Choice in Unconventional Cancer Therapies
Unconventional cancer therapies include some of the best and some of the worst treatments available. I have come to this conclusion after over 10 years of studying unconventional therapies, visiting over 50 centers throughout the world that use them, and interviewing hundreds of health care professionals and patients involved with these therapies.
The best unconventional treatments are generally those that enhance quality of life, promote general health, and engage the patient in his own treatment in psychologically and sometimes physically beneficial ways. The worst treatments are those cynically undertaken for financial gain by unscrupulous people. Between these two extremes, there are many therapies that represent puzzling admixtures of positive and negative qualities. How can patients, doctors, and policymakers evaluate unconventional therapies? How can you decide which of these therapies seems valid and which will be appropriate for you with your own particular values and preferences and your particular cancer?
In the next chapter, I discuss the acrimonious debate between proponents of mainstream and unconventional therapies in the United States. In the chapter that follows, I describe a framework within which to analyze the unconventional cancer therapies. In later chapters, I discuss some of the different approaches, as well as some of the most important unconventional cancer therapies, in detail.
To begin, it is useful to indicate how I use the many–and often confusing–terms associated with unconventional therapies: “adjunctive,” “alternative,” “complementary,” “unorthodox,” and “unconventional.” What does each mean specifically?
Proponents and opponents of unconventional cancer therapies argue frequently about these terms. In common usage, the terms used relate primarily to the degree of “acceptability” that a particular therapy enjoys within the medical establishment. “Mainstream” or “conventional” cancer therapies consist of those forms of cancer treatment widely practiced in major American cancer centers today: surgery, chemotherapy, and radiation, and, increasingly, other pharmacological and biological therapies. “Unconventional” cancer therapies, by contrast, are those approaches to the diagnosis, treatment, and care of cancer that fall outside conventional cancer treatments. I use the term “complementary” frequently to describe these therapies because I believe that, at their best, unconventional cancer therapies complement the intelligent use of conventional approaches scientifically demonstrated to be efficacious.1
Complementary cancer therapies are also called “unorthodox” and “unconventional.” The term “unconventional” is perhaps the best neutral term available, so I use it frequently. I use the term “complementary” and “unconventional” interchangeably in referring to these therapies. I use the term “alternative” when referring to unconventional therapies that are further outside the mainstream culture of cancer treatment, although this says nothing about their objective merits or deficiencies. I use the term “adjunctive” to refer to those approaches closer to mainstream respectability, mostly, and notably, psychosocial approaches, such as support groups, psychotherapy, hypnosis, and imagery.
The cultural differences among the unconventional cancer therapies are often as great as the cultural differences among the conventional cancer therapies. For example, in psychological approaches to cancer, there is a continuum from practitioners who believe only in psychological palliation to those who believe that visual imagery, psychotherapy, or affirmations regularly cause dramatic cancer recoveries. And among nutritional therapists, there is a continuum from those who offer palliative nutritional support, to scientists who are documenting the complex effects of nutrients on cancer, to alternative therapists who believe that nutritional therapies reliably reverse cancer. Similar continua could be described in other areas of unconventional cancer therapies.
Among the many subcultures of unconventional therapies that could be identified, seven stand out for most American patients as popular cultures of unconventional cancer treatments with distinctive characteristics:
1. Adjunctive psychological approaches to cancer, whose practitioners have maintained (despite some very vigorous disagreements) communication with mainstream medicine. This group generally sees itself as offering an adjunctive, as opposed to alternative, approach to cancer. They offer individual psychotherapy, imagery, group therapy, or cancer support groups.
2. Macrobiotics–a subculture unto itself–whose practitioners offer the most popular current nutritional approach to cancer, supported by a spiritual perspective on how to live.
3. A whole range of “nutritional-metabolic” programs that involve a combination of vegetarian diet and nutritional supplements. These therapies are usually offered by physicians, naturopaths, or chiropractors who specialize in such programs.
4. Traditional Chinese medicine, whose practitioners offer a combination of acupuncture and Chinese herbal remedies as an adjunctive approach to treating cancer and, significantly, alleviating side effects of chemotherapy and radiation.
5. The group of “great men and women” who offer unique and often closed or partially closed pharmacological therapies for cancer. This group includes Emanuel Revici in New York, Stanislaw Burzynski in Texas, the late Virginia Livingston in San Diego, the late Lawrence Burton in the Bahamas, and Gaston Naessens in Canada.
6. Healers–religious and spiritual–who through prayer or laying on of hands seek to assist the patient in actively recovering from cancer.
7. The cluster of clinics and practitioners in Southern California and along the Mexican-California border that offer a wide range of options, such as laetrile, Hoxsey herbs, nutritional-metabolic therapies, and immunosupportive therapies.
In the United States, most cancer patients seeking to combine conventional and unconventional cancer therapies characteristically find themselves integrating some combination of therapies from these seven subcultures with a judicious use of mainstream therapies. While there are some overlaps, many of these cultures of unconventional therapies differ greatly and are often mutually hostile.
These are the unconventional cancer therapies one hears the most about, but in reality tens of thousands of American cancer patients make use of unconventional cancer therapies that are part of folk and traditional medical systems belonging to their ethnic cultures. Latin American, Caribbean, Asian, African, and other immigrants have brought their native folk medical traditions with them to the United States. Patients with cancer from these groups often consult their traditional healers. But because these patients are for the most part people with low incomes and no health insurance, and because they consult their healers quietly and do not challenge the hegemony of the medical system, their widespread use of unconventional therapies attracts almost no attention.
1 Robert Houston, one of the most knowledgeable analysts of unconventional cancer therapies to be found in the alternative cancer therapy community, provides a different definition of “complementary”: “According to Dr. Andrew Stanway, a founder of the Institute for Complementary Medicine in London, the term originally was based on the dictionary sense of ‘complement’ as ‘something that serves to make whole’ and referred to therapies promoting wholeness of health. He notes that the common use of ‘complementary’ as supplementary to standard treatment is unrealistic, for ‘they are often at loggerheads.’ Used in the latter sense, the term would be most applicable to adjuvant chemotherapy and radiation.”
The Debate over Unconventional Cancer Therapies
It is impossible to evaluate how unconventional cancer therapies are treated legally and socially in the United States without first understanding how these therapies are treated legally and socially in other nations. Over hundreds or thousands of years, most of the world’s cultures have evolved pluralistic systems of medicine within which the allopathic, or the currently “mainstream” system, of medical treatment has come to coexist with other systems of medical care in a balance that most patients and health professionals accept as normal. Germany, England, France, and Japan, as we saw earlier, are four diverse examples of advanced technological-industrial nations that have established pluralistic systems of medicine in which conventional and unconventional systems of cancer therapy exist side by side. This is not to say that there are no controversies among proponents of the various cancer therapies in these countries. But allopathic medicine has never developed the political power in these countries to force leading unconventional cancer therapies outside the framework of legal and accessible health care.
In the United States, for historical reasons, allopathic medicine developed a degree of control over the medical marketplace that has restricted medical pluralism to a much greater extent than in Germany, England, France, or Japan. This hegemony of allopathic medicine in the United States has pushed many of what Richard Grossman has aptly called “the other medicines” to the outer boundaries of mainstream medicine or over those boundaries into illegality.1 As a result of this mainstream medical restriction–particularly in the field of cancer therapies–any U.S. medical practitioner who wishes to explore unconventional cancer therapies does so at risk to his career, his reputation, and even to his medical license.
The logical consequence of this is that health professionals who do offer these therapies in the United States often have the educational, social, and personal characteristics of people who are attracted to therapeutic, scientific, or legal frontiers. These frontiers, by their nature, are not well regulated. They offer opportunities for creative cancer therapies and also dark corners for misguided or even cynically exploitative treatments. The unregulated medical frontier therefore attracts both the most and the least ethical of practitioners.
The central question posed by the current regulatory system governing unconventional cancer therapies in the United States is whether it represents the best policy for American citizens who have a cancer that cannot be cured by a scientifically demonstrated conventional therapy. This is not an easy question, and it cries out to be addressed thoughtfully and carefully. On the one hand, it is an important function of government to protect citizens from health fraud. On the other hand, the right of patients in free societies to determine what they will do with their own bodies is one of the first and best-established principles of medical ethics.
Further tension exists between the consumer protection function of government and the important freedom of physicians to practice the medicine they believe in. The hegemony of allopathic medicine in the United States has also had a chilling effect on the development of mainstream research into the most promising unconventional cancer therapies. At present, any researcher investigating these therapies does so at high professional risk to his reputation and career. Funding is largely unavailable for such endeavors.
Is there a skillful means to reconcile these important social, medical, scientific, and legal values so as to protect the interests and personal liberties of American patients, physicians, and researchers alike? To answer this question, the United States needs to study carefully the advanced technological-industrial cultures where conventional and complementary cancer therapies are allowed greater freedom to compete in the medical marketplace.
If we overlook these working systems of pluralistic medicine in other countries, I believe we impoverish our chances to achieve a balanced view of personal, clinical, and policy options. This is not to say that, in societies that have more pluralistic medical systems, one finds that complementary cancer therapies have achieved any decisive triumphs over conventional cancer therapies–far from it. Conventional therapies are in ascendance in every country with a pluralistic medical system, in part because of their demonstrably superior efficacy in treating many forms of disease, including some cancers. I am suggesting only that legitimizing a wider range of complementary cancer therapies, and holding all medical therapies to similar legal standards, produces a higher quality of complementary cancer therapies than pushing these therapies out of the regulatory structure and beyond to the boundaries of legality. Moreover, the citizens of the advanced societies that sanction these complementary therapies seem reasonably satisfied with their pluralistic but regulated medical marketplace.
But cross-cultural comparisons do not substitute for the urgently needed studies of the costs and benefits of medically pluralistic cancer treatments in the United States. I do not agree with proponents of unconventional therapies who believe that “freedom of choice in cancer therapy” is an unmixed policy blessing. Such a position does not deal with the real problems of cancer quackery. What I am proposing is that our health policy goal as a nation should be to develop skillful regulatory policies that open the doors to the best aspects of complementary therapies in general–and cancer therapies in particular–while doing all that we can to create powerful disincentives for their exploitative use. Instead of trying to reinvent the wheel, we should look carefully at how more pluralistic medical systems work.
The United States Debate over Unconventional Cancer Therapies
I do not include in this book the details of the acrimonious political conflict over unconventional cancer therapies in the United States which has gone on for over 50 years. My goal is to raise the level of dialogue about these therapies, and an immersion in the lengthy, bitter, and contested history of this conflict does not necessarily contribute to this end. But just as I described the debate over conventional cancer therapies in chapter 4, I must also outline, at least, the debate over unconventional cancer therapies. Here I will discuss primarily the more explicitly alternative cancer therapies–those farthest out from the mainstream medical networks.
For decades, the debate over these therapies has been vituperative. Critics have characteristically dismissed the alternative therapies as quackery. Some critics, seeing themselves as the defenders of scientific medicine and the protectors of consumers against health fraud, have worked systematically and often effectively to discredit the unconventional therapies and, where possible, to disbar or “defrock” physicians and other practitioners who use alternative therapies. The “Quack Busters,” as they call themselves, include a loose national network of physicians, researchers, and attorneys. They are powerful, feared, and often despised opponents of the practitioners of alternative cancer therapies, many of whom have faced legal prosecution, lengthy trials with high legal expenses, suspension or loss of their license to practice medicine, and sometimes jail terms. To continue their practices, some have moved to other, less restrictive states, or even to Mexico or the Bahamas.
Opposing the Quack Busters is a coalition of proponents of alternative cancer therapies. The National Health Federation, the International Association of Cancer Victors and Friends, and support groups for specific alternative treatment programs are among the key participants in this coalition. The coalition consists primarily of cancer patients, relatives of patients, aficionados of alternative therapies, researchers, writers, journalists, lawyers, lobbyists, publicists, and organizers. While some members of the coalition are moderate in tone, others use harsh language and tactics. Opponents of alternative therapies have been seriously compared to Nazis. Conventional therapies such as surgery, radiotherapy, and chemotherapy are denounced as “cut, burn, and poison.” Just as a persistent belief exists in parts of the black community that the acquired immunodeficiency syndrome (AIDS) virus was engineered as part of a genocidal program aimed at blacks, a similar persistent view exists among some advocates of unconventional cancer therapies that there is a high-level conspiracy in mainstream medicine to suppress alternative cancer “cures” because they threaten to undercut the profits of the cancer industry.
While for many years the Quack Buster coalition held the advantage in this vociferous conflict, a significant shift in the balance of societal forces has occurred in the last 10 years, so that conditions are now somewhat more favorable to the proponents of alternative therapies. Several factors have been responsible for this shift:
First, the meteoric rise of interest in personal health has played a crucial role. What began as a New Age interest in organic foods, vegetarian diet, and a wide range of psychospiritual approaches to health and self-actualization gradually entered the mainstream as health promotion, behavioral medicine, mind-body medicine, and an enthusiasm for fitness and medical self-care. Since many of the alternative cancer therapies were loosely or tightly allied with these New Age endeavors, they also tended to move toward respectability.
Second, the media played a critical role in portraying alternative cancer therapies to good advantage. Since cancer is one of the most feared diseases, controversial new “cures” for cancer make excellent copy, and stories about them sell newspapers and magazines and increase ratings on radio and television shows. The rise of magazines and newspapers targeted to New Age audiences reinforced this trend, but lengthy articles favorable to alternative therapies also appeared repeatedly in magazines such as Penthouse and on major television and radio programs. The Quack Busters were often called upon to respond, but in media terms they were on the defensive.
Third, a declining faith in virtually all mainstream institutions in the United States over the past 20 years gradually fragmented the once strong consensus that had supported the War on Cancer, the American Cancer Society, and the vigilant use of legal sanctions against any approach to health not endorsed by this consensus. The investment of over $20 billion in the War on Cancer proclaimed by President Nixon failed to produce the expected “breakthrough” in cancer treatment, and even some mainstream researchers have called the War on Cancer “a qualified failure.”2 Americans became intellectually freer to explore choices in cancer therapy. Increasing numbers of U.S. citizens traveled abroad and became more sophisticated about the realities of medical pluralism.
Finally, a phenomenon closely related to the declining faith in institutions was the breakdown of mass markets throughout American society (mainstream cancer therapies had represented a mass market) and the increasing segmentation of markets to which specific products had to be targeted. Alternative cancer therapies represented, in effect, a set of health products and services that could be effectively targeted to a growing market segment of health care consumers. While this growing market was diverse, it was politically crucial to the increasing respectability of these therapies in that it included disproportionate numbers of politically, economically, and culturally advantaged individuals and groups. The fact that at least some alternative therapies appealed strongly to informed, educated, and often influential people was a powerful factor in shifting the balance of social factors in their favor.
A Boost from the AIDS Activists
The rise of the AIDS epidemic and the debate over AIDS treatment has had a profound effect on the national debate over unconventional cancer therapies. While a small minority of patients with life-threatening cancers had an interest in alternative therapies, a much larger proportion of AIDS patients were interested in alternative approaches. Unlike the vast majority of cancer patients, who had for decades quietly accepted the status quo in cancer treatment, a large proportion of gay men with AIDS were to prove militantly unwilling to accept the status quo denial of access to promising experimental or unconventional AIDS treatments.
Even more significant, many top researchers and policy officials in AIDS research tended to agree with the goals, if not the tactics, of the militants. Some of these officials stated publicly that the AIDS militants were making a fruitful contribution to science and science policy. As a result, alternative cancer therapies, which are often similar to or identical with some alternative AIDS therapies, became more broadly disseminated and more culturally acceptable while riding the slipstream of unconventional AIDS treatments.
One of most significant specific victories of the AIDS coalition was a change in Food and Drug Administration (FDA) regulations designed to allow AIDS patients to bring into the country small amounts of non-FDA approved drugs for personal use. These regulations also apply to patients bringing in similar drugs for cancer. “Buying clubs,” set up by AIDS support networks to purchase legal and illegal pharmaceuticals for people with AIDS, sometimes offer drugs that are used for alternative cancer therapies as well. Further, community-based clinical trials for new, unproven AIDS remedies were set up by AIDS physicians, researchers, and patients when they became dissatisfied with the official clinical trials. While criticized by some researchers, they have been endorsed by others. They represent a model of ethical low-cost community-based research, which advocates of unconventional cancer therapies may at some point emulate. In addition, support services for people with AIDS in gay communities–most notably San Francisco–have created extraordinary models of compassionate caring for people with life-threatening illnesses. It is a model of psychosocial, community-based support that people with cancer (and others with life-threatening illnesses) could benefit by studying.
What all this means is that people with AIDS, faced with a new disease with a lethal prognosis, rapidly created a model of multifaceted integration of conventional and unconventional treatment modalities, exceptional community-based psychosocial support, innovative research, and effective policy advocacy to change those aspects of the treatment and research systems that they found objectionable. In fact, AIDS activists essentially co-opted almost all the major elements through which a much smaller proportion of people with cancer had sought to integrate conventional and unconventional cancer therapies. In doing so, people with AIDS did a much more effective job of organizing, articulating, and meeting their needs than people with cancer–or any other disease–had ever done in modern medicine. Whatever else one may think about the AIDS epidemic, the response of the AIDS community in reshaping health care to fit its needs was unquestionably a brilliantly creative act. It expanded treatment options, accelerated research processes, built support systems, and made public health institutions more responsive to the people suffering from the disease. Because cancer patients–and those suffering from all other chronic and degenerative illnesses–could all benefit from similar changes, the initial response of people with AIDS to this global epidemic represents a milestone in public health.
Politics of Mainstream versus Alternative Therapies
Although societal forces contributed significantly to a shift in the balance of power from the Quack Busters toward the proponents of unconventional cancer therapies, the extent of the shift can be overstated. The Quack Busters still have strong institutional influence with the mainstream medical profession–particularly with oncologists, the American Medical Association, state medical societies, the National Cancer Institute, and key state and federal officials and lawmakers. Thus, despite increasing public support for unconventional cancer therapies, the Quack Busters often have the institutional advantage in the critical areas of legal and professional sanctions against practitioners of unconventional cancer therapies. With every physician whose license to practice medicine is revoked for the practice of unconventional cancer therapies, a clear message is sent to hundreds of other physicians who might have considered exploring the integration of conventional and complementary therapies. Physicians who do integrate conventional and complementary therapies, or who offer primarily unconventional cancer therapies, do so with a constant sense of anxiety that they may be the next to face legal or professional sanctions. To the Quack Busters and their supporters, this is exactly as it should be: they are upholding the standards of scientific medicine and the law, and protecting consumers against dangerous and fraudulent therapies. To the proponents of unconventional therapies, the Quack Busters are trampling on the fundamental constitutional and ethical rights of patients facing cancer and of the practitioners who serve them.
An intriguing fact about the politics of unconventional cancer therapies is that the lines of battle cut straight across the political spectrum. Proponents and practitioners of unconventional cancer therapies include numerous conservatives and considerable numbers of physicians on the far right, some actually members of the John Birch Society. They regard mainstream organized medicine as a logical extension of creeping liberal socialism, and they bitterly resent the intrusion of the state on their freedom to practice medicine as they choose. Other conservatives sympathize with their standpoint, which is essentially a free-market position. The far-right conservatives have found that some of their closest allies in the fight for “freedom of choice in cancer therapy” are New Age cultural left-wing radicals, who equally abhor the restrictive powers of organized medicine. What is fascinating is that over the years, the strength of the common cause has been so powerful that the relationship between the two groups has become much more than a temporary alliance of convenience. Similarly, on the other side of the argument, political conservatives and liberals make common cause to combat unconventional cancer therapies in the name of medical science and consumer protection.
While the bitter war between the advocates and the opponents of the more explicitly alternative cancer therapies (a relatively small proportion of all unconventional therapies) continues unabated in the courts and in the media, a growing number of health professionals and cancer patients are moving toward convergence. They are seeking to define a middle ground on which those professionals and patients sincerely committed to the objective evaluation and exploration of these therapies could convene. They envision the development of a disciplined field that would encourage rigorous scientific study of alternative therapies. They envision the crafting of state and national policy positions on unconventional therapies that would protect patients from the real threats of fraud, while providing opportunities for licensed health professionals and fully informed patients to work together in the face of life-threatening illnesses. This search for a middle ground is signaled by, but not limited to, a growing consensus that a constructive dialogue is possible about the possible benefits of psychological, nutritional, and immunosupportive approaches to cancer treatment. The Office of Alternative Medicine at the National Institutes of Health in Washington is an institutional expression of the burgeoning interest in scientific evaluation of these therapies.
1 Richard Grossman, The Other Medicines (Garden City, NY: Doubleday & Co., 1985).