children with diseases like diabetes, bacterial meningitis, and lymphoma, medicine offers cures like insulin, antibiotics, and chemotherapy. Not so with autism. McCarthy’s treatments are seductive, in part, because medicine offers so little. (In her books, McCarthy promotes 260 chiropractors, naturopaths, dentists, doctors, and nurses who sell autism cures.) But the problem with McCarthy’s campaign isn’t only that her therapies don’t work; it’s that they might do harm. Children have died from medicines that bind heavy metals or suffered perforated eardrums in hyperbaric oxygen chambers or bone thinning from casein-free diets. Perhaps worst of all are the children who have suffered from McCarthy’s very public denouncement of vaccines.

  Before vaccines, Americans could expect that every year diphtheria would kill fifteen thousand people, mostly young children; rubella (German measles) would cause as many as twenty thousand babies to be born blind, deaf, or mentally disabled; polio would permanently paralyze fifteen thousand children and kill a thousand; mumps would be a common cause of deafness; and a bacterium called Haemophilus influenzae type b (Hib) would cause hundreds of children to die of suffocation from epiglottitis—no different than being smothered by a pillow. In the developed world, vaccines have completely or virtually eliminated these diseases.

  Although acupuncturists, chiropractors, naturopaths, and homeopaths all come from different places in history—and offer therapies based on different philosophies—the one place they all seem to come together is vaccines, which they uniformly disdain. It’s hard to know why. Maybe it’s because it distinguishes them from their competition (mainstream doctors). Or maybe it’s because they think vaccines are unnatural (although it’s hard to make a case that coffee enemas are natural). Or maybe it’s all part of the countercultural playbook (you’re either on the bus or off the bus). Whatever the reason, it’s done a lot of harm. And although most alternative healers don’t have much national appeal, Oprah does. And when Oprah gave credence to McCarthy’s anti-vaccine message, it had an effect. During the past few years, Americans have witnessed an increase in hospitalizations and deaths from diseases like whooping cough, measles, mumps, and bacterial meningitis, because some parents have become more frightened by vaccines than by the diseases they prevent.

  7

  Chronic Lyme Disease: The Blumenthal Affair

  It is absurd that the administration of a modern state should be left to men ignorant of science.

  —Frederick Soddy, British chemist

  Movie and television stars aren’t the only celebrities offering medical advice. Politicians have also weighed in.

  On February 11, 2009, Lawrence Gostin and John Kraemer, law professors at Georgetown University, published a paper in the Journal of the American Medical Association. Typically, JAMA publishes papers written by doctors and scientists, not lawyers. But this was an unusual case. “Medical science,” they wrote, “and the health of patients who depend on it, are too important to be subjected to political ideologies.” Gostin and Kraemer were referring to the inexplicable actions of Richard Blumenthal, attorney general of Connecticut. Blumenthal had tried to bully a medical society into creating a disease.

  It wasn’t the first time a politician had politicized science.

  In 1977, Dan Burton, a Republican congressman from Indiana, stood proudly on the steps of the state capitol to announce that Indiana citizens should ignore FDA warnings and use laetrile as they pleased. Ten years later, Burton disagreed with the FDA again, this time for banning ephedra, a weight-loss product that had caused psychosis, hallucinations, paranoia, depression, irregular heartbeats, and strokes in hundreds of people. One, a thirty-four-year-old man who had taken ephedra for ten days, had jumped out of a second-story window to escape imagined attackers. Another, Steve Bechler, a pitcher for the Baltimore Orioles, had died less than twenty-four hours after taking the drug. But Burton was adamant. He accused the FDA of “harboring a culture of intimidation and sometimes harassment against alternative cures.”

  Burton’s ignorance wasn’t limited to cancer and weight control. When AIDS began spreading across the United States in the 1980s, he became obsessed with the disease, bringing his own scissors to the barbershop and refusing to eat soup in restaurants because he was unsure who was preparing his food. Later, he introduced (unsuccessful) legislation mandating HIV testing for every American.

  But Dan Burton’s greatest contribution to the science of the absurd came in the early 2000s, when he sponsored a series of congressional hearings that offered a platform to Andrew Wakefield, a British surgeon who had claimed that the measles-mumps-rubella vaccine caused autism. Wakefield’s star didn’t shine long. First, study after study failed to confirm his theory. Then a British journalist named Brian Deer found that Wakefield had received £440,000 from a legal services commission (a conflict of interest Wakefield had neglected to mention to his co-authors) and that some of his clinical and biological data had been questioned (causing the journal to retract the paper). Eventually, Andrew Wakefield was struck off the medical register in the United Kingdom—no longer able to practice medicine. But during Wakefield’s fall, Burton never relented, continuing his public assault on MMR. As a consequence, parents of more than a hundred thousand American children chose not to give the vaccine. The results were predictable. In 2008, measles outbreaks were greater than in any year in more than a decade. In Europe, where Wakefield’s claims stoked similar fears, thousands of children were infected, and at least thirteen died from measles, a preventable illness.

  Incidentally, Burton was carrying on a time-honored Indiana tradition of trying to legislate bad science. On January 18, 1897, Indiana state representative Taylor I. Record argued in favor of changing the value of pi. Pi, which can be rounded to 3.14159, is the ratio of a circle’s circumference to its diameter. Tyler believed that the number was inconveniently long; in House Bill 246, he asked that it be rounded up to 3.2. The bill passed the House but was defeated in the Senate when the chairman of Purdue University’s math department successfully pleaded that it would make Indiana a national laughingstock. The value of pi in Indiana remains the same as in every other state.

  But it was Attorney General Richard Blumenthal who took political shenanigans to a new level. Blumenthal tried to legislate a disease, Chronic Lyme
, into existence.

  In November 1975, Polly Murray, a mother of four living in Old Lyme, Connecticut, called the state health department to report twelve children who had suddenly suffered swelling, redness, and tenderness in their joints (arthritis). All lived in her small community of five thousand people, four on the same road. The doctors said it was juvenile rheumatoid arthritis (JRA), an autoimmune disease caused by the body’s reacting against itself. To Polly Murray, this didn’t make sense: how could an autoimmune disease cause an outbreak?

  Polly wasn’t alone. Later, another mother from the same community called the Yale rheumatology clinic to report that she, her husband, two of her children, and several neighbors had suddenly developed arthritis. Again, all were said to have JRA.

  The task of deciphering the events in Old Lyme fell to a young postdoctoral fellow in Yale School of Medicine’s rheumatology division, Allen Steere. Steere studied fifty-one victims of the disease—thirty-nine of whom were children. He agreed with Polly Murray: not in keeping with JRA, these cases were seasonal, involved only one joint, were associated with an unusual rash, and occurred in an unlikely number of people in one town in one summer, 10 percent of whom lived on one of four roads. Given the prevalence of JRA in the United States, the chance of that happening was 100 to 1.

  In January 1977, Steere and his coworkers published a paper that gave the disease its name: “Lyme Arthritis.” Steere didn’t know what was causing the disease, but he had a sense of how it was transmitted: “The geographical clustering of the patients in more sparsely settled, heavily wooded areas rather than in town centers or along the shore [and] the peak occurrence in summer months are best explained by transmission of an agent by an arthropod vector.” The most common arthropods in the woods of Old Lyme are ticks, fleas, spiders, and mosquitoes.