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?
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, 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.
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.
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.
It is estimated that by 2015, 50% of people with HIV in the U.S. will be over 50. As more people are aging with HIV, they are encountering the chronic health conditions that become more common at older ages. As a result, they are experiencing more complicated medication regimens. With increasing numbers of medications, the potential for interactions among conventional and CAM treatments increases.
Recognizing this potential, the American Association of Retired Persons (AARP) and the NCCAM teamed up in 2010 to examine CAM use among adults over 50. They found that 53% of older adults had used CAM and 47% had used it in the past year. Use of herbal and dietary products, which are most concerning from the standpoint of adverse effects, was the most common type of CAM reported (37%). Among those who had ever used CAM, 78% were using at least one prescription medication at the time of the survey, while 37% were using four or more medications. Among all older adults, 33% had talked with any health care provider about CAM. Among CAM users, that rate almost doubled to 58%. People who discussed CAM with a health care provider were more likely to talk about it with their physician than with any other type of provider, and they were much more likely than the health care provider to bring up the topic.
Among those who talked about CAM with a health care provider, the conversation focused on:
Among individuals who did not talk with their health care provider about CAM, a variety of reasons were cited:
Researchers from Syracuse University and ACRIA used data from ACRIA's Research on Older Adults with HIV (ROAH) study to examine CAM use among people with HIV who were over 50. ROAH found that 28.8% of the sample reported CAM use, including:
Consistent with prior research, whites and people with higher education, higher incomes, higher levels of pain, and lower levels of depressive symptoms were more likely to use CAM.
Among those who used CAM:
Among CAM users, use of body-based CAM was higher among women, LGBT people, and those taking HIV medications. Use of mind/body-based CAM was higher among LGBT people, those who felt they were in worse health, and those who were not taking HIV medications. Finally, use of biologically-based CAM was higher among non-LGBT people, whites, Hispanics, employed persons, people on Medicare, and people not taking HIV medications. These complex patterns reflect the diverse social and cultural influences on CAM use, as well as the fact that some individuals use CAM to enhance existing health and well-being while others use CAM to manage pain, symptoms, and the side effects of treatment.
The high levels of CAM use among people with HIV are likely to continue, and many CAM health behaviors most likely pose no risks. They are practices that can reduce stress, build fitness, and promote well-being. It is not clear that they need to be considered "medicine." Stress reduction may affect immune function, but these practices are part of a healthy lifestyle and need not be medicalized.
High levels of CAM use among people with HIV are likely to continue, and many CAM health behaviors most likely pose no risks. They are practices that can reduce stress, build fitness, and promote well-being.
However, some forms of biologically-based CAM may pose risks of drug interactions that could undermine health. More research is needed to determine which of these are safe and effective and which are not. More efforts need to be made to make sure that state-of-the-science information about the safety and efficacy of CAM is available to people with HIV. Health care providers must start conversations about CAM and be able to answer questions about it.
The NCCAM defines integrative care as the combined use of conventional medical care and CAM for which there is evidence of safety and effectiveness. This is a worthy goal to pursue for the sake of holistic health and well-being.
Andrew S. London is Chair and Professor of Sociology, and Co-Director of LGBT Studies, at Syracuse University.