Part of A Practical Guide to Complementary Therapies for People Living With HIV
People living with HIV/AIDS (PHAs) have a history of being active in their own health care. Since the HIV epidemic began, PHAs and their supporters have advocated for effective, available treatments. Rooted in the activism of the feminist and gay communities, AIDS activists promoted the idea that individuals living with HIV should not only have access to all potentially effective therapies but also the right to make informed choices about which treatments to use, including complementary therapies. Since Western medical science offered no cure and few treatments for AIDS, PHAs were open to other options, and a tradition of gathering and sharing treatment information began. Complementary therapies were particularly appealing to this community because they emphasize personalized treatment based on individual needs rather than standardized treatment for a specific diagnosis. This focus on individualized decision-making and treatment continues to be a valued part of complementary therapy for many PHAs.
Although we still have no cure, antiretroviral drugs have given many PHAs hope and renewed health. These drugs have also brought a new and daunting range of side effects, and, more and more, PHAs are looking to complementary therapies to cope. The result is that PHAs are increasingly making health decisions that integrate conventional and complementary approaches. Spurred on by the realities of difficult drug treatment schedules and side effects, the HIV movement is similarly increasing its focus on issues concerning quality of life. Many PHAs value treatment options that offer support beyond the physical impact of disease. Complementary therapies often offer a holistic approach. Holistic treatments explicitly connect the physical, mental, spiritual, emotional and sexual dimensions of life and promote the idea that healing must occur on all levels in order to take place on any one level.
These ideas are becoming part of the larger Canadian culture. Health promotion campaigns encourage Canadians to take charge of their own health and treatment decision-making. A resurgence of interest in spirituality has led many Canadians to look at health and well-being holistically and to connect physical health with the spiritual, emotional and mental aspects of life. The attitudes of government, conventional physicians and pharmacists are slowly changing, opening the way for the spread of more information about complementary therapies.
As well, increasing numbers of Canadians born outside of Canada are familiar with medical practices used instead of, or in conjunction with, conventional Western medicine in their country of origin. These immigrant communities have become valuable sources of complementary therapy practitioners for Canadians of all cultural backgrounds. PHAs from within these ethnocultural communities may think of the therapies called "complementary" in this guide as simply the expected norms of medical treatment. They may also draw additional strength from using therapies founded on their own spiritual and cultural traditions.
Here's one simple definition: those medical practices that fall outside conventional Western medicine. Complementary therapies include mind-body therapies, in which the power of the mind or the spirit is harnessed to heal the body. They also encompass touch therapies, which involve massage and other forms of physical manipulation performed by practitioners to promote healing. And they comprise physical agents that are eaten, inhaled or rubbed on the skin.
A specific complementary therapy may contain any or all of these elements. For example, aromatherapists use essential oils, which are inhaled or rubbed on the skin and are often used in massage. The process of heating and inhaling these oils includes a meditative component that many people think of as mind-body therapy.
Some people prefer the term alternative medicine to complementary therapies, and the abbreviation CAM (complementary and alternative medicine) is being used increasingly. Another term is complementary and alternative health care, or CAHC. These terms refer to the same spectrum of medical options. The words used reflect the different attitudes and experiences of the people speaking. For example, people who use the medical practices described in this guide instead of conventional Western medicines would be more likely to use the term alternative. The term complementary therapies implies that these treatments are used with conventional medicine. Still others use the term integrative medicine to strongly state the importance they place on integrating elements of conventional and complementary medicines into a more unified approach.
Knowledge based on individual stories rather than hard data is called anecdotal information. This information can be collected and shared by practitioners or (as often happens with PHAs) the people using the treatments. Anecdotal information is an important component of both complementary and conventional medicine. In conventional medicine, such observation may reveal new uses for existing treatments or identify unforeseen side effects.
In complementary medicine, anecdotal information is often recorded and compiled to form a base of information about the likely outcome of a treatment. Anecdotal information has limitations. It is based on the experience of individuals; how these experiences apply to others is often difficult to judge.
Although much of Western medical practice was developed from anecdotal information, the current standard for a Western medical treatment is a double-blind placebo-controlled trial. In such a study, a group of people with the same medical condition believe they are being given the same treatment. Placebos (fake treatments) are used by some trial participants, but no one knows who is getting the real treatment. The study is called double-blind because even the physicians and researchers who collect the results are not told which participants received placebos. This method is intended to eliminate biases based on the expectations of researchers and participants and to gather statistical evidence about how often we can expect the treatment to work. Some complementary therapies can and are being tested in double-blind placebo-controlled trials. This is particularly true outside of Canada. Unfortunately, various factors often hamper complementary therapies trials:
Practitioners and producers of complementary therapies rarely have the financial resources of a drug company. Even when they do, most complementary medicines can't be patented, so there is less financial incentive to pay for trials.
Western scientists skilled in performing controlled clinical trials are often skeptical about complementary medicines. Due to this skepticism, trials of complementary therapies do not build a researcher's prestige in the same way that a typical drug trial might.
Complementary therapy practitioners and users have not participated in many controlled clinical trials. As well, practitioners schooled in medical systems with established bodies of knowledge (such as traditional Chinese medicine) may see little need to re-examine these therapies to comply with Western medical standards. Western medical researchers, on the other hand, may see little need to study complementary therapies when a Western medical treatment exists.
A controlled trial requires a purified, consistent dose of the treatment. In the case of some complementary therapies, this purified form is not available. In others, practitioners and users believe the therapy is most effective in its natural "unpure" state.
Some solutions to these problems are emerging. Governments are now more willing to dedicate resources to the study of complementary therapies. For example, the federal government of Canada has targeted funding for research on natural health products through the Canadian Institutes of Health Research and through the Natural Health Products Directorate. Other research funds are also targeting complementary therapy research. In some cases, trial methods may need to be adapted to study complementary therapies effectively. All of these efforts will require collaboration between Western scientists and complementary therapy practitioners to produce reputable results.
In this guide, we discuss many different therapies and various types of practitioners. Only some of these practitioners are regulated by legislation. Health care, including complementary therapies, is regulated at the provincial level in Canada. That means provincial parliaments pass laws empowering governing bodies to set educational requirements and other standards for practitioners. In some cases, practitioners must be licensed, and only those holding a licence may practise. This is the case for chiropractors in most parts of Canada. Other professions have "protected title" legislation. For example, in Ontario, anyone can give a massage, but only those with specific credentials can call themselves registered massage therapists.
In each section of this guide, we give information about the regulations that apply to practitioners in that discipline.
When applicable, we outline education standards for practitioners, which readers may also use to judge unregulated practitioners. See Bonnie and Craig Harden's excellent book, Alternative Health Care: The Canadian Directory, for more information about the regulations that apply to complementary practitioners and an extensive listing of local and national professional organizations.
In response to growing concerns about the regulatory environment for herbal remedies, Health Canada developed a new regulatory framework for natural health products, which came into effect January 1, 2004.
This framework is the product of extensive consultation with a range of stakeholders. Previously natural health products were sold as either drugs or foods under the Foods and Drugs Act and Regulations. The new Natural Health Products Regulations call for improved labelling, good manufacturing practices, product and site licensing, and provision for a full range of health claims that will be supported by evidence.
The products that fall within the new Regulations include herbal remedies, homeopathic medicines, vitamins, minerals, traditional medicines, probiotics, amino acids and essential fatty acids. All natural health products in Canada require a product licence before being marketed. For site licensing, there is a two year transition period (2004-2005) and for product licensing, a six year transition period (2004-2009) for products who already have drug identification numbers (DIN). This will allow manufacturers, labellers, packagers, importers and distributors time to meet the new requirements.
Obtaining a product license will require detailed information on the product submitted to Health Canada, including medicinal ingredients, source, potency, non-medicinal ingredients and recommended use. Once a product has been assessed by Health Canada, the product label will bear a product licence number preceded by the distinct letters NPN, or, in the case of a homeopathic medicine, by the letters DIN-HM. The product licence number on the label will inform consumers that the product has been reviewed and approved by Health Canada for safety and efficacy.
With improved, standardized labelling, consumers will be able to make more informed decisions about the natural health products they buy. Labels will be required to specify directions for use, the recommended use or purpose (health claim), medicinal and non-medicinal ingredients, and any cautions, contra-indications or known adverse reactions associated with the product.
For further information on the regulatory framework, contact:
Natural Health Products Directorate, Health Canada
This guide is a brief overview of many complementary therapies used by PHAs. Estimates of the numbers of PHAs using these therapies vary widely according to who is studied, the questions they're asked and how the investigators define complementary therapies. For example, a recent study of the HIV Ontario Observational Database reported that 89 per cent of PHAs enrolled in its database used complementary therapies. A 1997 study described a random sample of PHAs living in British Columbia and reported that 39 per cent used some form of complementary therapy. Complementary therapy use appears to be increasing in Canada. At the 1999 Canadian Association for HIV Research conference, B.C. researchers reported that recorded use of complementary therapies among PHAs had effectively doubled in the last four years.
The reasons for complementary therapy use have also changed for PHAs. Before the introduction of combination drug therapies for the management of HIV infection, complementary therapies were mainly used to prevent opportunistic infections and boost immunity. With the introduction of highly active antiretroviral therapy (HAART) as an effective way to manage HIV infection, complementary therapies are now being used by PHAs to improve general well-being, reduce symptoms and manage the side effects of HAART. (The use of a range conventional and complementary therapies in the management of drug side effects is discussed in the CATIE publication, A Practical Guide to HIV Drug Side Effects for People Living with HIV.)
Recent studies indicate that almost all PHAs using complementary therapies do so in conjunction with conventional drug therapies (HAART). Combining complementary therapies with conventional drugs raises new challenges around the potential for adverse interactions between them. These interactions can lead to increased side effects and/or toxicity. They can also reduce the effectiveness of HAART, possibly leading to drug resistance and treatment failure. It is therefore important to discuss your use of complementary therapies with your doctor and pharmacist, as well as your use of drug therapies with your complementary therapist.
This Practical Guide is part of a series and is meant to be used in conjunction with the other guides. The other titles are:
CATIE's publications are available free.
This article was provided by Canadian AIDS Treatment Information Exchange. Visit CATIE's Web site to find out more about their activities, publications and services.