Most of us take steps to improve and maintain our health. Our beliefs about health can lead to far-reaching behaviors that may create a more holistic health lifestyle, but sometimes we choose individual health practices that make us feel better now or that we think will help us feel better down the road. Sometimes, these behaviors are guided by conventional health care providers, such as physicians, pharmacists, and chiropractors. Sometimes providers recommend these approaches based on medical knowledge or research we don't know about. Often, such practices become accepted as common sense and are largely taken for granted as the things everyone should do.
But sometimes we seek care from practitioners of complementary and alternative medicine (CAM) who are not part of the conventional health care system. And sometimes we take care of ourselves with limited or no input from any type of health care provider at all. Such self-care might come from folk or family remedies, or from something we heard on the news, from a friend, or on the internet. Taking action to improve our health feels right, even when we don't have evidence that what we are doing will work. Belief and science don't always align, but when it comes to our own health and well-being, who said they had to?
People with HIV need to be vigilant about maintaining their health. In addition to standard HIV treatment, many use CAM to deal with HIV-related symptoms, treatment side effects, pain, and to improve their quality of life. Although estimates vary, two reviews of a range of studies concluded that 60% of people with HIV use CAM. Given that large number, it is useful to ask what CAM is, who uses it and why, how well its use is integrated into conventional medical care, and if there are risks we need to be concerned about?
What is CAM?
The National Center for Complementary and Alternative Medicine (NCCAM) defines CAM as a group of diverse medical and health care systems, practices, and products that are not considered part of conventional medicine. It defines complementary care as CAM use in conjunction with conventional medical care, while alternative care is defined as CAM use in place of conventional care. Generally, complementary care is much more common than alternative care, which studies suggest is now quite rare. Integrative care refers to the combined use of conventional medical care and CAM for which there is evidence of safety and effectiveness.
A broad range of activities and practices may be considered CAM. The NCCAM distinguishes four distinct domains of CAM:
- Biologically-based practices
- Manipulative and body-based practices
- Mind-body practices
- Alternative medical systems
Biologically-based practices, which are the most commonly used, include the use of herbal products and dietary supplements, such as high doses of vitamin C or other vitamins, herbal or mineral supplements, probiotics, teas, and supplements like garlic. For persons living with some chronic diseases, including people with HIV, marijuana use to manage weight loss, nausea, and pain is relatively common. Manipulative and body-based practices that often have stress-reducing effects include massage therapy, manipulation, and other bodywork. Mind-body practices that reduce stress and enhance feelings of well-being include meditation, prayer, hypnosis, and yoga. Alternative medical systems include naturopathy, acupuncture, and homoeopathy. Some types of CAM are more likely to be provided by a CAM practitioner, while others are more likely to be used as a form of self-care.
Who Uses CAM?
CAM is widespread among Americans in general, and people with HIV in particular. One recent national study estimated that 38% of Americans had used CAM within the past year, and many more had used CAM at some point in their lives. Rates of use were highest among those aged 50-59 (44%). CAM use among people with HIV is higher than it is among Americans overall -- about 60%.
Among people with HIV, CAM use is particularly high among men who have sex with men, non-minorities, those with higher education, and those with higher incomes. People with AIDS, those living with HIV longer, and those with more HIV-related symptoms are also more likely to use CAM. Some evidence indicates that people who seek social support, engage in problemfocused coping, and use positive reinterpretation (finding the best in a bad situation), are more likely to use CAM. Such coping strategies might promote well-being and contribute to the oftenobserved beneficial association between higher levels of CAM use and lower levels of depression, psychological distress, and mental health problems.
Self-Care vs. Integration
In the early years of the HIV epidemic in the U.S., when there were few effective therapies and people were literally fighting for the lives, there was a widespread belief that "you have to be your own doctor." In those years, building on social, cultural, and family practices that were in place before the HIV epidemic, many people advocated for HIV self-care that often involved the use of CAM. As better HIV treatments have become available, many people have continued using CAM in conjunction with conventional treatment. Most of the evidence shows that only a very small minority use CAM as an alternative to standard HIV therapy, so it is important to consider how often and how well conventional care and CAM are integrated.
It has been suggested that the response of the medical profession to CAM has shifted from condemnation to reevaluation, integration, and, perhaps, cooperation. But evidence from the 2007 National Health Interview Survey (NHIS) suggests that we might not have traveled as far down the path of integration as needed. That study found that only 42% of all Americans disclosed their CAM use to their physician.
In studies of people with HIV, disclosure of CAM use ranges from 38% to 90%. We do not know, however, what people with HIV discuss with their health care providers or the extent to which holistic, coordinated care is accessible. Based on how often Americans generally discuss their CAM use with their physicians, we can presume that such coordination is not generally available. Integrative care, as defined by the NCCAM, is limited by the fact that people often do not discuss CAM with their health care providers for a variety of reasons. Also, conventional and CAM practitioners often do not coordinate care, and there is limited research on the safety and effectiveness of commonly used CAM therapies.
In a chronic disease like HIV, health practitioners often consider a broad range of behaviors to be CAM. Conventional providers are likely to pay more attention to some forms of CAM than to others because some have the potential to undermine other treatments. Concern about whether particular forms of biologicallybased CAM undermine HIV treatment echoes throughout the research literature, even though limited evidence on adverse effects currently exists.
In one national study from 1997, approximately 26% of persons in conventional care for HIV were using CAM that had the potential for adverse effects. The NCCAM includes some warnings on its website that are relevant to HIV care. For example, they report that garlic supplements sharply reduced blood levels of Invirase, and that St. John's wort could significantly lower the effectiveness of Crixivan. St. John's wort probably also changes the blood levels of other drugs that are broken down by the liver, such as Sustiva, Reyataz, and Kaletra. Many people with HIV may be using CAM treatments that interact with the medications they are taking. It's very important that people discuss their CAM use with their doctors, and providers need to make greater efforts to integrate conventional care and CAM.
CAM in Older Adults