Killing Us Softly (2 page)

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.

They were small

And could not hope for help and no help came.

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

M
y 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.

O
n 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.

W
hen 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.

Six months later, in June 1978, the court would reconvene to see whether laetrile was working and to determine who would care for Joey Hofbauer: his parents or the state.

M
ichael Schachter didn't limit his therapy to laetrile. For the next six months, he also gave Joey raw milk, raw liver juice, cod liver oil, soft-boiled eggs, Staphylococcus phage lysate (staph bacteria infected with a virus), pancreatic enzyme enemas (which partially dissolve the lining of the colon), massive doses of vitamin A (which cause blurred vision, bone pain, and dizziness), a vaccine to prevent
“Progenitor cryptocides”
(a bacterium believed by a physician named Virginia Livingston to cause all cancers), a vegetarian diet, daily coffee enemas made by adding three heaping tablespoons of regular coffee to one quart of water (coffee enemas had already caused two deaths), seven injections of an “autogenous vaccine” (made from bacteria in Joey's urine), and Wobe-Mugos enzymes (a combination of several pancreatic enzymes obtained from pigs). None of these therapies had been approved for use in people, and all were arguably in violation of New York State laws on human experimentation. A cancer specialist who later testified at Joey's trial called it “a witch doctor's diet.”

In June, six months into Joey's unconventional treatments, the Saratoga County Department of Social Services, Dr. Michael Schachter, and several cancer specialists appeared before Judge Brown to determine whether Joey's alternative cancer cures were working. Most damning was the testimony of John Horton, a professor of medicine at Albany Medical College and a board-certified cancer specialist, who had recently examined Joey. “On feeling the left side of the neck there was a [large] lymph node under the angle of the jaw,” he said, “and just below
that another [large] lymph node [and] a string of lymph nodes coming down the neck as far as the clavicle [collarbone].” At the time of his diagnosis, Joey Hofbauer had had one swollen lymph gland; now he had seventeen. Dr. Anthony Tartaglia, a board-certified hematologist and chief of medicine at St. Peter's Hospital, had also examined Joey. “There is no question in my mind that the extent of Hodgkin's disease in [Joey] is much greater than when I examined him in December,” he said. Tartaglia added that the laetrile that Joey had received was the “equivalent of not getting any treatment.”

There were other worrisome signs. Tests showed that Joey had liver damage, most likely caused by dangerously high doses of vitamin A. Also, Schachter apparently didn't realize that Joey's “occasional nausea and abdominal cramps” were probably caused by cyanide poisoning from large doses of laetrile, having never obtained blood cyanide levels to check it out.

Unlike the cancer specialists who had examined Joey, Michael Schachter believed his program was working. “I think he is doing very, very well,” he said. “I'm just not as concerned about these lymph nodes in the neck as the other physicians. I feel that [laetrile and metabolic therapy] will be playing a major role in the way medicine is practiced over the next five to ten to fifteen years and consequently I would say that his treatment has been more than adequate, it has been superior.” The Hofbauers brought in their own experts—specifically, laetrile promoter Hans Hoefer-Janker; laetrile's inventor, Ernest Krebs Jr.; and Marco Brown, who ran the Fairfield Medical Center, in Jamaica. On July 5, Judge Brown ruled in favor of the parents, stating that they were “concerned and loving” and that Dr. Schachter was “duly licensed.”

Although the cancer had spread into his neck, Joey was in the early stages of Hodgkin's disease. And the Saratoga Department of Social Services wasn't giving up. There was still time. Unfortunately, public sentiment was turning in favor of laetrile, making it harder and harder for Joey to get the medicines he needed to save his life.

B
y the end of the 1970s, laetrile wasn't just a drug; it was a social movement.

Led by Robert Bradford, of Los Altos, California, the John Birch Society—an ultraconservative organization dedicated to eliminating government regulations—founded the Committee for Freedom of Choice in Cancer Therapy. By 1977 the committee claimed five hundred chapters and thirty-five thousand members. Committee members influenced popular television programs like
60 Minutes
, magazines like
Newsweek
, and commentators like James Kilpatrick, all of whom promoted the wonders of laetrile. Almost singlehandedly, they successfully rallied public support for the drug. In 1976, Alaska became the first state to legalize both the manufacture and sale of laetrile; by 1978 fourteen states had followed; by 1979, twenty-one. Most Americans favored the legalization of laetrile; by 1980 it was a billion-dollar-a-year industry. A movement had been born—a movement that would soon include one of the most popular movie stars of the day.

I
n the summer of 1978, Steve McQueen (
The Great Escape
,
The Thomas Crown Affair
,
Bullitt
,
The Towering Inferno
)
suffered from a persistent cough and weight loss. Doctors diagnosed him with bronchitis, then walking pneumonia, then a fungal infection. Eventually a lung biopsy revealed the problem: mesothelioma, an aggressive type of lung cancer. After learning he had cancer, McQueen checked into Cedars-Sinai in Los Angeles to begin radiation and chemotherapy, which didn't work. Doctors told him he had only two months to live. So McQueen took matters into his own hands, choosing to treat himself with laetrile at a clinic in Mexico run by William D. Kelley.

Kelley was a flamboyant, charismatic promoter of alternative therapies. Born in Arkansas City, Kansas, he had studied dentistry at Baylor before setting up a clinic in Fort Worth and later in Grapevine, Texas. There Kelley started a mail-order vitamin business. Like Michael Schachter, Kelley believed nonspecific nutritional therapies could treat cancer. Under the direction of Kelley, McQueen received laetrile, massages, shampoos, megavitamins, nutritional supplements, chiropractic adjustments, a high-fiber diet, sheep embryo shots, enzyme implants, and twice-daily coffee enemas (marketed as Kelley's Koffee)—treatments that cost McQueen ten thousand dollars a month (equivalent to eighty thousand dollars today).