Published in the Bulletin of Experimental Treatments for AIDS January 1998 issue, by the San Francisco AIDS Foundation.

January 1998 Table of Contents

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Complementary and Alternative Medicine: Exploring Options and Making Decisions

By Leslie Hanna

Introduction

The use of complementary and alternative medicine (CAM), by persons of any HIV serostatus, is controversial in the U.S. Traditionally, people are either staunch proponents or opponents of CAM. While those in the supporters' camp have tended to be critical or even disdainful of the medical "establishment," those in the skeptics' camp have pointed to the lack of controlled studies and scientific data which they felt justified their view of support for CAM as akin to religious fanaticism.

Times have changed. According to recent articles in both the lay and medical literature, nearly half of U.S. adults use some form of CAM -- a larger number than ever previously reported. While standard Western medical studies of specific CAM treatments, particularly in people with HIV/AIDS, are still lacking, a few studies to date have gathered data and produced results. Many more are currently underway or in development.

This article will present an overview of CAM from a Western perspective. After the overview, the article will provide people with HIV and their primary healthcare providers tools to create a framework for making CAM treatment decisions. Since data on any given type of CAM range from scarce to nonexistent, one of the most important things people with HIV and their primary care providers can do is to devise optimal methods for evaluating and making treatment decisions about CAM therapies. Ultimately, persons with HIV will opt for the treatment regimens that are most appropriate for them as individuals. Persons making decisions about treatment may be served best by regarding themselves as healthcare consumers: comparing, asking questions and buying only after careful deliberation.

What is CAM?

In the U.S., most alternatives to Western medicine are collectively referred to as complementary and alternative medicine. Thus, CAM refers to a broad range of treatments, approaches and philosophies. CAM encompasses alternative systems of medical practice (e.g., Tibetan medicine), dietary systems (e.g., macrobiotics), "manual healing" techniques (e.g., massage therapy) and integrative mind/body approaches (e.g., biofeedback). In general, alternative tends to signify the preferential and sole use of some type(s) of CAM, for example Chinese medicine instead of Western medicine. Complementary signifies the supplemental use of CAM in addition to conventional Western medicine, such as when an HIV positive person uses an herbal formula in addition to antiretroviral drugs for HIV infection.

With regard to HIV/AIDS, CAM may be defined as any treatment that is used by HIV positive persons that is not approved by the U.S. Food and Drug Administration (FDA), or any FDA-approved substance or device that is used for indications and/or in doses not approved by the FDA.

The use of CAM is controversial in the U.S. CAM treatments are not emphasized in most U.S. medical schools and are not generally offered in doctors' offices or in hospitals. Furthermore, although acupuncture and chiropractic fees are sometimes covered, CAM treatments usually are not reimbursed by third-party payers like insurance companies. The safety and efficacy of many CAM treatments have not been rigorously tested according to Western medical and scientific standards; thus, many Western healthcare practitioners such as medical doctors and registered nurses, as well as the general public in the U.S., remain skeptical about CAM.

However, the popularity of CAM continues to rise in the U.S. According to recent articles in the medical literature (Archives of Family Medicine, Annals of Internal Medicine), approximately half of the adults in the U.S. use some type of CAM. (Worldwide, the World Health Organization reports that 80% of people use some type of treatment or modality that is popularly considered CAM in the U.S.) The article in the Archives of Family Medicine states that 53% of CAM users report such use to their primary physicians, and the Annals of Internal Medicine article stresses the necessity for discussion of CAM between patients and their primary physicians. At the same time, practitioners of conventional medicine are becoming more familiar with CAM. In fact, the August 1997 issue of Nature Medicine reports that 80% of contemporary U.S. medical students are requesting more training in CAM.

The mainstream arrival of CAM is affecting both the practice of clinical medicine and the biomedical research establishment. In 1992, the National Institutes of Health (NIH) created an official body within the overall institutes that is charged with the investigation of alternative medicine. The Office of Alternative Medicine (OAM) has been challenged ever since its creation to fulfill its mandate and to simply survive. Despite a mission of great importance, the OAM has received negligible power in terms of funding. In September 1994 the OAM made 2 large awards, one of which directly affects people with HIV/AIDS. Bastyr University in Seattle received $840,000 to study alternative treatments for HIV/AIDS. Also, the Minneapolis Medical Research Foundation received the same amount to study CAM and substance abuse. Earlier this year, Bastyr closed enrollment in its monumental nationwide survey of over 170 CAM therapies in the context of HIV/AIDS; preliminary results should be forthcoming soon.

The Spectrum of CAM

An NIH report called Alternative Medicine: Expanding Medical Horizons contains a thorough summary of fields of CAM practice as well as some operational definitions. The report was based on a meeting, the Workshop on Alternative Medicine, held in 1992. The workshop was intended to facilitate discussion between members of the CAM community and the biomedical research community. According to the OAM, the report represents "a series of opinions expressed by nongovernmental participants in the workshop" rather than a set of endorsements or recommendations for research. The OAM and the NIH urge readers of the report and people interested in CAM "not to seek the therapies described herein without the consultation of a licensed healthcare provider."

Alternative systems of medical practice refers to types of health care ranging from self-care according to folk principles, to care rendered in an organized health care setting based on alternative traditions or practices. Examples include acupuncture, ayurveda, environmental medicine, homeopathy, naturopathy, Latin American rural practices, Native American practices, shamanism, Tibetan medicine and Traditional Chinese Medicine.

Bioelectromagnetic applications refers to the study of how living organisms interact with electromagnetic fields. Examples include electroacupuncture, electrostimulation and neuromagnetic stimulation devices, and blue light treatment and artificial lighting.

Diet, nutrition and lifestyle changes relate to the knowledge of how to prevent illness, maintain health, and reverse the effects of chronic disease through dietary or nutritional intervention. Examples include a macrobiotic diet, nutritional supplements, and megadosing with vitamins and minerals.

Herbal medicine or herbalism refers to practices that employ plants and plant products for pharmacological use, and generally derive from folk medicine traditions. Substances commonly used include echinacea (purple coneflower), ginkgo biloba extract, ginseng root and witch hazel.

Manual healing refers to the use of touch and manipulation with the hands as a diagnostic and therapeutic tool. Techniques include massage therapy, acupressure, chiropractic medicine, the Alexander Technique, osteopathy, reflexology, zone therapy and the Trager Method.

Mind/body control is the exploration of the mind's capacity to affect the body, based on traditional medical systems that emphasize the interconnectedness of mind and body.

Pharmacological and biological treatments include drugs and vaccines not yet accepted by mainstream medicine, such as cell treatment and oxidizing agents like hydrogen peroxide and ozone therapy.

Reports, mostly anecdotal, indicate that some, if not many, of these approaches have been tried by people with HIV/AIDS. Still, there are few data to define clearly which types of CAM have been used most often by people with HIV, let alone whether beneficially or harmfully. Many of these therapies have not been subjected to rigorous scientific study to evaluate safety or efficacy in any context, and many are not FDA-approved for anything.

A Brief History of CAM in the AIDS Epidemic

Since the beginning of the AIDS epidemic, people with HIV/AIDS have used different forms of CAM. Initially, the lack of understanding of HIV disease motivated use of CAM. Since no one yet knew what HIV infection really was, there were, of course, no specific treatments. Essentially, nearly anything a person with HIV/AIDS might try to improve his or her health was an alternative therapy. For example, taking very large doses of vitamin C was one of the first types of CAM used by people with HIV/AIDS. Since anecdotal reports indicated that vitamin C had broad antiviral activity, people began taking high doses orally or intravenously; ultimately, little real antiviral benefit was noted. Dinitrochlorobenzene (DNCB), a photochemical that some people applied to patches of skin, usually on the arms, in the belief that doing so would stimulate cellular immunity, was another early alternative treatment. Other early alternative treatments included ribavirin, dextran sulfate, hypericin (also called St. Johns Wort) hyperthermia and Compound Q (still in use today). Some of these CAM treatments rather quickly fell from favor or were dismissed as ineffective, while others persist. Many were studied in controlled trials and found ineffective. Even now there are supporters of vitamin C megadoses, Compound Q and even DNCB.

Today, with 11 FDA-approved anti-HIV medications for adults and 5 for children marketed and widely available, the picture has obviously changed, and so has the role of CAM. Over the past 15 years, interest in CAM has often fluctuated in response to FDA approval or rejection of new HIV drugs, as well as to disappointments or promising breakthroughs in the biomedical research arena. These trends have been reported by CAM community members such as buyers' club staff, by AIDS historians and by AIDS researchers such as Donald Abrams, MD. For example, in 1986, with the approval of AZT, the first agent approved for the treatment of HIV, interest temporarily shifted away from alternative therapies. As the limits of AZT began to emerge, interest in alternative therapies began to rebound, until the 1989 approval of ddI. Then, interest shifted again to FDA-approved treatments available by prescription. In 1993, when preliminary and disappointing results were released from the Concorde trial that suggested limited usefulness of AZT in terms of disease progression and survival, interest in CAM resurged.

From the beginning of the AIDS epidemic, people with HIV and their advocates have demanded both research into HIV disease and access to experimental treatments. The unrelenting nature of the disease and the demands of the epidemic, as well as those affected by it, have influenced the biomedical research and governmental establishments. For instance, FDA changed long-standing regulations to permit individuals to import a supply of drugs for personal use from another country. Also, FDA began to "fast track" experimental drugs and grant wider early access by people with HIV/AIDS and other life-threatening diseases.

While the general popularity of CAM in the U.S. continues to increase, its role in HIV/AIDS also may be shifting. Today, with the current widespread popularity of antiretroviral therapy, CAM is likely to be used in a more complementary rather than alternative fashion. Also, since effective antiviral drugs are available, people may be more interested in using CAM for HIV-related conditions that do not respond to highly active antiretroviral therapy (HAART), e.g., wasting syndrome.

These trends began in July 1996 when, at the XI International Conference on AIDS in Vancouver, the first widespread reports of the efficacy of HAART were presented, inaugurating a new era of optimism. For the first time, people began to consider that HIV disease might actually become a chronic manageable condition. Since then, troublesome reports have emerged that suggest that HAART may not succeed for everyone. Yet, generally speaking, antiretroviral therapy has never before appeared more promising to researchers, providers and people with HIV.

Misha Cohen, OMD, LAc, a San Francisco-based practitioner of Chinese medicine, shared her perspective on the complementary role of CAM that seems relevant in the era of HAART: "In this era of protease inhibitors, undetectable viral loads and increasing T-cells -- for some people -- questions have been raised as to the continuing need for CAM....CAM, especially Chinese medicine, is very important now to provide the immune support the body will need for extended years of drug treatments and to battle the onslaught of drug side effects brought on by powerful new drugs. Chinese medicine has been especially effective for people with HIV."

CAM, HIV and Individualized Treatment

More so than in Western medicine, most forms of CAM accord great importance to the whole individual. Optimal HIV disease management requires individualization; this principle is one that most people in the HIV community agree upon. For example, early use of protease inhibitors may not be effective for everyone. One reason for the continuing popularity of CAM among people with HIV is the individualization that CAM affords, if not demands. CAM is simply not to everyone's liking; CAM must be discussed between individual patients and providers; and optimal CAM use generally entails personalization. Individualization is a hallmark, for example, of Traditional Chinese Medicine. During the diagnostic process, the practitioner not infrequently will spend hours speaking with, examining and listening to a patient, taking the time to ask her or him about such personal matters as sleep patterns, dreams, moods and feelings. Compare this to the minutes usually allotted for the meeting between doctor and patient in the traditional Western model, which pressures both doctor and patient to be as succinct as possible.

Today, the goal regarding CAM and HIV is to design the best combination treatment regimen for an individual with HIV. This likely means combining standard Western antiretroviral drugs (and possibly other approved pharmaceuticals) with the appropriate type of CAM. Thus, CAM plays a supportive, useful role in an individualized health care regimen.

Who is Using CAM Today?

Over the course of the AIDS epidemic, a few studies have attempted to define who uses CAM. As noted above, use fluctuates with the approval of promising drugs, etc. Studies suggest that significant numbers of people with HIV/AIDS use or have used some form of CAM (e.g., 42% of women attending an outpatient HIV clinic in Vancouver in 1996; 30% of UCSF AIDS Clinic patients in 1989). At the XI International Conference on AIDS, Judith Berrier and colleagues from Mt. Sinai Medical Center in New York City presented an analysis of data drawn from nearly 1,300 participants in the Women's Interagency HIV Study (WIHS), a multicenter longitudinal study of the natural history of HIV infection in women. Over half of these women reported some use of CAM, but far less than half (30%) discussed CAM use with their primary healthcare provider. The investigators tentatively concluded that women with HIV may be more likely than men with HIV to try or to use CAM regularly, and may be more reluctant to discuss CAM use with healthcare providers. Indeed, a significant and recurrent finding is that people who use CAM often do not disclose or discuss such use with their primary healthcare providers. Forthcoming results of the comprehensive Bastyr University survey previously mentioned should help clarify what is being used, by whom, and how.

Chinese medicine has consistently been one of the most popular alternative modalities used by people with HIV/AIDS. (See the September 1997 BETA for an article that focuses on Chinese medicine and women with HIV. That article provides an introduction to the Chinese medical system, its terminology and concepts, and information about how to access care that is targeted to women with HIV, as well as useful gender-neutral information.)

CAM substances in use today by people with HIV/AIDS include high-dose vitamin/mineral/antioxidant supplementation (e.g., vitamins C, E, or B complex, niacin, zinc, selenium, beta carotene and n-acetyl cysteine or NAC). One drawback to high-dose micronutrient supplementation is possible gastrointestinal distress, along with other, nutrient-specific side effects. When it comes to megadosing, or taking vitamin and mineral supplements in extremely high doses (many times the daily recommended levels), there is little conclusive scientific evidence of benefit and quite a bit of contradictory evidence, since some detriments also appear possible. For example, megadoses of zinc can lead to impaired immune function, along with gastrointestinal distress. Megadoses of calcium involve the risks of constipation and impaired kidney function. There are several texts about nutrition specifically written for people with HIV.

Also popular are herbal or botanical medicines (e.g., SVP-30, bitter melon, aloe vera, mistletoe, garlic, grapefruit seed extract, hypericin and Glycyrrhiza glabra). Chinese herbs in traditional mixtures are believed by some to relieve symptoms and to bolster the immune system; side effects are possible, but not often seen. Currently, a few trials are underway to evaluate the anti-HIV effects of selected Chinese herbal formulas. Another plant derivative, tea tree oil (extracted from an Australian shrub called melaleuca) appeared in a small trial to successfully treat refractory oral candidiasis. Other categories of CAM in use today are biologics (e.g., DHEA, a precursor to testosterone available in health food stores and from buyers clubs; thymus gland fractions; shark cartilage; and Peptide T), pharmacologics (e.g., DNCB, hydrogen peroxide and naltrexone) and homeopathics (agents listed in the Materia Medica).

Wasting syndrome and immunotherapy are 2 areas of HIV care in which interest in CAM is high. People continue to use hormones such as anabolic steroids and testosterone preparations, as well as oral DHEA, along with weight-bearing exercise, in order to maintain or regain muscle mass. Currently, there is interest in agents such as thalidomide, which reportedly inhibits cytokines that have been implicated in wasting syndrome. Smoked marijuana is a popular (and highly politicized) type of CAM for wasting; the first approved clinical trial of smoked marijuana in people with HIV/AIDS will soon begin at San Francisco General Hospital.

For immunotherapy, some people recently have tried injections of a mouse monoclonal antibody, Cytolin, to try to improve the activity of certain immune system blood cells. However, Cytolin is expensive, involves the risk of anaphylaxis and has not shown great benefit.

The popularity of different types of CAM has changed over the years. Some have been dismissed for lack of efficacy and forgotten, or rejected as dangerous (e.g., Kombucha "mushroom" tea) and abandoned. Some types continue to be used as alternatives or as complements to an individualized regimen of Western antiretroviral agents (e.g., acupuncture and Chinese medicine). Some agents available initially only through the underground have gone on to be studied in standard clinical trials through university centers (such as NAC, studied at Stanford University) or government networks such as the AIDS Clinical Trials Group, or ACTG (for example, thalidomide for aphthous ulcers and for wasting).

The list of CAM therapies used by people with HIV is continually changing and growing. Still, the overwhelming majority have not been studied for safety or efficacy.

The Search for Intelligent Data: CAM Research

Although scientific studies of CAM are few, it is worth searching for information on treatments of potential interest. More data exist for some types of CAM than many people, including medical doctors, may realize. There are in vitro studies of agents or therapies, such as NAC, which can be reviewed with the caveat that data gathered in laboratory studies cannot be extrapolated to predict exactly what will happen in the human body.

There are also anecdotal data. Proponents of herbalism, for example, point out that, despite a lack of modern controlled clinical trials, the possible efficacies and toxicities of many herbal remedies have been well studied over the course of hundreds or thousands of years.

Finally, even the most conservative, double-blind, placebo-controlled Western study may have damaging or fatal flaws. Therefore, all studies and study results -- Western, traditional, placebo-controlled, large, small, observational, retrospective, prospective -- should be interpreted with a critical mind. (See the sidebar on resources.)

In general, the medical literature on CAM and HIV indicates that some of the antioxidants and nutritional therapies that have been studied as complementary aspects of anti-HIV regimens appear beneficial. For example, HIV positive men who used a daily multivitamin had a lesser risk of AIDS and low CD4 count. However, in the Multicenter AIDS Cohort Study (MACS), use of high doses of supplemental zinc appeared immunosuppressive, and were linked to faster progression to AIDS. In Malawi, the use of supplemental vitamin A by pregnant HIV positive women who had vitamin A deficiencies appeared to reduce the risk of perinatal HIV transmission. In another study, HIV positive injection drug users with vitamin A deficiency had an increased mortality rate, compared to those without the deficiency. Although vitamin C is taken in large doses by many HIV positive people, and although in vitro studies suggest that vitamin C (ascorbate) can suppress HIV replication in CD4 cells, no controlled studies have been conducted in humans to test its real utility.

Other modalities have been evaluated at least preliminarily. Overall, some herbs apparently may be helpful and others may be dangerous. Acupuncture may be useful for some conditions (e.g., nausea) but not all (e.g., peripheral neuropathy). Yoga and other forms of movement therapy appear to reduce stress, alleviate depression and enhance quality of life, as well as decrease unnecessary inflammatory responses by the immune system. Weight training appears to be an important aspect of combating wasting syndrome and general body depletion by building up muscle mass. Other CAM modalities -- e.g., DNCB -- after some study have shown little benefit.

Data also may be available from other countries. Data from China and Germany indicate that some forms of CAM are effective for treating some medical conditions. For example, an herbal treatment called St. Johns Wort (Hypericum perforatus) was clinically tested and approved in Germany for the treatment of mild-to-moderate depression. When evaluating results from studies from other countries, it is important to scrutinize the study design and precepts, which may differ appreciably from procedures in the U.S.

Over the past few years, the NIH has funded over 40 research projects on alternative treatments; data should be forthcoming in the near future. As previously mentioned, Bastyr University has completed their nationwide trial of CAM in HIV disease; results should be highly informative and are anticipated soon. Finally, many trials of CAM are or will soon be underway in various settings (government networks, universities, local clinics). For information about enrolling or ongoing clinical trials, call the AIDS Clinical Trials Information Service (ACTIS) at 1-800-TRIALS-A, and see the section in BETA called "Open Clinical Trials" for HIV/AIDS Treatments.

An in-depth analysis of all studies lies outside the scope of this article, which intends to equip people with HIV and their primary care providers with a way to evaluate, discuss and make treatment decisions about CAM.

See the sidebar called "Resources for Researching CAM." Ultimately, the research process is likely to fall in large part on the individual who is interested in a particular CAM therapy.

Potential Risks and Benefits of CAM: Do No Harm

The basic concepts of safety and efficacy are critical to evaluating potential CAM therapies. Safety essentially means that the benefits are greater than the risks and that no harm will be done when properly used. Efficacy refers to the likelihood of benefit when properly used.

Some types of CAM, like massage or meditation, involve little or no risk to a user. Benefits, which include a powerful placebo effect, may be actual. Both patient and provider may feel reasonably assured that the treatment will "do no harm."

However, other types of CAM, such as herbal medicine, have the potential to cause harm and thus must be regarded and approached differently. For example, the U.S. Centers for Disease Control and Prevention (CDC) has reported deaths associated with use of ephedrine or ma huang, an herb found in various teas and herbal formulations. Herbs including chaparral, germander, comfrey, mistletoe, skullcap, margosa oil, Gordolobo yerba tea, Kombucha tea, pennyroyal (squawmint oil) and some types of Mate teas have been associated with toxicity and even death. In addition, especially for people with HIV who are taking powerful antiretroviral drug combinations, it is important to know that many herbs and vitamins, like many anti-HIV drugs, are metabolized by the liver and excreted by the kidneys. There may be powerful drug/herb interactions and possible toxic or even life-threatening reactions involving the body's metabolic and excretory systems. Pregnant women with HIV have additional concerns that should be addressed and followed in close and regular consultation with their primary care providers.

There is little conclusive evidence about the efficacy of many types of CAM, especially in the context of HIV/AIDS. One of the most important things a person considering a CAM treatment can do is to try to minimize the potential risks. To assess the safety and efficacy, patients can ask a healthcare provider -- Western physician or CAM provider -- about their knowledge of the treatment's safety and efficacy.

Other CAM Considerations: Credentials and Cost

People with HIV who are interested in CAM do not have to throw all caution to the wind in terms of CAM expertise. Beyond independent research into what data are available, there are also licensed, legitimate alternative medicine practitioners who may be consulted. Licensed alternative providers include naturopathic physicians, acupuncturists and practitioners of Chinese medicine, massage therapists and hypnotherapists.

Since the CAM practitioner may play a large role (or, in the case of massage therapy, the primary role) in ensuring safety and efficacy, evaluating the practitioner's credentials may be helpful. State or local regulatory agencies that have authority over the CAM therapy or practitioner may be consulted. Local and state medical boards, other health regulatory boards or agencies, and consumer affairs departments may be sources of information about a specific practitioner's education, license, and whether any complaints against that person are on file. Many types of CAM have professional and national organizations that can give information about state licensing, certification requirements and legislation.

Other health care practitioners as well as patients of the CAM practitioner in question may provide references. Finally, ask the practitioner directly about his/her training, education, licenses, etc. Ask about his/her approach and evaluate how willing he/she is to communicate about technical aspects and potential benefits and risks. Visit the provider's offices or clinic to try to gauge the quality of service delivery. It is important to feel that any CAM practitioner is open and communicative; questions should be welcomed and answered. Communication between provider and patient is an important and ongoing aspect of CAM.

Since many forms of CAM are not reimbursable by health insurance, consider the risks/benefits with an eye toward cost as well. Patients often must pay directly. Inquire beforehand about the possibility of insurance reimbursement or low cost or free care for people with HIV.

Working Together: Partnerships between Primary Care Providers and Patients

Even today in the U.S. and much of the Western world, CAM still bears some stigma, yet evidence indicates that doctors as well as patients are more open to CAM. Since interest in CAM is particularly salient and potentially very beneficial, especially in the context of HIV, it is incumbent upon both patients and providers to develop a way to acknowledge and potentially incorporate CAM into HIV disease management.

For their part, primary healthcare providers should be aware that studies indicate that a significant proportion of people with HIV/AIDS use CAM and that many do not talk with their primary providers about CAM. Therefore, providers should recognize that their patients may be using CAM and should become acquainted with and conversant about CAM options. In addition, improved communication with the patient about all agents they take to treat HIV disease will enable better care, fostering a better understanding of patients' symptoms as they relate to side effects of agents, as well as forewarning of potential interactions with prescription medicines. Close monitoring of the patient and use of a patient-kept symptom diary (see sidebar) are helpful tools. The goal for providers is the provision of safe, optimal, individualized health care.

CAM in particular presents a set of challenges for medical doctors and their patients with HIV. Persons with HIV may independently research and form opinions about a potential treatment, considering it essential to their survival. Physicians who wish to practice medicine diligently may have reservations about unapproved or unstudied agents, which run the gamut from legal concerns to discomfort with unstudied medications to simply not wishing to recommend any unapproved treatment.

Patients and providers are best served by developing a cooperative relationship. Today, more and more people with HIV insist on being proactive about their medical treatment, in spite of uncertainties about pathogenesis and treatment. As Project Inform states in a discussion paper Doctor, Patient and HIV, "many people with HIV find taking a more active role in their medical strategies a fundamental part of their personal empowerment. This might come, however, at the expense of a change in the traditional power dynamics of the doctor-patient relationship."

For their part, persons with HIV/AIDS should learn as much on their own as possible and find a doctor whose general style they like (i.e., a doctor who sees himself or herself as a collaborator, or as an authority, etc). Patients can write down key questions and points for discussion before going to medical appointments, and should communicate treatment requests in a spirit of mutual respect. Especially when it comes to unapproved treatments, doctors and patients may initially disagree. Ideally, through discussion, greater understanding on the parts of both parties should arise. Sometimes, such discussion may even lead to uncovering alternatives not anticipated.

Project Inform reminds doctors that the uncertainties of HIV/AIDS require flexibility from doctors and people with HIV and that more thorough discussion may be required when devising treatment plans.

Conclusion: What Next?

Broadly speaking, CAM offers many options to individuals, which is one of the reasons for its continuing popularity among people with HIV/AIDS. Currently, in the era of enthusiasm over HAART, the role of CAM appears to be more complementary or supplementary.

On an individual level, a person who begins to experience increasing viral load, especially someone who has exhausted available, approved treatment options, is likely to begin to look for alternatives, including CAM. In the eventuality of wider HAART failure, the popularity of CAM may rebound among people with HIV. In addition, as more powerful antiretroviral treatment options become available, interest in CAM may subside.

As CAM itself continues to become more acceptable to the general public and as widespread interest grows, fortifying the political will to conduct well-designed research, more studies are likely to be conducted and welcomed.

Leslie Hanna is the Associate Editor of BETA.

Talking with Your Primary Care Provider about CAM

Discussing CAM use with your doctor increases your treatment options as well as your chances for receiving the best healthcare possible. Since your doctor may not mention CAM, you can initiate the conversation. David Eisenberg, MD, in an article in the Annals of Internal Medicine, suggests some helpful steps:

• Describe your symptoms to your doctor as well as possible.
  
  
• Keep a daily symptoms diary in which you record what your symptoms are, how often they occur and how severe they are, and any related information such as what medications you take and when. Over time, a symptoms diary can provide invaluable information about your general health as well as the efficacy of treatments.
  
  
• If you are interested in a form of CAM, ask your doctor what he or she knows about it (i.e., its safety and efficacy). Ask your doctor for assistance in finding a qualified CAM practitioner -- how to find a licensed acupuncturist, for example. (Licensing requirements vary among states.)
  
  
• Once you identify a potential CAM healthcare provider, interview him or her. Ask what the treatment will consist of and what it will cost. Ask when results should appear and if side effects are likely. Ask if there is third-party reimbursement.
  
  
• Ask if the CAM practitioner would be willing to speak with your primary care provider about treatment recommendations, side effects, etc., and to forward your records to your primary care provider.
  
  
• Ask if it is possible for you to speak to patients who have been treated for the same problem by the CAM provider.
  
  
• Before you begin any type of CAM, review your overall treatment plan with your primary care provider to make sure that there are no potentially dangerous effects, like drug interactions. Discuss any questions or problems with him or her.

• If you begin CAM, begin one type at a time, and continue to keep your symptoms diary.
  
  
• At the end of the CAM treatment plan, (e.g., a short-term acupuncture treatment), review your symptoms diary with your primary care provider to evaluate the efficacy of the treatment.

These suggestions should help improve communication between you and your primary care provider, give you vital information about your health and treatment plan, and maximize your opportunities for optimal health care.

Guidelines for Evaluating CAM Treatments

Making well informed choices about what if any CAM therapies to use is critical. Learning about all the options available and evaluating their merits may be somewhat daunting, but it is not impossible, and it is crucial, since some treatments are fraudulent or dangerous. The following guidelines, adapted in part from a fact sheet from the Seattle Treatment Education Project (STEP), may help streamline the evaluation process.

• Look for published studies in reputable journals. Do not blindly accept someone's assertion that such studies exist. Request copies of the studies, or at least the reference for your own library search. For example, Phase I and II studies were conducted on ozone therapy -- the results were that no benefit was detected. Ask for assistance from a licensed professional in interpreting the results. For example, in vitro studies of CAM therapies are perhaps more common than in vivo studies. In this case, the agent has been evaluated in laboratory tests, rather than in the human body, and results have limited applicability to humans.
  
  
• Be wary of personal testimonials and anecdotal reports about a treatment's efficacy. Often, promulgators of fraudulent treatments manipulate statements from users of their products to suggest customer satisfaction. For example, they may describe a user's satisfaction one week after using a treatment but may not disclose subsequent complaints from the same user of either lack of efficacy or worsened health status.
  
  
• Speak with licensed professionals and unbiased sources before using any treatment. Often, the person promoting the treatment will not provide unbiased information since he or she stands to profit from the sale. Nor are friends or acquaintances usually the best source of information. They may be experiencing a placebo effect or seeking support for their own choices. Doctors, licensed acupuncturists, nutritionists and registered nurses may be useful sources of information. The California AIDS Fraud Task Force at 800-459-4503 is an excellent resource.
  
  
• Demand to know what any treatment really is and what its ingredients are. "Secret ingredients" are unacceptable.
  
  
• Be wary of claims about "cures" or "miracles." Demand proof.
  
  
• Be wary of treatments that promise to resolve multiple illnesses. A well established type of fraud is the claim that a treatment cures both cancer and HIV disease. Many people peddling fraudulent medical treatments were "in the business" before AIDS, when they were taking advantage of despairing cancer patients.
  
  
• Be wary of any treatment that requires discontinuing any other treatments in a regular regimen. Demand to see documentation, i.e., published information in reputable journals from studies, about treatment interactions, etc.
  
  
• Examine carefully reports of studies performed in developing countries, where standards and procedures may differ.

Resources for Researching CAM

In large part, the research process is likely to fall to the individual who is interested in a particular CAM therapy. Credible information, if it exists for any treatment, may be found by researching scientific literature at public and university libraries, medical libraries, on the Internet and other online computer services, and through the U.S. National Library of Medicine at the NIH. Many university and medical libraries can be accessed via the Internet. The OAM Clearinghouse publishes a fact sheet called "Alternative Medicine Research Using MEDLINE." The NIH itself has 24 different institutes, centers and divisions (ICD) that can provide information on specific diseases or medical conditions. The telephone number for the NIH is 301-496-4000; the receptionist can direct calls to specific ICD.

Public libraries contain books, journals and magazines that are sources of general nonscientific information on CAM. A helpful guide for this type of literature search called the Reader's Guide to Periodical Literature is available in most libraries. The Index Medicus is a similar guide that lists thousands of health science journals (usually found in medical and university libraries, and some public libraries). Bookstores may also have relevant books or periodicals.

The OAM advises people to continue gathering information even after a therapy and provider have been found; continue asking the practitioner about new research and findings, as well as the advantages and disadvantages, risks, side effects, expected results, and length of treatment. Ask to speak with people who have taken the treatment, particularly people with the same medical condition who have been similarly treated by the same practitioner.

CAM Treatment Access through Buyers' Clubs in the U.S. and Canada

AIDS buyers' clubs are a source of information about as well as access to many CAM therapies not available by prescription in the U.S. Mail orders are accepted by many.

Canada

Canadian Nutrition Club

613-284-0076 or 1-800-996-8466 in Canada. Fax: 613-283-9306. 275 Brockville St., Smith Falls, ON K7A 4Z6.

Supplements Plus

416-977-3088 or 1-800-387-4761. Fax:

416-977-3099. remedies@web.net. 317 Adelaide St. West #503, Toronto, ON

M5V 1P9.

Arizona

Being Alive Buyers' Club (program of AIDS Project Arizona)

602-265-2437. Fax: 602-265-9951. bealive@apaz.org. 111 E. Camelback Rd., Phoenix, AZ 85012.

Southern Arizona AIDS Foundation

520-322-6226. Fax: 520-327-9557. 151 S. Tucson Blvd. Ste. 211, Tucson, AZ 85716.

Colorado

Denver Buyers' Club (PWA Coalition Colorado)

303-329-9379. Fax: 303-329-9381. POB 300339, Denver, CO 80203.

California

Healing Alternatives Foundation

415-626-4053. Fax: 415-626-0451. info@healingalternatives.org. 1748 Market St., Suite 205, San Francisco, CA 94102.

LifeLink

805-473-1389 or 1-888-433-5266. Fax: 805-473-2803. lifelink@west.net. 750 Farroll Road, Suite H, Grover Beach, CA 93433.

Embrace Life

800-448-1170 or 408-464-7444. Fax: 408-476-7717. embrace@embracelife.com. www.embracelife.com. 2070-C Wharf Road, Capitola, CA 95010.

CFIDS and Fibromyalgia Health Resource

800-366-6056. Fax: 805-366-0042. health@silcom.com. 1187 Coast Village Road #1-280, Santa Barbara, CA 93108.

District of Columbia

Carl Vogel Center

202-638-0750. Fax: 202-638-0749. 1012 14th St. N.W. #707, Washington, D.C. 20005-3405.

Florida

AIDS Manasota

941-954-6011. Fax: 941-951-1721. 2080 Ringling Blvd., #302, Sarasota, FL 34237-7030.

Wholesale Health

954-764-1587 or 1-888-666-6743. Fax: 954-764-2393. 909 NE 18th St., Ft. Lauderdale, FL 33305.

Health Link

954-565-8284. Fax: 954-565-8289. 3213 N. Ocean Blvd. #6, Ft. Lauderdale, FL 33308.

Georgia

AIDS Treatment Initiatives

404-874-4845. Fax: 404-874-9320. 828 W. Peachtree St. NW, Suite 210, Atlanta, GA 30308.

Massachusetts

Boston Buyers' Club

800-435-5586 or 617-266-2223. Fax: 617-450-9412. 29 Stanhope St., Boston, MA 02116.

New York

DAAIR

212-725-6994 or 1-888-951-LIFE (outside New York State). Fax: 212-689-6471. info@daair.org. 31 E. 30th St., Suite 2A, New York, NY 10016.

PWA Health Group (they have a Women's Treatment Project).

212-255-0520. Fax: 212-255-2080. 150 W. 26th St., #201, New York, NY 10001.

Acupuncture and Chinese Medicine Resources and Referrals

If you are interested in Chinese medicine or another type of CAM, first talk to your primary care provider for a referral and about potential CAM therapies. Medical and public libraries, as well as bookstores are good places to find information about CAM.

For licensing requirements for any given state, contact:

National Certification Commission for Acupuncture and Oriental Medicine

PO Box 97075
Washington, DC 20090-7075
202-232-1404

The following agencies can provide referrals to local Chinese medicine practitioners:

American Association of Oriental Medicine

433 Front Street, Catasauqua, PA 18032
610-266-1433

California Association of Acupuncture and Oriental Medicine

1231 State Street, Suite 208-A
Santa Barbara, CA 93101
888-432-5669 (in CA only) or 805-957-4384

Institute for Traditional Medicine

2017 SE Hawthorne Street, Portland, OR 97214
503-233-4907

The following organization can provide referrals to medical doctors who also practice acupuncture:

American Academy of Medical Acupuncture

5820 Wilshire Boulevard, Suite 500
Los Angeles, CA 90036
213-937-5514

For other types of CAM, such as chiropractic, naturopathy or homeopathy, various medical regulatory and licensing agencies in your state may provide information about a specific practitioner's credentials and training. The Office of Alternative Medicine Clearing-house has several fact sheets on CAM.

Selected Sources

Abrams DI. Dealing with alternative therapies for HIV. Chapter 8, pp. 111-128, in The Medical Management of AIDS, 3rd edition. MA Sande and PA Volberding, eds. WB Saunders Company, Philadelphia, PA. 1992.

Berrier J and others. Use of complementary/alternative therapies by HIV + women: the womenÕs interagency HIV study (WIHS). XI International Conference on AIDS. Vancouver, BC. July 1996. Abstract Th.D.5120.

Gorman C. Vitamin overload? Time 84. November 10, 1997.

Jonas WB. Researching alternative medicine. Nature Medicine 3(8): 824-827. August 1997.

Project Inform Discussion Paper #3. Doctor, patient and HIV: building a cooperative relationship. San Francisco.

Romeyn M. Nutrition and HIV: A New Model for Treatment. Jossey-Bass Publishers, San Francisco. 1995.

Standish LJ. Alternative medicine in HIV/AIDS: current state of the science and justification for research. February 1996.

Page last updated 16 January 1998