HIV-positive women in the United States face strikingly high levels of stigma

Apr 1 2008

HIV-positive women in the United States face strikingly high levels of stigma, according to survey results released by amfAR, The Foundation for AIDS Research.

The amfAR survey results will be presented at a press conference on Monday, March 31, at 9 a.m. at the National Press Club's 13th Floor First Amendment Lounge, 529 14th St. N.W., in Washington, D.C. The press conference will be followed by a briefing in which panelists will offer personal and professional perspectives on HIV-related stigma among women.

The results of the survey reveal pervasive negative views of HIV-positive women and a high level of discomfort in interacting with them. Many of the responses display a lack of knowledge of how HIV is transmitted and misplaced fear of contracting the virus that indicate a pressing need to scale up prevention education efforts.

Sixty-eight percent of respondents indicated that they would be somewhat or not at all comfortable with an HIV-positive woman as their dentist; 59 percent said they would be somewhat or not at all comfortable with an HIV-positive woman serving as their childcare provider; and 57 percent said they would be somewhat or not at all comfortable having a female physician who is HIV-positive. One in five respondents would be somewhat or not at all comfortable having a close friend who is HIV positive.

Only 14 percent of respondents felt that HIV-positive women should have children. Currently medication exists to prevent mother-to-child transmission of HIV.

The survey also demonstrates significant differences in how Blacks, Hispanics and Caucasians perceive HIV/AIDS and the risk of acquiring it. Of those who know someone with HIV or AIDS, Blacks (34 percent) and Hispanics (32 percent) are much more likely to have a family member with HIV/AIDS than Caucasians (13 percent).

Insights were also gained into public attitudes about HIV testing. Nearly 40 percent were sure they had not been tested for HIV. A majority (80 percent) of these respondents indicated that they did not need a test either because they “knew” they did not have HIV or because they didn't think they needed to be tested.

However, respondents overwhelmingly supported expanded HIV testing and 65 percent support making HIV testing part of standard routine healthcare. This acceptance may be partially linked to the belief that HIV testing occurs more frequently than it does, with 67 percent mistakenly assuming that they are automatically screened for HIV when they are tested for other sexually transmitted infections. Fifty percent believed that women are automatically tested during prenatal exams.

The survey draws much needed attention to the plight of women living with HIV/AIDS. Forty-six percent of people with HIV/AIDS worldwide – about 15.4 million – are women and girls. In the United States, women account for 27 percent of new AIDS diagnoses, up from only eight percent in 1985. Both domestically and internationally, women continue to face widespread social and gender inequalities that can make it difficult for them to reduce their risk of HIV infection. In addition, women are biologically more susceptible to HIV infection than men.

“In the minds of many people, AIDS in the United States is no longer a crisis,” said Rear Admiral Susan J. Blumenthal, M.D., M.P.A., amfAR's senior policy and medical advisor and former deputy assistant secretary for women's health in the U.S. Department of Health and Human Services. “Complacency has obscured the changing face of the epidemic and the dramatic rise in HIV infections in women over the past 25 years. These results should serve as a wake-up call for action across all sectors of society. We need to intensify efforts for science-based education and policy to shatter the stigma that has surrounded this disease for all too long.”

The online survey, conducted by Harris Interactive for amfAR, questioned nearly 5,000 respondents ages 18-44 and covered HIV risk and responsibility, impact of gender-based violence, and women's access to healthcare and health information, as well as attitudes towards HIV-positive women. The survey was made possible by grants from Broadway Cares /Equity Fights AIDS and the M•A•C AIDS Fund.

The March 31 briefing will feature presentations by international AIDS activist Marvelyn Brown; Regan Hofmann, Editor of POZ Magazine; Helen-Maria Lekas, Ph.D., Assistant Professor of Clinical Sociomedical Sciences at Columbia University's Mailman School of Public Health; and Laura C. Nyblade, Ph.D., Senior Social Scientist, HIV and Stigma, at the International Center for Research on Women. The briefing will be moderated by Dr. Blumenthal.

“Many women erroneously believe that they are not at risk for HIV,” said Hofmann, who is HIV positive. “This is why we are seeing the rate of new infections for women rise significantly in America. While many women accept that they could potentially become pregnant from even just one act of unprotected sex, they feel that they would have to do something ‘extraordinary' to contract HIV, like be excessively promiscuous or be involved with people the likes of whom they don't think they would encounter in their everyday world.”

Brown said, “I take seven pills daily that make me sick to my stomach. I experience nausea, diarrhea, vomiting and the worst of all mood swings. But yet it is still not the worst part of having HIV. It is the stigma.”