Table 1

1. ADRLH-66 : Complementary Therapy Use in HIV+ people: An Online Community Survey Nelson Vergel, Program for Wellness Restoration, Houston, Texas powertx@aol.com, powerusa.org Table 1 Introduction Figure 3 Results Conclusions Complementary and alternative medicine (CAM) is a group of diverse medical and health care systems, practices, and products that are not considered part of conventional medicine. The use of complementary therapies is common in people with chronic illnesses, including human immunodeficiency virus (HIV) infection. However, several concerns arise from their use, such as lack of controlled efficacy data, potential liver toxicity and other side effects, unknown interactions with HIV antiretrovirals, and lack of strict regulations on purity and potency. Furthermore, out-of-pocket weekly expenses for a supplement regimen can cost anywhere between $25 and $40 dollars (1). Previously published surveys indicate that CAM use is more common among HIV+ individuals with greater education and financial resources (2). CAM users are more likely to have experienced symptoms of HIV disease progression and to have longer disease duration (2). The objective of this survey was to determine the types of complementary therapies and nutritional supplements used by HIV-positive people who access the listserve pozhealth at yahoogroups.com , a web-based support group with 3400 members and TheBody.com, one of the largest HIV-related web sites in the U.S. (with more than 700,000 visitors a month).  As of October 2009, 513 HIV-infected people participated in the survey. The majority were males >40 years of age residing in the United States. 26% were non-white and 50% had been diagnosed for less than 10 years. 89% currently use complementary therapies. As shown in Figure 1, the most common therapies used were: nutritional supplements (88%), exercise (69%), prayer/spiritual approaches (33%), massage (32%), herbs (31%), meditation (24%), yoga (17%), acupuncture (16%) and chiropractic (12%). As shown in Figure 2, most participants expressed the belief that these therapies benefited them. Figure 3 details the reasons participants gave for their use of the various therapies, with “to increase energy” being the most common one, followed by “to increase CD4+ cells,” “for stress management,” “to lower triglycerides and lipids,” and others. The most common nutritional supplements and expected benefits are listed in Table 1. The use of several of these supplements was also reported in a previous survey(3). Limited data on most of these supplements are available from small proof-of-concept uncontrolled studies. Unlike other surveys (4), most participants discussed their use of complementary therapies with their HIV physician. However, many physicians do not have enough training in CAM to be able to properly advise patients on risks and benefits. Despite the inherent limitations and possible biases of self selection and the limited survey population, the use of complementary therapies remains widespread among patients living with HIV infection in the United States even with the availability of effective anti-retroviral therapy. As there is an overwhelmingly positive perception by patients of their benefits, the use of complementary therapies is likely to continue. Of special concern are the limited HIV-related data on several of these modalities and lack of interaction studies between the most common supplements and HIV antiretrovirals. Recommendations It is recommended that the most commonly reported supplements be included in pharmacology reviews and interaction studies in pre- and post- approval drug development protocols of new and existing HIV antiretrovirals. This survey also reveals that patients are seeking non-prescription options for a perceived control of their health and to increase stamina, CD4+ cell counts and to minimize side effects of medications. Further research on the reported options should be encouraged. Furthermore, patient and provider education programs on complementary therapies are needed to provide an update of current efficacy data and to avoid potential toxicities, interactions, and waste of patients’ financial resources. Methods A link to a survey with 13 multiple-choice and open-ended questions was posted in pozhealth at yahoogroups.com and TheBody.com asking people to share information about demographics, time since diagnosis, type of complementary therapies and supplements used, and perceived benefits. The survey was publicized for four months in 2009. It is a work-in-progress, with more people participating as time progresses. Participation is voluntary and anonymous. . Figure 2 Figure 1 References Leeb, K et al. Complementary therapies for HIV: a significant part of out of pocket expenditure. In: Program and abstracts of the International Conference on AIDS.1998; Abstract 24132. HIV Ontario Observational Database, Toronto, ON, Canada Littlewood , R et al. Complementary and Alternative Medicine Use Among HIV+ People: Research Synthesis and Implications for HIV Care . AIDS Care. 2008 September: 20 (8):1002-1018. Sansevero, M et al. Nonvitamin, Nonmineral Dietary Supplementation in HIV-Positive People.Nutrition for Healthy Living (NFHL) . Nutrition in Clinical Practice. 2007. 22 ( 6): 679-687 Aghdassi, E et al. A Survey on the Usage of Supplements in Canadian Patients Living with HIV. Current HIV Research. September 2009 , 7 (5): 555-561(7)