Читать книгу Killing Us Softly: The Sense and Nonsense of Alternative Medicine - Dr Offit Paul - Страница 7

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.

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.

Michael 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.

By 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.

In 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).

Kelley used McQueen’s celebrity to promote laetrile. Appearing on the national television show Tomorrow, hosted by Tom Snyder, he said, “Those doctors gave him no hope. But his chances are excellent. I believe with all my heart that this approach represents the future of cancer therapy. It took Winston Churchill”—one of the first people to be treated with antibiotics—“to popularize antibiotic medicine. Steve McQueen will do the same for metabolic therapy.” McQueen echoed Kelley’s enthusiasm; appearing on Mexican television, he said, “Mexico is showing the world this new way of fighting cancer through nonspecific metabolic therapy. Thank you for saving my life. God bless you all.”

The John Birch Society’s manipulation of the media and the celebrated case of Steve McQueen influenced public opinion. Laetrile had moved into the mainstream. On December 14, 1978, the Saratoga County Department of Social Services appealed Judge Brown’s ruling of six months earlier. The case went before Judge Sweeney of New York’s Third District Court of Appeals, who reaffirmed the earlier decision: “We are of the view that there is ample proof to support the findings and determination of [Judge Brown’s] trial court.”

Joey Hofbauer would continue to be treated by Michael Schachter.

The Saratoga County Department of Social Services still had one more appeal—one more chance to save Joey Hofbauer’s life. The decision would be made on July 10, 1979. Fortunately for Joey Hofbauer, several events had been set in motion that would soon reduce the public’s desire for laetrile. But Joey was getting sicker; the clock was ticking.

On May 26, 1977, Franz Ingelfinger, the distinguished editor of the New England Journal of Medicine, published an editorial titled “Laetrilomania.” Ingelfinger wrote, “As a cancer patient myself, I would not take Laetrile under any circumstances. If any members of my family had cancer, I would counsel them against it. If I were still in practice, I would not recommend it to my patients.” Despite his personal feelings, Ingelfinger suggested a definitive study—one that would settle the argument once and for all. In December 1979, the FDA granted an “investigational new drug” license for laetrile, opening the door for a study. This was the first time in the history of the United States that the FDA had approved human testing of a cancer drug that had never been shown to work in experimental animals.

While researchers were designing Ingelfinger’s laetrile study, other events were working on Joey’s behalf. In July 1977, Senator Edward Kennedy of Massachusetts held a hearing to discuss the value of laetrile. Testifying in favor of the drug were San Francisco physician and laetrile proponent John Richardson, John Bircher Robert Bradford, and laetrile inventor Ernest Krebs Jr. Kennedy didn’t buy it, saying, “There isn’t a scintilla of evidence that [laetrile] provides any sense of hope in curing or preventing cancer.” During the hearing, representative Terrence McCarthy of Massachusetts was less politic. “The people selling laetrile are crooks, liars, and thieves,” he said.

Unfortunately, clear statements by the editor of the New England Journal of Medicine and Senator Edward Kennedy didn’t convince the courts that Joey Hofbauer had received inadequate care. On July 10, 1979, in response to the Saratoga County Department of Social Services’ final appeal, Judge Jasen ruled that he was “unable to conclude, as a matter of law, that Joseph’s parents [had] not undertaken reasonable efforts to ensure that acceptable medical treatment is being provided their child.” It was Joey Hofbauer’s last chance to receive the radiation and chemotherapy he needed. Jasen still considered laetrile, coffee enemas, pancreatic enzymes, and a “vaccine” made from bacteria in Joey’s urine to be “acceptable medical treatment.”

On July 10, 1980, ten-year-old Joey Hofbauer died of Hodgkin’s disease, his lungs riddled with cancer. Although Michael Schachter acknowledged that Hodgkin’s disease had killed Joey, he claimed partial success. “Most of the body was either free of Hodgkin’s or minimally involved,” he said.

Four months later, America’s most celebrated standard-bearer for laetrile, Steve McQueen, also died. After McQueen’s appearance on Mexican television, Cliff Coleman, a longtime friend, had paid him a visit. “I walked over and there was this skinny old man,” recalled Coleman. “No more than a skeleton with dark eyes and a matted beard, sitting swallowed up in an armchair.” McQueen told Coleman, “I can’t take it anymore.” One month later, McQueen was taken to a medical clinic in El Paso, Texas, where tests showed that cancer had spread from his lungs to his abdomen, liver, and pelvis. Within a few days, on November 7, 1980, during surgery to remove a massive abdominal tumor, Steve McQueen died of a heart attack.

One year after the deaths of Joey Hofbauer and Steve McQueen, cancer specialist Charles Moertel, of the Mayo Clinic in Rochester, Minnesota, led research teams at UCLA, the University of Arizona, and the Memorial Sloan-Kettering Cancer Center, in New York, in the clinical trial proposed by Franz Ingelfinger. They treated 178 cancer victims with laetrile and high doses of vitamins, finding that the combination didn’t cure, improve, or stabilize cancers. “Patients died rapidly, with a median survival of only 4.8 months,” they wrote. “It must be concluded that Laetrile [is] of no substantive value in the treatment of cancers. Further investigation or clinical use of such therapy is not justified.” Researchers also found that several patients had suffered symptoms of cyanide poisoning from laetrile. Within a year of the publication, laetrile sales dropped dramatically. In 1987, the FDA banned the sale of laetrile. (It can still be obtained from clinics in Mexico or illegally from the Internet. In recent years, more websites have appeared promoting the drug.)

In retrospect, the last best chance to save Joey Hofbauer had occurred in one court and one court only: Judge Loren Brown’s family court. This was the only time that cancer specialists had testified. Lawyers working on behalf of Joey had done their homework. The doctors and scientists presented by the state had published hundreds of papers, written book chapters on Hodgkin’s disease, chaired professional societies, headed research teams showing the value of radiation and chemotherapy, performed studies in experimental animals showing that laetrile didn’t work and was dangerous, or headed the FDA’s section on cancer treatments. They were, in short, the brightest, most accomplished members of their field.

The doctors and scientists offered by the Hofbauers also shared several characteristics: none were board-certified in oncology, hematology, or toxicology; none had ever published a paper in a medical journal; none had shown any reasonable evidence that their therapies worked; and most didn’t even have hospital privileges. That Brown could rule in favor of the Hofbauers’ choice to deny their son a proven, effective therapy is unconscionable. But an explanation can be found in the record of the trial. In the section titled “Findings of Fact and Conclusion of Law,” Brown wrote, “This court finds that metabolic therapy has a place in our society, and, hopefully, its proponents are on the first rung of a ladder that will rid us of all forms of cancer.” Brown believed that his small family court in Saratoga County had witnessed a miracle—a breakthrough that would soon turn cancer therapy on its ear. To Judge Brown, the notion that laetrile and coffee enemas could treat Joey Hofbauer wasn’t a matter of opinion; it was a “Finding of Fact.”

There was another force working against Joey Hofbauer in Judge Brown’s courtroom that day—a force far more powerful than clinicians like Michael Schachter or laetrile promoters like Ernest Krebs Jr. or ideologues like Robert Bradford. It was revealed during an exchange between the Hofbauers’ lawyer, Kirkpatrick Dilling, and Victor Herbert, a cancer specialist. Dilling was questioning Herbert about the value of bonemeal.

DILLING: Calcium, is that an essential nutrient?

HERBERT: Yes.

DILLING: Are you familiar with the fact that bonemeal is very high in calcium?

HERBERT: I’m familiar with the fact that bonemeal is a dangerous quack remedy because of its lead content and people have died from being given bonemeal instead of calcium properly in milk and milk products.

DILLING: Isn’t bonemeal widely available?

HERBERT: Certainly is, your organization pushes it.

Dilling froze. His organization? Herbert had revealed something that wasn’t evident to most in the courtroom that day—exactly who was paying for the Hofbauers’ defense. Recovering, Dilling went on the offensive. “I want to state for the record,” he said, “that I’m proud to represent the National Health Federation and I would appreciate it if the witness would keep his views to himself.”

The National Health Federation (NHF) is an organization that represents the financial interests of the alternative medicine industry. At the time of Joey’s trial, these therapies had become quite lucrative. Kirkpatrick Dilling was general counsel to the NHF. Against these powerful financial interests, Joey Hofbauer didn’t have a chance.

Michael Schachter was never held accountable for his treatment of Joey Hofbauer. On the contrary, since Joey’s death Schachter has thrived, directing the Schachter Center for Complementary Medicine, in Suffern, New York. In 2010, a promotional brochure claimed he “has successfully treated thousands of patients using orthomolecular psychiatry, nutritional medicine, chelation therapy for cardiovascular disease, and alternative cancer therapies.”

Joey Hofbauer’s story, while extreme, contains much of what attracts people to alternative therapies today: a heartfelt distrust of modern medicine (John and Mary Hofbauer didn’t believe the advice of hematologists and oncologists); the notion that large doses of vitamins mean better health (Joey was given massive doses of vitamin A, which was likely to have been to his detriment); the belief that natural products are safer than conventional therapies (the Hofbauers preferred laetrile, pancreatic enzymes, coffee enemas, and raw liver juice to radiation and chemotherapy); the lure of healers whose charisma masks their lack of expertise (Michael Schachter, a psychiatrist, convinced the Hofbauers he could cure their son, even though he had no expertise treating cancer); the power of celebrity endorsements (Steve McQueen was one of the most popular movie stars of his day); and, perhaps most of all, the unseen influence of a lucrative business (Kirkpatrick Dilling’s NHF, still active today, is one of many lobbying groups that have influenced Congress to offer special protections to the fourteen hundred companies that manufacture alternative remedies in the United States).