Killing Us Softly

by Dr Paul Offit

  To all the science writers, science advocates, and science bloggers who have dared proclaim that the emperors of pseudoscience have no clothes

  When religion was strong and science weak,

  men mistook magic for medicine.

  Now, when science is strong and religion weak,

  men mistake medicine for magic.

  —THOMAS SZASZ

  Contents

  Title Page

  Dedication

  Epigraph

  Prologue: Taking a Look at Alternative Medicine

  Introduction: Saving Joey Hofbauer

  Part I: Distrust of Modern Medicine

  1. Rediscovering the Past: Mehmet Oz and His Superstars

  Part II: The Lure of All Things Natural

  2. The Vitamin Craze: Linus Pauling’s Ironic Legacy

  Part III: Little Supplement Makers Versus Big Pharma

  3. The Supplement Industry Gets a Free Pass: Neutering the FDA

  4. Fifty-One Thousand New Supplements: Which Ones Work?

  Part IV: When the Stars Shine on Alternative Medicine

  5. Menopause and Aging: Suzanne Somers Weighs In

  6. Autism’s Pied Piper: Jenny McCarthy’s Crusade

  7. Chronic Lyme Disease: The Blumenthal Affair

  Part V: The Hope Business

  8. Curing Cancer: Steve Jobs, Shark Cartilage, Coffee Enemas, and More

  9. Sick Children, Desperate Parents: Stanislaw Burzynski’s Urine Cure

  Part VI: Charismatic Healers Are Hard to Resist

  10. Magic Potions in the Twenty-First Century: Rashid Buttar and the Lure of Personality

  Part VII: Why Some Alternative Therapies Really Do Work

  11. The Remarkably Powerful, Highly Underrated Placebo Response

  12. When Alternative Medicine Becomes Quackery

  Epilogue: Albert Schweitzer and the Witch Doctor: A Parable

  Notes

  Selected Bibliography

  Acknowledgments

  About the Author

  Also by Dr Paul Offit

  Copyright

  About the Publisher

  PROLOGUE

  Taking a Look at Alternative Medicine

  People love alternative medicine. They go to their acupuncturist or chiropractor or naturopath to relieve pain. They take ginkgo for memory or homeopathic remedies for the flu or megavitamins for energy or Chinese herbs for potency or Indian spices to boost their immune systems. Fifty percent of Americans use some form of alternative medicine; 10 percent use it on their children. It’s a $34-billion-a-year business. In the EU, alternative remedies are also popular; more than 100 million people use them. My friends are no different. One uses cold laser therapy for his allergies, another takes a homeopathic remedy named oscillococcinum to cure her colds, and a third swears that acupuncture is the only thing that relieves his back pain.

  Furthermore, alternative medicine—which in the 1960s was denigrated as fringe or unconventional medicine—has entered the mainstream. Hospitals have dietary supplements on their formularies or offer Reiki masters to cancer patients or teach medical students how to manipulate healing energies. In 2010, a survey of six thousand hospitals found that 42 percent offered some form of alternative therapies. When asked why, almost all responded, “patient demand.” In the United Kingdom, five homeopathic hospitals work within the National Health Service. Big Pharma is also jumping in. On February 27, 2012, Pfizer acquired Alacer Corporation, one of the country’s largest manufacturers of megavitamins.

  The reason alternative therapies are popular is simple. Mainstream doctors are perceived as uncaring and dictatorial, offering unnatural remedies with intolerable side effects. Alternative healers, on the other hand, provide natural remedies instead of artificial ones, comfort instead of distance, and individual attention instead of take-a-number-and-wait-your-turn inattention.

  Like many people who have spent time in today’s health-care system, my experiences have been largely disappointing.

  I was born with clubfeet. Within hours, both feet were put in casts; the left foot healed; the right didn’t. When I was five years old, a surgical procedure was performed on my right foot; one of the first of its kind, my case was later written up in a medical journal. The good news is that my right foot no longer turns awkwardly down and inward. The bad news is that walking is always somewhat painful for me.

  While in medical school, I volunteered for a twenty-five-mile walkathon for the National Multiple Sclerosis Society. After completing the walk, the pain in my foot was so bad I had to use crutches for a few days. I visited an orthopedist, who told me I had severe osteoarthritis and that my X-ray looked like that of a seventy-year-old man. I was twenty-four. For most of my adult life, I’ve tried conventional nonnarcotic pain medicines without relief.

  When I was in my thirties, I noticed a small dark spot—no bigger than the head of a pin—on the front of my nose. I ignored it. Twelve years later, my wife suggested I have it removed. The procedure was fast and painless. But a few days later, the dermatologist called with some bad news. He had received a report from the pathologist. The diagnosis: metastatic malignant melanoma. A death sentence.

  I panicked and immediately called the pathologist. “This diagnosis doesn’t make any sense,” I pleaded. “How could I have a metastatic lesion on only one part of my body that has remained unchanged for more than a decade? And where’s the primary cancer, the place from which the metastasis had supposedly spread? Doesn’t this make me the longest-living survivor of untreated metastatic melanoma in history?!” The pathologist was sympathetic but unfazed. The diagnosis was what it was. If I wanted her to, however, she was willing to send my biopsy to the nation’s foremost expert on melanoma: a dermatopathologist in New York City. A few weeks later, he called with his diagnosis: metastatic malignant melanoma. He patiently explained that, given where the malignant cells were and what they looked like, it couldn’t be anything else.

  For the next two years, I went to the dermatology clinic at the University of Pennsylvania, getting periodic physical examinations, chest X-rays, and blood tests looking for evidence of further metastases. None were found. Also, no one could find the original site from which my melanoma had supposedly spread. A mystery, they claimed.

  Later, my wife, who is also a doctor, sent my biopsy to a dermatologist friend of hers, who said that I didn’t have malignant melanoma—my real diagnosis was cutaneous blue nevus syndrome, a benign disorder that mimics melanoma. I was happy to be done with it. But two years of thinking that I was suffering from a fatal illness had been hell.

  When I was in my early fifties, a sharp, persistent pain in my left knee made it difficult to walk. Unable to tolerate it any longer, I visited an orthopedist, who diagnosed a partially torn medial meniscus (the cartilage in the knee that keeps bone from rubbing against bone). The surgery will be simple, he explained, with a full recovery in a few days. But in the postoperative haze of anesthesia, I learned that it hadn’t been that easy. The orthopedist explained that my problem wasn’t a torn meniscus after all; it was a loss of cartilage behind my kneecap. Instead of minor knee surgery, I had just undergone microfracture surgery, where small holes are drilled into bone. The recovery wasn’t going to be a few days—it was going to be a year. The miscalculation didn’t seem to surprise or upset the orthopedist. But it upset me.

  By my mid-fifties, consistent with my age, I began to suffer symptoms of an enlarged prostate. Now I was in the world of urologists, which meant I would periodically get my PSA level checked. PSA, or prostate-specific antigen, is supposedly a predictor of prostate cancer. But the more I read studies about PSA, the more I realized it isn’t a very good predictor at all. Even biopsies of the prostate are confusing. As i
t turns out, most men with prostate cancer die with the cancer, not from it. Which means that most men with prostate cancer have needless surgery. And the surgery is brutal, leaving many incontinent and impotent. As a consequence, urologists have varying opinions about how to avoid prostate cancer.

  During these misadventures, I’ve gotten a lot of advice from a lot of people. Some have gone as far as to suggest I abandon conventional medicine. They said I should take saw palmetto for my prostate and chondroitin sulfate and glucosamine for my foot and knee pain—all readily available without a prescription. They told me that I shouldn’t have seen an orthopedist—I should have seen an acupuncturist or a chiropractor—and that I shouldn’t have gone to a urologist for prescription drugs: I should have gone to a naturopath for something more organic, more natural. They urged me to stop being so trusting of modern medicine and to once and for all take control of my health—to leave a system that was clearly flawed.

  So I went to a health food store and bought saw palmetto, chondroitin sulfate, and glucosamine. But before I took them, I looked to see whether studies had been done showing they worked. The studies were large, internally consistent, well controlled, and rigorously performed. And the results were clear: saw palmetto didn’t shrink prostates, and chondroitin sulfate and glucosamine didn’t treat joint pain. Then I reviewed studies of acupuncture, naturopathy, homeopathy, and megavitamins, which also showed results far less amazing than my friends had led me to expect. Some therapies worked; most didn’t. And for those that did work, it was how they worked that was surprising.

  Perhaps most concerning, I found that alternative therapies could be quite harmful. Chiropractic manipulations have torn arteries, causing permanent paralysis; acupuncture needles have caused serious viral infections or ended up in lungs, livers, or hearts; dietary supplements have caused bleeding, psychosis, liver dysfunction, heart arrhythmias, seizures, and brain swelling; and some megavitamins have been found to actually increase the risk of cancer. My experience wasn’t limited to reading medical journals. As head of the therapeutic standards committee at our hospital, I learned of one child who suffered severe pancreatitis after taking more than ninety different dietary supplements and another whose parents insisted on using an alternative cancer cure made from human urine.

  What I learned in all of this was that, although conventional therapies can be disappointing, alternative therapies shouldn’t be given a free pass. I learned that all therapies should be held to the same high standard of proof; otherwise we’ll continue to be hoodwinked by healers who ask us to believe in them rather than in the science that fails to support their claims. And it’ll happen when we’re most vulnerable, most willing to spend whatever it takes for the promise of a cure.

  The purpose of this book is to take a critical look at the field of alternative medicine—to separate fact from myth. Because the truth is, there’s no such thing as conventional or alternative or complementary or integrative or holistic medicine. There’s only medicine that works and medicine that doesn’t. And the best way to sort it out is by carefully evaluating scientific studies—not by visiting Internet chat rooms, reading magazine articles, or talking to friends.

  INTRODUCTION

  Saving Joey Hofbauer

  They were small

  And could not hope for help and no help came.

  —W. H. Auden, “The Shield of Achilles”

  My first exposure to alternative medicine came by way of a story that circulated during my pediatric residency in the late 1970s. It involved a popular alternative cancer remedy called laetrile. Some might read what follows and feel assured it could never happen today—that no parent would ever do such a thing. But every single influence that drove these parents to do what they did is still very much alive, arguably even more so than it was then.

  The story concerns a little boy from upstate New York.

  On October 5, 1977, Joey Hofbauer complained to his mother about a lump on his neck. When the lump didn’t go away, she took him to their family doctor, Denis Chagnon, who prescribed penicillin, without effect. When the lump got bigger, Chagnon referred Joey to an ear, nose, and throat specialist, Dr. Arthur Cohn, who, on October 25, biopsied it at St. Peter’s Hospital, in Albany. Two days later, Cohn had his diagnosis: Hodgkin’s disease, a cancer of the lymph glands. Joey was seven years old.

  Although the news was devastating, Joey’s prognosis was excellent. By the early 1970s, investigators had proved that radiation and chemotherapy offered Joey a 95 percent chance of recovery—with proper treatment, Joey could live a long and fruitful life. But for Joey Hofbauer, the road to recovery wasn’t going to be easy. Within weeks, a battle erupted over how Joey should be treated and by whom. On one side were Joey’s parents, citizen activists, the media, the John Birch Society, and a movie star. On the other were cancer specialists, Senator Edward Kennedy, the Saratoga County Department of Social Services, and the Food and Drug Administration (FDA). The battle lasted three years.

  When he learned that Joey had Hodgkin’s disease, Arthur Cohn advised the Hofbauers to see a cancer specialist. The specialist would determine the extent of Joey’s cancer by taking biopsies of the liver and spleen. Then Joey would receive radiation and chemotherapy—medicines like procarbazine, prednisone, vincristine, and nitrogen mustard. Cohn reassured the Hofbauers that their son had an excellent chance of survival. But John and Mary Hofbauer weren’t reassured. They heard words like radiation and chemotherapy, and it scared them, conjuring up images of hair loss, vomiting, diarrhea, anemia, and worse. Certainly there was a better way to treat their son—a more natural way. So they rejected Cohn’s advice and signed Joey out of St. Peter’s Hospital. On November 8, the Hofbauers flew their son to the Fairfield Medical Center, in Montego Bay, Jamaica, to receive a remedy they believed was far gentler, far kinder, and far more reasonable than those recommended by Dr. Cohn: laetrile, a natural remedy made from apricot pits.

  The day the Hofbauers flew to Jamaica, Denis Chagnon wrote a letter: “Dear Mr. and Mrs. Hofbauer, I have repeatedly asked for the name and address of a physician to whom I can send [Joey’s] records. I spoke with Mrs. Hofbauer in the morning hours of Friday, November 4th, and again on Monday, November 7th, and was not provided with an answer. Without treatment [Hodgkin’s] disease is oftentimes fatal. I ask you again to provide me with the name and address of his present physician [to] ensure that [Joey] is being properly cared for. If this is not provided by noon, Thursday, November 10th, the following action will be taken: notification of the State Health Department, the Children’s Protective Agency, and the American Cancer Society.” When the Hofbauers left for Jamaica, Chagnon carried out his threat, reporting them to child services. On November 9, the Department of Social Services of Saratoga County, New York, charged John and Mary Hofbauer with neglect, seeking to remove Joey from the home. The law was clear: “The State, under appropriate circumstances, may provide medical care for a minor where the parent or guardian fails to do so.”

  On November 23, the Hofbauers returned from Jamaica. Because written and telephone correspondence had been ignored, on November 29, Richard Sheridan and Diana Fenton, from the Department of Social Services—accompanied by an armed sheriff’s deputy—visited the Hofbauers. Sheridan remembered what happened next: “[Mr. Hofbauer said] that we weren’t going to take his child away unless the Sheriff’s deputy drew his gun and arrested him.” Sheridan told Hofbauer that the state of New York was now in charge of Joey’s care. “I told him there was a [hearing],” recalled Sheridan, “and he said it was illegal because he wasn’t there. I said that this was not the place to be talking about this, and Mr. Hofbauer yelled very loudly that it was the place to be talking about this, and he wanted everybody to know that we were coming to take his son.” Hofbauer was convinced that cancer specialists would only harm Joey. “He said I wanted to take his son and poison [him],” said Sheridan. “He said ‘Do you know what chemotherapy is? It’s nitrogen mustard gas. It was declared illegal in the
wars.’”

  When the dust settled, the Hofbauers relented. Through their lawyer, they worked out a deal. Joey would be taken to St. Peter’s Hospital with an understanding that no diagnostic tests would be performed and no treatment would be administered—at least not until the case could be heard in family court. Joey stayed at St. Peter’s from November 29 to December 9. But John Hofbauer couldn’t watch silently while his son was denied what he believed was a lifesaving medicine. So he secretly gave Joey several doses of laetrile until “we were threatened with armed guards at the door, at which time we desisted.”

  In December 1977, the case of Joey Hofbauer was referred to Saratoga Family Court judge Loren N. Brown, who, much to the dismay of child services, agreed to let the Hofbauers treat their son with laetrile for six months. On one condition: they had to find a licensed physician willing to do it. “I had a situation where I had to find a doctor in a hurry,” recalled Hofbauer, “because everybody was demanding to know who my doctor was.” First, Hofbauer asked Dr. Milton Roberts, in Westchester County. But Roberts worried the case had become “too hot to handle,” so he turned him down. Then Hofbauer asked Michael Schachter, a psychiatrist from Nyack, New York. Schachter agreed, but only if the Hofbauers signed a consent form releasing him of all responsibility: “I agree to undergo care with Michael B. Schachter, MD,” it began. “I understand [that] among the substances, medications, or drugs available [laetrile] may be advised for the purpose of metabolic support. The predominant medical view, including that of the Food and Drug Administration (FDA) and the American Medical Association (AMA) is that this substance [has] no known value [for] the treatment of any disease … I understand that some alleged authorities associated with the FDA and AMA assert that the use of this substance constitutes quackery and amounts to a hoax on the American public. I further understand that American physicians have been indicted in California for the use of this substance. I understand that Dr. Michael Schachter [is] not a cancer specialist and [has] no direct experience with the orthodox cancer therapy modalities of chemotherapy, radiation or surgery [and is] not in a position to advise me as to the relative benefits and risks of those treatments for my condition.” On December 14, John and Mary Hofbauer signed Michael Schachter’s consent form.