Stigma, Depression, Isolation Common Among People With HIV or AIDS

Norra MacReady

July 27, 2010

July 27, 2010 (Vienna, Austria) — Three decades into the AIDS pandemic, HIV-positive patients continue to experience disease-related stigma, depression, and isolation, according to an international survey of more than 2000 people presented here at AIDS 2010: XVIII International AIDS Conference.

Nearly half of all the respondents said they had encountered someone who was afraid to have casual contact with them because of their infection with HIV or AIDS, and 1 in 4 reported that someone would not kiss them or share food or drink with them. These reactions to people with HIV/AIDS reflect still relatively widespread beliefs in many countries that HIV or AIDS is easily transmitted through everyday activities, and that people with HIV or AIDS should be avoided, researchers noted.

Although 96% of the respondents said they had disclosed their HIV or AIDS status to at least 1 other person, 17% in a long-term relationship admitted they had not told their spouse or partner.

The findings come from the AIDS Treatment for Life International Survey 2010, which looked at attitudes and perceptions of HIV among 2035 HIV-positive people in 12 countries on 5 continents. The main goals of the survey were to observe how people around the world live with HIV infection and AIDS, how social and cultural factors affect their lives, and how patients interact with their primary healthcare providers.

These issues are important because they "globally affect HIV prevention, testing, care, and treatment," said Suniti Solomon, MD, who reported the findings in an oral abstract session.

"An environment of tolerance in which an individual can take an HIV test and live with an HIV diagnosis is of paramount importance to effective HIV prevention and treatment programs at local and national levels," said Dr. Solomon, who is director of the Y.R. Gaitonde Center for AIDS Research and Education in Chennai, India.

The survey also found that 64% of the patients had at least 1 comorbidity, including sleep disorders, gastrointestinal problems, and hepatitis C; 26% of the patients had 3 or more comorbidities. About 50% of all the respondents also said they had discussed depression with their healthcare providers.

The information was obtained through 20-minute telephone or face-to-face interviews or over the Internet. To be included in the survey, participants had to be at least 18 years old, diagnosed with HIV or AIDS by a primary healthcare provider, and have taken antiretroviral therapy (ART) within the last 5 years. All in all, 53% of the respondents had been on ART for more than 5 years, and 97% were currently on an ART regimen.

More than 1 in 3 — 37% — of all the participants agreed with the statement, "I often feel alone and isolated because I have HIV or AIDS," including 52% of the respondents in Asia-Pacific regions, 42% in North America, and 41% in Latin America. People in Asia-Pacific countries appeared to feel especially isolated, with 40% saying their friends and families did not really understand HIV or AIDS, and 43% saying they felt like a burden to their families and friends — the highest percentages of patients agreeing with those statements.

"Many of us who work with AIDS patients knew this instinctively, but it's disheartening to see [these problems] quantified in this way," said Mary Guinn Delaney, regional HIV and AIDS advisor with the Regional Bureau for Education in Latin America and the Caribbean of the United Nations Educational, Scientific, and Cultural Organization. "It certainly gives us an idea of how much more work we have left to do," said Ms. Delaney, who was not involved in the research.

ATLIS 2010 was funded by Merck & Co, Inc, on behalf of the International Association of Physicians in AIDS Care. It was conducted by Kantar Health, a healthcare marketing company. Neither Dr. Solomon nor Ms. Delaney has disclosed any relevant financial relationships.

AIDS 2010: XVIII International AIDS Conference: Abstract THLBD104. Presented July 22, 2010.

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