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There is an old saying: "The highwayman demands 'your money OR your life,' but quacks demand 'your money AND your life!'" This statement is particularly true when it comes to dubious cancer treatment. The harm done by quackery may be categorized as economic, direct, indirect, psychological and societal.
The amount of money wasted on cancer quackery is unknown but probably exceeds one billion dollars per year -- the amount spent for cancer research. The financial impact upon individuals and families can be catastrophic if they fall into the trap of heroically "leaving no stone unturned" in their quest for a remedy in hopeless cases. Some quacks are quite willing to bleed them dry financially. I know of cases in which survivors were deprived of the family's savings, were left with a large mortgage on a previously paid-for home, or even lost their home.
Dubious therapies can cause death, serious injury, unnecessary suffering, and disfigurement. Cyanide poisoning from ingesting apricot pits or laetrile, Salmonella dublin infection from drinking raw milk, electrolyte imbalance caused by coffee enemas, internal bleeding from deep body massage, and brain damage from whole-body hyperthermia have all caused needless death of cancer patients. At clinics providing substandard care, intravenous infusions of various concoctions have caused septicemia and malnutrition. And the application of escharotics (corrosive chemicals) to the skin of cancer patients has resulted in needless disfigurement.
Ruth Conrad, an Idaho woman, had a horrible experience as a result of consulting one of the state's many unlicensed naturopaths. While seeking treatment for a sore shoulder, she also complained of a bump on her nose. The naturopath stated that it was cancer and gave her a black herbal salve to apply directly. Within a few days, her face became very painful and she developed red streaks that ran down her cheeks. Her worried phone call to the naturopath brought the explanation that the presence of the lines was a good sign because they "resemble a crab, and cancer is a crab." He also advised her to apply more of the black salve. Within a week, a large part of her face, including her nose, sloughed off. It took three years and 17 plastic surgical operations to reconstruct her face.
Mrs. Conrad's experience illustrates another aspect of cancer quackery -- fake diagnosis. She never had cancer in the first place. In addition to suffering direct harm from a caustic treatment, she also suffered the mental anguish of thinking she had a dread disease.
Some of the worst quackery-related tragedies result from delay or failure to act. An example of a needless death involved an Oregon man who treated his basal cell carcinoma of the mouth with a mail-order remedy for 15 years. What makes this case especially tragic is that since this type of cancer almost never metastasizes, he had many years in which to correct his folly. Although badly disfigured by the growing tumor, he continued self-treatment.
Overreliance upon dietary treatment is a common means by which indirect harm kills cancer sufferers. The appeal of dietary remedies is connected to folk medicine. Nearly every culture, beginning with the ancient Egyptians, has believed in the half-truth "you are what you eat." This implies that diseases are caused by faulty diet and, conversely, can be cured by eating the "right" foods. Publicity given to epidemiological speculations about "cancer-prevention diets" encourages the belief that diet holds great promise for both prevention and treatment of cancer. The fact is that, although nutrient deficiencies can cause some diseases and dietary excesses can cause or aggravate several others, the vast majority of diseases do not have a nutritional cause.
One food-as-medicine approach that is popular today is macrobiotics, which received widespread publicity when Anthony Sattilaro, M.D., a Philadelphia physician, concluded that the diet had helped him overcome prostatic cancer. National magazine articles, a book and television appearances spread the belief that macrobiotics had cured his cancer. Although Sattilaro had also undergone conventional therapy, macrobiotics seemed to fulfill some emotional need unmet by regular therapy. He eventually died of his disease, but this fact was not mentioned in the macrobiotic press.
The macrobiotic diet bears some resemblance to currently recommended cancer-prevention diets. However, because of its rigidity, low-fat content, negligible use of simple sugars, and exclusive reliance upon vegetable rather than animal protein, it is a poor one for cancer patients undergoing radiation or chemotherapy. These patients need a high-quality, nutrient-dense diet because the ability of their intestine to absorb nutrients is impaired.
"Natural" treatments that can delay proper care are often advocated by well-meaning friends and relatives who are culturally conditioned to believe in their value. This thinking is deeply rooted in many cultures and is as old as written records themselves. The Book of Job, said to be the oldest in the Bible, is a drama aimed at dispelling the notion that victims are responsible for their own diseases. Job is a good man who suffers terribly. His friends plead with him to confess his wrongdoings, but he is innocent. The message is clearly that the presence of disease does not mean the sufferer is a sinful person. However, moralistic approaches that blamed victims for their diseases were prevalent until Pasteur proved the existence of germs that can strike the innocent and immoral alike.
Pasteur's discovery was made more than a century ago. But even today, many people perceive cancer as a modern-day "leprosy" and consider it "a curse by God." The notion of a cancer-prone personality -- capable of self-healing with psychological gymnastics that include visualization, laughter and excessive optimism -- is unproven and may represent nothing more than elaboration of the old folklore. Unfortunately, cancer sufferers who believe this and fail to cure themselves may wind up with the added psychological burden of thinking that for some mysterious reason, they really don't want to be cured.
The frequency of needless or premature death due to quackery is difficult to ascertain. A survey of 166 California oncologists done for the National Council Against Health Fraud in 1980 found 12 probable needless deaths and 14 other adversely affected patients. Due to a low (7%) response rate, a second survey of 65 randomly selected cancer specialists who agreed by telephone to participate was done in 1981. Thirty-three respondents reported 7 probable needless deaths, 6 premature deaths, and 14 cases of hopeless prognosis due to diversion by quackery. These numbers are conservative because several doctors who stated they had cases failed to reply, and others withheld reports because of the difficulty of knowing whether certain patients would have survived longer without quackery.
In addition to the unjustified guilt referred to above, cancer patients and their loved ones can be psychologically harmed in several other ways.
Misplaced trust. In nearly every case of harm I have examined, misplaced trust either preceded the use of a directly harmful procedure or prevented the patient from obtaining effective care. The deadly message promoted by cancer quackery is that "orthodoxy cannot be trusted." Undermining trust in the research and therapeutic establishment, the government regulators, and the American Cancer Society is crucial to the promotion of so-called "alternative" approaches to cancer management.
A case I investigated from Oregon provides insight into the thinking and actions of "true believers." A health food store owner discovered a lump in her breast. After diagnosing it as cancer, she boasted to her health food friends that she was "going to prove once and for all that diet cure works!" Unfortunately, although at least 80% of self-discovered breast lumps are benign, hers was cancerous.
Her first attempt at self-treatment was to apply the methods in the book The Grape Cure. This book claims that grapes have "powerful" and "antiseptic properties" to help "eliminate evil while building new tissues." According to the book, "cleansing" and "purification" are accomplished by eating nothing but grapes and grape juice until one stops losing weight. In the second stage, fresh fruits, tomatoes and sour milk may be added to the grape diet. The third stage introduces a wider variety of raw foods, and the fourth stage a " mixed diet." After many months, it became apparent that the grape cure had not prevented the tumor from growing.
Next, she turned to a popular herbalist in her community who treated her with herbal remedies for about six months without avail. She then went to Mexico for laetrile. Several weeks later, she asked her husband to take her home because laetrile, too, had failed. Her husband looked after her for more than a year before the lesion became so gross and her pain so unbearable that she asked to be taken to a doctor for the first time. She died five days later.
The most shocking part of the story is that she went to her grave still believing that she had done the right thing. Her husband, who provided me with the details of the tragedy, also continued to believe in the value of diet cure. He stated that he knows where she went wrong, and that if he gets cancer, will use the dietary treatment correctly. He continued to operate the health-food store, send people to the herbalist, and advocate laetrile.
Conversion to deviance. Cancer patients and/or loved ones who accompany them to the cancer treatment underworld may become converted to antisocial behavior. Often these people are encouraged to steer other cancer patients to the clinics or urged to smuggle drugs across the border that cannot be legally marketed in the United States. Even when the cancer patient dies, the loved ones may continue to believe that the treatment is effective. Failures are commonly blamed upon not getting treatment in time or to negative effects of conventional treatment. Having met others who claim they were cured may cause loved ones to determine to use it exclusively should cancer strike them. This sets the stage for a future tragedy.
Untrained people should not be expected to realize that those who claim to have been cured either may not have had cancer in the first place, may have been successfully treated by conventional methods but not converted to believe in them, or may still simply be surviving with their disease. The fact that some cancers can take a long time to run their course or produce no symptoms for a long period of time has misled many patients into believing that a quack remedy had cured them.
Stealing time. By offering false hope, quackery steals the most precious thing terminal cancer patients have -- the best use of what little time that they have left. The notion that terminal patients have nothing to lose by turning to quackery is dead wrong. Most people faced with a life-threatening disease can make a reasonable psychological adjustment. Those who face reality experience five classical stages: denial, anger, bargaining, depression and acceptance. Those who accept their fate are in the best position to use their remaining time wisely.
In the ABC-TV special "Who Will Love My Children" Ann Margret played an impoverished Iowa mother with cancer who spent her last few months finding homes for her ten children. I know of two similar cases. Quacks discourage people from making the difficult adjustment by reinforcing their denial. Such people usually die unprepared because preparation for death is an admission of failure.
Distortion of perspective. Without proper perspective, people can be made to "strain out gnats and swallow camels." Unable to tell good from bad, some people shun "toxic" chemotherapy, but swallow cyanide (laetrile). Unable to gauge how good a generally good thing is, they will overdose on vitamins, essential minerals, or dietary fiber.
Harm to Society
Quackery can also harm our democratic society when large numbers of people hold wrong beliefs about the nature of cancer and the best way to deal with it. The results can be far-reaching. Limited resources can be wasted if funds are used to follow leads based on data that are inadequate or faked. The public is giving large amounts of money in response to mass mailings by fund-raisers who extol dietary measures for preventing and treating cancer. When misinformation based upon wishful thinking becomes popular, the mass media exacerbate the problem with their power to spread ideas. These ideas can influence decision-making by patients, judges, policy-makers, and legislators. During the 1970s, the very fabric of our sound consumer protection law was seriously threatened by laetrile promoters who attempted to legalize its use. Fortunately, although about half the states passed laws permitting its sale, federal laws blocking interstate distribution were not changed. After the FDA won a protracted court battle, the use of laetrile within the United States became minimal.
Patients should be warned that when they patronize cancer quackery they face economic exploitation, risk injury or death, place themselves beyond reach of consumer protection laws, and help sustain quack operations that will exploit other cancer sufferers in the future. In addition, they expose themselves and their loved-ones to deception by some of the most persuasive con artists around -- some of whom have criminal records. People who believe they are a match for an experienced cancer quack would do well to recall P.T. Barnum's sage advice: "Never try to beat a man at his own game."
What is Needed
Quackery is a society-wide public health problem. To cope with it adequately, a more scientific approach is required. As with any other public health problem, an epidemiologic strategy is needed to develop information on causal agents (which people become quacks and why), host susceptibility and resistance factors (the characteristics of people who do and do not turn to quackery), and environmental aspects that favor or discourage the proliferation of quackery. Vital statistics are needed on the morbidity, mortality, incidence and prevalence of cancer quackery.
Presently, we have only isolated case reports. These are enough to indicate that great harm is being done, but don't tell us how many people are being harmed. I suggest that a system be developed for reporting quackery cases, patterned after the Centers for Disease Control and Prevention's system in which doctors report cases of communicable disease. This would enable us to keep track of what is being promoted, where the "hot spots" are, and what legal and educational efforts are needed for an effective response.
Health professionals have a duty to take action when the public is being abused in an area in which they have special knowledge. The failure to take concerted action against cancer quackery sends an unprofessional message. We should not condone the "victim-blaming" ideology which says that if people are too dumb to spot quackery on their own, they are probably too dumb to be worth saving. Nor should we condone the attitude of law enforcement officials who feel that quackery is "merely" a form of white collar crime" that takes money from its victims. Through our actions, we need to convey that the exploitation of cancer sufferers should not be tolerated by our society.
Dr. Jarvis is Professor of Public Health and Preventive Medicine, School of Medicine and Public Health, Loma Linda University, and President of the National Council Against Health Fraud.