HIV stigma: a barrier for proper care

The feeling of stigmatization that people living with HIV often experience doesn't only exact a psychological toll -new UCLA research suggests it can also lead to quantifiably negative health outcomes.

In a study published in the October issue of the Journal of General Internal Medicine, researchers from the division of general internal medicine and health services research at the David Geffen School of Medicine at UCLA found that a large number of HIV-positive individuals who reported feeling stigmatized also reported poor access to care or suboptimal adherence to antiretroviral therapy (ART).

In fact, individuals who experienced high levels of internalized stigma were four times as likely as those who didn't to report poor access to medical care; they were three times as likely to report suboptimal adherence to HIV medications.

These findings were due, at least in part, to the poor mental health found among many of the participants. Researchers found that HIV stigma was one of the strongest predictors of poor access to medical care and that both HIV stigma and poor mental health predicted suboptimal adherence to medication. Adherence to HIV medications is already known to lead to better health outcomes, including survival, among people living with HIV.

"We were surprised to find that in our models, experiencing high levels of internalized HIV stigma was one of the strongest predictors of poor access to medical care, even after controlling for sociodemographics such as gender, race and ethnicity, income, insurance status, and clinical variables such as T-cell count and years since HIV diagnosis," said the study's lead investigator, Dr. Jennifer Sayles, an assistant professor of medicine at the David Geffen School of Medicine at UCLA and medical director of the Los Angeles County Department of Public Health's Office of AIDS Programs and Policy.

The study - one of the first to quantify how internalized feelings of stigmatization among people living with HIV negatively influence health outcomes - is available online at www.springerlink.com/content/71h5331844161x75/fulltext.pdf.

The findings demonstrate the urgent need for more community dialogue, education and awareness about HIV and the stigma that surrounds the disease, according to Sayles.

"It also highlights the need to address some of the social and contextual aspects of HIV for those living with the disease and to develop interventions that reduce internalized HIV stigma as a barrier to care and treatment," Sayles said.

The two-year study focused on 202 HIV-positive men and women in Los Angeles County, many of them minorities and many with limited incomes and limited education. Study participants completed anonymous surveys assessing internalized HIV stigma, self-reported access to medical care, their regular source of HIV care and ART adherence.

Overall, one-third of the participants reported experiencing high levels of stigma, and, on average, participants described experiencing or perceiving stigma slightly less frequently than "some of the time." Additionally, 77 percent of participants said they had poor access to care, 42.5 percent reported suboptimal adherence to ART and 10.5 percent reported having no regular source of HIV care.

The researchers point to some limitations in the study. They could not establish causality between internalized HIV stigma and negative outcomes - only a strong association between them. Also, the study did not directly measure social inequality, social support, self-efficacy and other similar covariates that may be related to HIV stigma. The study may also have missed people who do not access care or HIV services at all, given that study participants were recruited from community organizations providing outreach and social services to people living with HIV and from HIV clinical care sites. Finally, non-English speakers such as Latinos and Asian Americans were underrepresented in the sample.