Although statistics can never reflect well enough the impact AIDS has had on women, three "facts" frame women's experience with AIDS: 1) in 1990 women represented 10 percent of all AIDS cases in the United States; 2) over 70 percent of women with AIDS in the United States are women of color, compared to 40 percent of men with AIDS; and 3) women diagnosed with AIDS have a lower survival rate than men diagnosed with AIDS. These statistics, based on AIDS cases reported to the Center for Disease Control (CDC) in 1990, are not unrelated. Access to health care directly determines survival time, and in a society structured by race, class, and gender hierarchies, health care has become a privilege, not a right. As a result, women and people of color who have less access to preventive health care or good health insurance suffer more and die faster from AIDS.
AIDS is a diagnostic category characterized by a set of specific opportunistic infections that are understood to be a response to an individual's exposure to the human immunodeficiency virus, or HIV. Although a lab can clinically test for HIV antibodies, indicating with relative certainty the presence of the virus in the body, AIDS itself is not a virus or a disease but a syndrome, a pattern of symptoms, such as a lower T-cell count or diseases such as Kaposi's sarcoma or PCP, pneumocystis carinii pneumonia. In other words, a person may contract HIV (be "HIV-positive") but may not develop infections or diseases (be "asymptomatic"). In such cases, a person is not diagnosed with AIDS. A person with HIV may live for years without developing the opportunistic diseases that translate into an AIDS diagnosis, and many people (women in particular) live with and die from HIV-related infections without ever being diagnosed with AIDS.
The history of AIDS remains hinged to its social context. Because HIV-related opportunistic infections first surfaced among gay men, the virus was initially stigmatized as a "gay disease." Although what was once called GRID (Gay-Related Immune Deficiency) was renamed AIDS (Acquired Immune Deficiency Syndrome) in 1982, the syndrome continues to carry a number of stigmas that hinder both its social control and the humane treatment of those affected by the virus. For instance, scientific research remains underfunded because bisexuals and homosexuals, the perceived targets and "victims" of the virus, are devalued socially, and the rhetoric of "risk groups" rather than risky behaviors perpetuates ignorance about transmission of HIV. Women remain peripheral to AIDS research and education (except as mothers-to-be who may expose their fetus or child to HIV). In fact, it is often difficult for women to get tested for HIV, and because many clinical trials exclude women from their research samples, HIV-positive women have less access to experimental or innovative drug treatments.
Women in the AIDS crisis have fewer resources and greater responsibilities. Women on average earn less than men and therefore have less access to expensive health care or good health insurance, and women of color have even less access to health care than white women: approximately 30 percent of Latinos in the United States reported having no health insurance compared to 12 percent for whites. HIV-positive women like Lisa Tiger, Creek/Seminole, are working to inform poor women of their special risk factors. Poor women also tend to have more dependents, as they are often the primary caretakers for children, the elderly, and the disabled. Women also consistently negotiate sexual relationships and interactions that leave them responsible for both birth control and safer sex practices. Given all these factors, women with HIV are more likely to be held responsible for contracting and transmitting the virus. CDC guidelines remain narrowly defined and women still are less likely to be diagnosed with AIDS, thus perpetuating the invisibility of women with AIDS. Finally, because women are often underdiagnosed or misdiagnosed, medical knowledge about how women's bodies respond to HIV continues to be a severely unexplored and unarticulated area of research.
Women have been at the forefront of AIDS activism, however, fighting for greater attention from scientists and health care workers. In 1986 New York's chapter of ACT UP (AIDS Coalition to Unleash Power) formed a women's caucus that initiated an informational campaign directed at doctors, drug companies, and women themselves. In 1988 they demonstrated against misinformation at the offices of Cosmopolitan magazine because an article reassured heterosexual women that they were not at risk for exposure to HIV through "normal heterosexual intercourse." Another action pressured drug companies to print warnings on yeast-infection medicines to indicate that persistent infections can point to the possible presence of HIV in women. An ongoing ACT UP campaign also targets misinformation about lesbians and AIDS, insisting that scientists study woman-to-woman transmission and that lesbians practice safer sex despite CDC assertions that lesbians remain at low risk. Finally, the recent production of AIDS documentaries as well as erotic videos by and for women provides vital information about safer sex in a world all too silent about female sexuality. With few advocates but themselves, women have organized to translate invisibility into effective political action.
The ACT UP/NY Women & AIDS Book Group , , Women, AIDS & Activism (Boston: South End Press, 1990).
Nan Alamilla Boyd
