42x90 Horizontal Poster

1
ADRLH-66 Complementary Therapy Use in HIV
people An Online Community Survey Nelson Vergel,
Program for Wellness Restoration, Houston,
Texas powertx_at_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 gt40 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
Supplement Reported Perceived Benefits in Open-Ended Answers
Multivitamins and B vitamins 74 To increased energy
Fish oils 38 To decrease lipids
L-carnitine and L-acetyl-carnitine 31 To improve fatigue, lipids, brain function and neuropathy
Coenzyme Q-10 30 To improve fatigue, prevent statin-related muscle myopathy, and to protect the heart
Selenium 27 Antioxidant for increased CD4 cells
Vitamin D 3 25 To prevent or reverse bone loss
Creatine 21 To build muscle
Probiotics 20 To decrease diarrhea
DHEA 19 To increase energy, sexual function and brain function
Whey Protein 15 To build muscle
N-acetyl-cysteine 15 Antioxidant to increase CD4 cells
Niacin 12 To improve HDL cholesterol
Alpha lipoic Acid 10 Antioxidant to improve glucose control and neuropathy
S-adenosylmethionine (SAM-e) 10 Antioxidant to improve fatigue, depression, liver function
Figure 1
References

1. 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
2.  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.
3. 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
4. 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)