Use of Complementary and Alternative Medicine by HIV/AIDS Patients

GUJHS. 2004 April; Vol. 1, No. 3

MansiS. Shah, NHS‘04

mss6@georgetown.edu

Introduction

The disease caused by Human Immunodeficiency Virus (HIV) that progresses to Acquired Immunodeficiency Syndrome (AIDS) does not have a cure, even after more than twenty years of its introduction to the world. There are a wide variety of conventional, effective antiretroviral medications (ARV) that have been produced to combat HIV/AIDS, yet there are many concerns associated with the ARVs (2). Therefore, a significant number of HIV/AIDS patients look towards complementary and alternative medicines (CAM) as adjunct therapy. HIV/AIDS patients use many types of CAM such as: meditation, acupuncture, diet therapies, herbal medicine, and imagery/visualization. The reasons these patients often take CAM may be due to: an expectation of a cure, reduction in symptoms from HIV/AIDS, reduction from ARV side effects, or a desire for increased control over the disease process (5). Most patients find that CAM increases their quality of life, feeling of well-being, sense of dignity, power, and control (9). However, many patients do not communicate with their healthcare provider of their use of CAM, nor do the providers ask patients about their use of CAM, resulting in a chance for interaction with the ARV medications, adverse reactions of CAM, or other unforeseen problems that may arise in the future (7). It is therefore critical for HIV/AIDS patients and their providers to openly communicate about the use of CAM. Over the years, CAM usage seems to be on the rise and it is likely that patients will continue to use CAM until a cure for HIV/AIDS is developed (5). Thus, it is very important that further studies be conducted on the efficacy and implications of different CAM therapies in HIV positive individuals.

Current ARV Treatment

The current treatment for HIV/AIDS patients is administration of a cocktail of antiretroviral drug therapies. These therapies have resulted in a reduction of the viral burden by slowing down the replication of HIV, improving short-term survival, and increasing CD4 positive lymphocyte cell count (1,2). However, there are many concerns with ARV medication. The long-term benefits of these treatments have yet to be demonstrated, the medicines induce significant side effects, not all patients respond to treatment, viral resistance is increasingly becoming a problem, the rigid and complex dosing regimen makes long-term compliance very difficult, drug access is limited because of high costs of ARVs, and there is no definitive cure in the near future (3). Quality of life is often compromised in order to treat HIV aggressively (1). Thus many HIV/AIDS patients look to therapy that is outside the realm of traditional medicine because of the concerns that are raised due to ARV medications.

Complementary and Alternative Medicine (CAM)

Complementary and alternative medicine has been broadly defined as “those treatments that have not generally been promoted and taught in Western medical schools and that have not generally been available at Western hospitals and clinics (6).” They have been described as therapies that involve the mind, body, heart, and spirit (3). They are also seen as unconventional or unorthodox (10). These therapies are often difficult to define since they encompass such a wide variety of practices, and thus they are difficult to analyze collectively under CAM. Nonetheless, in the studies that have been conducted, a large range (18% to 100%) of HIV/AIDS patients had used CAM at some point (3, 10). The wide range of percentages of HIV/AIDS patients that used CAM is due to the various broad definitions of CAM in the studies; however, they still demonstrate that CAM use is significant among HIV/AIDS patients.

Types of CAM

The types of CAM that were mentioned most frequently in the studies were: herbal medicine, relaxation therapy (meditation), megavitamin therapy, imagery/visualization, and touch therapy (acupuncture and massage). For those patients who used herbal medicine, the most common medicine used was ginseng, but garlic root, ginger root, rutin, Chinese green tea, and aloe vera were also used. Some patients used relaxation therapies, most notably meditation, along with the burning of incense and chanting of mantras in order to relieve stress and its ill effects on the immune system. Megavitamins and mineral therapy were used by thirty percent of the nontraditional users in another study, mostly in the form of high-dose vitamin C, vitamin E, selenium, and zinc. (8) Imagery/visualization is a CAM therapy “for HIV-positive individuals that endeavors to empower them, to teach them to live with their disease, and to take an active part in improving their condition (4).” This method is successful by the development of mental images of a strong and healthy immune system fighting off the HIV and by visualizing pictures that help them to see how to overcome the disease. These methods were seen to increase the livelihood of the patients and decrease their depression and tension. (4) Acupuncture and massage providers were the most commonly reported CAM providers visited by one study’s HIV positive population, with 24% and 38% of the study population receiving acupuncture and massage therapy, respectively, at some point (6). One study that tested the effects of massage therapy alone and in combination with other complementary therapies found that the use of massage therapies and stress management together favorably altered health perceptions and led to less utilization of healthcare services.  This could suggest that HIV positive individuals who receive massage therapies and stress management might tend not to over utilize healthcare services, thus possibly reducing the frequency of ailments and healthcare costs. (1) Overall the different types of CAM use various mechanisms, but all of them have the same concept of providing some sort of relief for the HIV/AIDS individual.

Factors For CAM Use

There are many factors involved as to why HIV/AIDS patients would use CAM as an adjunct therapy, besides the concerns that are correlated with ARV treatment. Diagnosis of an illness with the magnitude of HIV can be psychologically devastating. Feelings such as fear, despair, hopelessness, loss of control, and inadequate coping skills are factors leading HIV positive individuals to gravitate towards CAM usage (8). Many patients seek CAM to deal with the anxious and depressed feelings that are concomitants of HIV/AIDS (1). Patients may be dissatisfied with or show a negative attitude towards the effectiveness of the conventional ARV medicine, desiring more involvement in their own healthcare decisions, and thus are more likely to use CAM. Patients that also had a greater desire for medical information were more likely to use CAM. This fact points out the need for the healthcare setting to be more conducive to open discussion about CAM usage and patient involvement in fighting the disease. (7) Moreover, the most commonly reported reasons for using herbs, vitamins, and supplements were to fight infections or boost immunity (25%), and to treat weight loss, nausea, and diarrhea (23%) (6). And the most commonly reported reason for visiting a CAM provider was for the relief of pain and neuropathy (33%), and to reduce stress and depression (27%) (6). In another study, relaxation and exercise therapies were practiced to deal with dermatological conditions, nausea, depression, insomnia, and weakness (9). The need to discontinue ARV therapy– which may be related to the resistance built up against the ARVs, the complex regimen leading to non-compliance, or high costs– has also led HIV/AIDS patients to use CAM (5). CAM providers believe that CAM was 69% and 73% effective in slowing progression to AIDS and in extending survival, respectively. Both of these factors are critical for HIV/AIDS patients, and thus may increase the percentage of patients using CAM and believing in CAM’s benefits (2). It can therefore be said that HIV/AIDS patients have a variety of reasons to seek CAM therapy to ultimately and positively change their quality of life.

Psychological Effects of CAM

Although the various CAM therapies differ in mechanism, they share the same concepts. “Alternative therapies conceptually recognize an interrelationship between mental and physical health, thus recruiting patients’ self-belief and psychic capacity to counteract illness and enhance the recuperative process”(8). The CAM concept of an illness being a symptom of an underlying dysfunction or toxic state is a more appealing view than the traditional concept of an illness being a disease entity.  Moreover, conventional medical therapy is seen as unpleasant, non-efficacious, and even toxic. Patients using CAM versus those using conventional therapy only were more involved in their care and treatment, had a greater sense of control, were more assertive, and exhibited more hopeful thoughts about their future. It is important to understand that greater involvement in self-care imparts a sense of dignity, power, and control, all of which provide coping mechanisms in dealing with HIV/AIDS. Users of CAM felt a greater community-based AIDS group support and great social support of family and friends, which may suggest that these support systems may be providing sources of information about CAM (8). CAM users found therapies quite effective, reporting substantial benefit from the use of CAM, whether it was used alone or in combination with conventional therapy (6). Of those patients that use CAM, 90% claimed their therapies were “somewhat” to “very effective” (2). A majority of CAM users said that CAM was as or more effective than their conventional treatment (9). However, this statement cannot be taken as completely accurate since most HIV positive patients that use CAM also use conventional therapy, and the effectiveness of one may be due to the other or to the combination of the two. Overall, however, CAM users do feel an improvement in such things as daily living, including self-care, less frequency of sickness, less pain, and mental health (5).

Patient-Physician Interaction

Although CAM use is significant in the HIV/AIDS population, the studies have revealed that patients do not discuss their alternative medicine with their conventional medical practitioners. This is often because their physicians never asked the patients about their use of CAM (10). Thus physicians should openly ask about CAM use to prevent adverse effects, to determine if patients are substituting CAM for conventional therapy and the reasons for this, and to determine the efficacy of CAM. Individuals who had a greater desire for medical information and decision-making were more likely to use CAM but less likely to discuss CAM with their provider. It is estimated that one half of the patients who used any type of CAM had not discussed this with their healthcare provider. (7) The majority of CAM therapy users (50-72%) were fearful of admitting the use of unproven and unscientific therapies to their physicians, feeling that communication of CAM would compromise their alliance with the physician (8). It is therefore very crucial for providers to understand patients’ desire to use CAM as a complement therapy to ARVs, to have knowledge of adverse effects of CAM and CAM-ARV interactions, and to display a nonjudgmental attitude towards CAM (7). Open communication will, in effect, enhance the patient-physician relationship and provide a better healthcare system for all those involved.

Conclusion

Several studies have indicated that CAM use is common among patients with HIV/AIDS and this may be reflective of the chronic, non-curative nature of the disease (5). Even with the availability of increasingly effective ARV therapy, CAM use may not diminish because it seems to provide patients with positive psychological factors such as a better sense of control over their disease process, more hope, and a better quality of life than does ARV therapy, which provides better immunological functions such as a decrease in viral burden and an increase in CD4 positive T cells. CAM therapy is as integral as ARV in the treatment for HIV/AIDS, and thus open communication between physicians and patients is critical to discuss CAM and ARV therapies to find the best possible treatment regimen for each individual patient, may it be CAM alone, ARV alone, or CAM and ARV combined. Therefore, further research needs to be conducted on the efficacy of different types of CAM and their implications in HIV/AIDS patients in order to provide the best possible care for those living with the incurable disease.