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Introduction
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).
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 1
Figure 3
Results
Conclusions
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.
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.
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.
Table 1
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-acetylcarnitine
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
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.
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):10021018.
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)