Willful and Deadly Negligence: Women, HIV, and Activism

Across New York City, AIDS activist group ACT UP/NY unleashed a powerful billboard campaign. “Women don’t get AIDS,” the signs read, “they just die from it.” In the late 1980s, poor women of color were the fastest growing group of people with HIV/AIDS. These women did not have regular access to health care, and when they did go to clinics, their doctors misdiagnosed HIV as other infections. Operating under the Center for Disease Control’s definition of the virus, doctors did not always recognize that HIV manifested differently in women than in men. In fact, women with AIDS died more quickly than men. Women often suffered from serious gynecological infections, such as cervical cancer or pelvic inflammatory disease, which became deadly more quickly than the infections often seen in men. These infections were not included in the CDC’s basic definition of the disease, nor were they studied by the agency. This oversight had life-threatening implications for women with HIV. They were not eligible to participate in clinical drug trials or receive social security disability benefits. In response, these historically invisible women became their own advocates. By the middle of the 1990s, women had successfully lobbied to change the CDC’s definition of HIV, challenged the exclusion of women from research, and sued the federal government for withholding benefits. This activism, which women situated within a larger historical context of a sexist medical industry, changed the treatment and available resources for HIV-positive women.