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Cancer Quackery

William T. Jarvis, Ph.D.

Beginning in 1915, the American Cancer Society gathered information on quackery by what came to be called the Ad Hoc Committee on Quackery. In 1954, the name was changed to the Committee on New and Unproven Methods of Treatment. In 1970, the word "treatment" was replaced with "management" to include dubious methods of diagnosis and prevention: The Committee on Unproven Methods of Cancer Management. In 1989, the name was changed to the Committee on Questionable Methods of Cancer Management in order to differentiate between unproven methods that were not seen as promising and experimental methods that were moving through the scientific system. In 1995, the name was changed again to the Subcommittee on Alternative and Complementary Methods of Cancer Management. Through all of these name changes, the work of the committee has remained the same -- to examine unapproved, unpromising methods of cancer management and to warn patients not to use them. NCAHF believes that the term "quackery" is still accurate, and best understood by the general public in reference to that which should be avoided.

What Constitutes Quackery

Quackery is the promotion of false or unproven remedies for profit [1].This includes any method that has not met the requirements of the United States Food, Drug and Cosmetic Act (FDCA) for either experimental or clinical purposes. The FDCA is not an arbitrary set of rules. Rather, it encodes the principles of science into law. It is the cornerstone of consumer protection. Although some companies complain that its rules are too difficult, compliance over the years has enabled U.S. industry has become the world leader in the quality of its pharmaceuticals and medical devices.

To promote is "to contribute to the growth and prosperity of; to present for public acceptance through advertising and publicity." (Webster's Dictionary)) Advertising is commercial messages clearly intended to sell something. Legally, advertising represents "commercial language" and does not have full First Amendment freedom of speech protection. Publicity that is not recognizable as having commercial purposes is regarded as free speech. A great deal of the promotion of bogus cancer remedies is done as publicity. When evaluating claims, cancer patients would do well to remember that the purpose of the First Amendment is to protect writers, not readers; speakers, not listeners.

The FDCA requires full disclosure of ingredients and methods of formulation for medications, and information on how devices are designed and function. It also requires that drugs and devices used in the prevention, diagnosis and treatment of disease be proven both safe and effective before marketing. Neither safety nor effectiveness can be presumed without testing. Safety and effectiveness are rarely absolute (ie, 100% safe, always effective). They are must be evaluated on the basis of a benefit-risk ratio. Procedures must pose less risk than the untreated disease process itself, and must offer demonstrated benefits which improve survival. Methods that have shown promise in preliminary studies are classified as "experimental" and may proceed to clinical trials to test their effects upon humans. Patients who offer themselves as subjects in tests of experimental cancer treatments must be fully informed about the of potential benefits and risks.

It is important to distinguish between the promotion and the ethical use of false or unproven remedies. When false or unproven methods are promoted patients may select them instead of a type of standard care that offers them their best chance for remission or cure. The ethical use of false remedies involves using placebos which may be given to test a patient's psychological makeup. The ethical use of unproven therapies includes (a) off-label use of a therapy that has been approved by the FDA for some other disorder. When a procedure has been approved by the FDA, sufficient information exists to evaluate its risks and to estimate its potential benefits. (b) Experimental medicine involves the use of testing procedures that have been reviewed by experts and approved by human studies committees. Patients must be informed when they are being given experimental procedures and must be aware of potential risks. Providers are not permitted to profit from experimental medicine.

Emotional Vulnerability. Troubling emotions can play a powerful role during the time when the stakes are high and important decisions must be made. Cancer patients and their loved ones are wise if they recognize the vulnerability eloquently described by a expert on quackery.
In the face of the great leveler, Death, we are all like children listening fearfully for the footsteps of doom, and relieved only by the whisperings of hope. Quacks are peddlers of hope [2.

Fear. Fear of cancer is nearly universal and becomes increasingly more acute the closer one comes to the disease, either as a patient or as a member of the patient's family. Fear can immobilize a person leading to a fatal delay in proper care. Fear of the unpleasant side-effects of surgery, radiation or chemotherapy lays patients open to the appeal of questionable "alternative" treatments that claim to be "natural and non-toxic." Even the fear of the cost of high-tech cancer on the financial well-being of their families care may interfere with patients' decision-making process.

Hope. It is good for patients to be optimistic and to think and work positively with their doctors in planning and utilizing therapies. A positive mental attitude is desirable because the opposite leads to depression and despair which have their own bad effects. However, the idea that positive-thinking can affect the biology of cancer is highly speculative. Common-sense alone provides sufficient justification to encourage a positive mental attitude, but experience teaches that it is a disservice to patients to permit them to believe that mental attitude alone can significantly alter the biological courses of their diseases.

Mistrust. A national survey found that three of ten Americans believe that the government and medical profession withheld effective therapies from the public [3]. This mistrust plays an important role in the decisions of patients who choose to be treated by quacks [4]. Choosing whom they will believe is the pivotal factor in a patient's decision-making process.

The Cancer Quackery Industry

Cancer quackery has been estimated to be a $3-4 billion industry in the USA [5]. This is astounding when compared to the $1 billion National Cancer Institute research budget. Cancer quackery is highly organized. A widely available compendium lists 78 "treatment centers," 20 "educational centers," 41 "support groups," and 22 "informational services" that promote nonstandard cancer methods. Between 10% and 30% of cancer patients in the United States try quack therapies [6]. and the numbers appear to be considerably higher in other countries. Germany, Austria, and Switzerland have the highest documented prevalence ranging from 52-70%. Desperation is understandable and is exploited by quackery, however, research has found that most patients who turn to quack therapies are not terminally-ill, rather, they have been seduced by claims that the unapproved therapies are "natural" and "non-toxic." Patients who try quack therapies are more likely to be white, female, foreign born, and above average in education and income. More important are a person's attitudes. Victims are more likely to believe that their cancers could have been prevented through stress reduction, diet, and environmental factors; that disease in general is caused mainly by poor nutrition, stress and worry; that standard therapies are useless or harmful; and, that unorthodox remedies are beneficial [7.

Kinds of Quacks

Cancer quacks promote lifestyle practices, clinical tests or therapeutic procedures for the prevention, diagnosis, or treatment of cancer which have not been proved safe and effective. There are at least three basic types of quacks, charlatans, huckster, and cranks. Charlatans are fakers who operate without conscience. They are psychopaths who are "social predators who charm, manipulate, and ruthlessly plow their way through life, leaving a broad trail of broken hearts, shattered expectations, and empty wallets. Completely lacking in conscience and in feelings for others, they selfishly take what they want and do as they please." [8] If you think that these quacks are easy to spot, think again. Their ability to instill confidence in their victims is their hallmark. It was this kind of con artist P.T. Barnum had in mind when he warned, "never try to beat a man at his own game." Hucksters are buccaneer entrepreneurs who operate on the basis of the supply and demand principles of the marketplace, with no concern about the scientific value of their wares. Cranks are sincere people who truly believe in their theories. They may be eccentrics, psychiatric cases who suffer from the Messiah complex, or ideologists whose strong beliefs make it impossible for them to be objective. A trait all types of quacks share is that they exude self-confidence. This plays well to the wishful thinking of their victims.

The Language of Quackery

Popular terms used to sanitize cancer quackery today are "alternative," "complementary," or "innovative" medicine. Such terms are doublespeak: "language that makes the bad seem good." [9] A government investigation stated that unconventional cancer methods are defined by what they are not, they are not part of mainstream medicine that adheres to the standards of science that are written into consumer protection law in the United States [10]. The cornerstone of such law is the Food, Drug and Cosmetic Act which requires medications and medical devices to be properly labeled, and to be proved safe and effective for their intended purposes. The American Cancer Society uses questionable in reference to unapproved methods because such methods have failed to answer one or more of the basic questions that must be asked of any method that claims to prevent, diagnose, alleviate, or cure cancer.

Excuses Used by Quacks

The establishment won't test their remedy. Cancer quacks often complain that their lack of acceptance is due to a refusal by the "establishment" to test their procedures. People making such charges are attempting to sidestep the fact that proponents bear the burden of proof for the value of their procedures. This is for very good reason. It is they who can be presumed to understand how the new procedure is to be best applied. Others may not use the right substances, dosages, or timing; they may not apply them to the right subjects, treat for a sufficient period of time, or use a myriad of other applications in a proper manner. Not only is it the responsibility of proponents to conduct suitable studies, but they must report their testing methods with sufficient detail to permit replication by others.

It costs too much to prove a procedure. Sometimes quacks complain of the high cost of moving a new treatment through the FDA approval process. In reality, the early studies proponents are expected to perform do not have to be as extensive as what is required for final FDA approval. They only have to yield some useful result that indicates that the method is worthy of further study. Funds can easily be found for studying procedures that truly have promise. The National Cancer Institute has provisions for testing promising new therapies that arise unexpectedly in its Natural Products Screening or Developmental Therapeutics programs. Well-meaning proponents can expect a fair hearing and a preliminary test of their theories if they act in good faith. Quacks are uncooperative even though publicly they may clamor for a review.

I was given only a short time to live. Physician forecasts of survival time are based upon group averages. The midpoint of patient survival statistics (ie, half are deceased, half are alive) is called the median. By definition then, half of all patients will survive longer than predicted by statistics. The first half will die within a relatively short time period compared to the group's overall length of survival. The second half will not only survive longer than predicted, but some of these patients will survive for an extraordinary length of time. In the case of breast cancer, for instance, a professor of surgery states:

We are uncertain about the natural history of untreated breast cancer. I have studied and written about this subject for nearly 25 years. Anecdotally, I have about a dozen patients with well-documented case histories who have refused all active therapy and have lived in symbiosis with their tumors for up to 35 years. (Baum, 1991*)

One gauge of doctor's inability to predict survival is a report that 84% of survival predictions given hospice patients are wrong, and the tendency in predictions involving more than 3-4 months is to under estimate survival time [11]. There is no way to know which individuals will be exceptional survivors. It has been suggested that mental attitude makes the difference, but scientific studies have not shown that this is the case. Nevertheless, patients and providers should be as optimistic as reality will permit.

Science doesn't have all of the answers. Some quacks claim that their methods are "holistic" and cannot be tested by scientific means. They ask for their methods to be accepted on the basis of their stated good intentions, unsubstantiated claims of success, patient testimonials, and on marketplace demand for their services. NCRHI does not doubt people's good intentions, but notes that many atrocities have been perpetrated with good intentions. Claims of success and testimonials are usually based on cases in which cancer patients appear to be doing well, especially in the face of having exceeded some prediction about how much time the patient had left to live. Such cases must be judged by the realities of what is known about cancer patient survival. The Office of Technology Assessment of the United States Congress summed up the matter of what it takes to prove the value of a cancer treatment method when it stated:

The same principles of evidence apply to unconventional as to conventional treatments. The need for unbiased randomized clinical trials is not obviated by any factor specific to unconventional treatments." [10]

The OTA report went on to discuss some differences in emphasis between conventional and unconventional treatments (e.g., emphasis upon quality of life versus survival time), but in no case is there a short cut to establishing true safety and effectiveness.

How Cancer Quackery Harms People

The great tragedy of cancer quackery is that patients needlessly die as a result of being diverted from effective standard treatment. There is no way at present to know how many victims there are, but in a country that places a high value on the lives individuals, case reports are sufficient to create a sense of outrage in socially-conscious people when these tragedies occur (see Appendix: Reports of Harm). Early diagnosis and prompt treatment are the cancer patient's greatest ally. Delaying or diverting from proper care can turn a curable patient's cancer into a fatal disease. Quacks are fond of citing questions which have been raised in the scientific literature about the amount of true progress that has been achieved in cancer treatment. In 1987, the U.S. General Accounting Office (GAO) analyzed the progress which has been made in cancer patient survival and concluded that "advances in the detection and treatment of cancer from 1950 to 1982 have extended survival in all but one of 12 cancers GAO examined." The report noted that biases sometimes artificially inflate the amount of true progress in some cancers. The GAO mainly criticized biases in the calculation of five-year survival figures. These can be distorted by improved cancer detection procedures. Earlier diagnoses move backward the time-point at which counting the five-year survival period begins. Age-specific and overall death rates are less affected by problems cited by the GAO, and these support the view that progress has been made. Particularly impressive has been the progress in treating cancers which strike children and young adults. Questionable methods are often aggressively promoted as "alternatives" to scientific treatment for children. It is a terrible waste to divert patients, particularly children and youth, from lifesaving care.

Cancer quacks exploit the gambler's fallacy, the erroneous notion that there is "nothing to lose" by trying dubious remedies. In fact, the threats of questionable therapies include:

Psychosocial Harm. Quacks may lay burdens of guilt upon cancer patients or their loved ones by chiding them for not having used their wonder cures sooner. They may say that standard therapy destroyed the patient's chances for cure by having had conventional therapies; or, failing to have healed the patient by the "right" mental attitude. In some patients, cancer is terminal. It is best to face this harsh reality. The psychological adjustments terminal patients are known to experience include stages of denial, anger, bargaining, depression and acceptance. Achieving acceptance doesn't mean giving up on fighting the disease, but accepting the immediacy of the eventual fate of all living creatures. Well-adjusted patients will put their personal affairs in order. They may use remaining time to fulfill lifetime goals. In several instances, mothers facing terminal cancer have used the time to find suitable homes for the children they will leave behind. One such case was dramatized by ABC television in Who Will Love My Children in which Ann-Margaret played an impoverished Iowa woman who found homes for her ten children before she died. False hope that interferes with patients' psychological adjustment may steal the best use of their remaining time. In additional psychological damage, some families have been impoverished by heroic efforts to "leave no stone unturned" in their desperate search for a cancer cure. Homes have been mortgaged, and/or money borrowed from a family's life savings, to pay for gambles on questionable remedies leaving families with depleted financial resources at a time when they are badly needed.

References

APPENDIX: REPORTS OF HARM

Case Reports, Direct Harm

Nonpermanent Injury:

Permanent Injury:

Death:

Harm to others:

Quality of Life:

Case Reports, Indirect Harm

Note: 40% of patients who used both unorthodox and conventional therapies discontinued conventional care after an average of 8 mos; the remaining 60% continued to use both types of therapy. (Cassileth, 1984)

Permanent Injury (Including Excessive Surgery) Due to Delay of or Interference with Proper Care:

Death (Probable) Due to Delay of or Interference With Proper Care:

Death (Probable) Due to Diversion from Proper Care:

Psychological Harm

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© 2000 National Council Against Health Fraud. With proper citation, this article may be reproduced for noncommercial purposes

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This article was posted on December 17, 2000.