HIV/AIDS-infected women not only bore the effects of the disease itself but also lived with stigma. They were deemed socially unacceptable, and like their gay male counterparts, they were told that they brought the disease upon themselves. They were often ostracized by family, friends, and their communities. “It was like living with a scarlet letter on your chest,” said a woman who did not fit any of the risk profiles when she was diagnosed. “I didn’t try to get any treatment after I found out, because I didn’t want to deal with all that goes with it.”
This patient was referring in part to the question that many women living with HIV/AIDS dread and fear: “How did this happen to you?” It is a question that kept—and continues to keep—women from telling even their closest friends and family that they have HIV/AIDS. Women who were diagnosed in the 1980s talk about feeling isolated and being the only woman in a sea of gay men at clinics trying to get care. “There is so much that goes into anybody admitting that they have HIV/AIDS,” says one woman who was diagnosed in 1988, “but in being a woman, there is so much judgment of you and who you are.” She says that the way people have treated her, even in health care settings, kept her out of care for the first 10 years. “Things have gotten better, at least with the doctors and clinics, but I am still very careful who I tell in my personal life.”
Need for Federal Intervention
After the emergence of AIDS, time soon showed that all women may be at risk and that HIV disease strikes throughout society. Like diseases from malaria to diabetes, however, HIV/AIDS affects women living in poverty, especially minority women, at highly disproportionate rates. Most women living with HIV/AIDS, past and present, were living in poverty at the time of their infection or were forced into poverty because they lost their jobs or were too sick to work.10,11
As the AIDS epidemic grew, communities were woefully underresourced to respond to the economic, social, and clinical needs of women. In today’s comparatively resource-rich environment, it is almost impossible to imagine the severe limitations of clinical knowledge, the critical shortage of support services providers of any kind and, ultimately, the absence of hope that was so endemic to this new disease.
Ryan White HIV/AIDS Program providers often assist patients in required paperwork to ensure receipt of- and coverage for- services. This assists in breaking down barriers that may keep many women accessing care.
Compounding the challenges facing women in the early days of HIV was the fact that the first AIDS service organizations and community-based organizations addressing HIV/AIDS were born in large part from the gay rights movement. They knew little of the needs of women and lacked the skills and resources with which to serve them. In addition, because the manifestations of HIV disease are different in women and men, the experience that clinicians were gaining among men was not always applicable to their female patients.
“We seldom saw the Karposi’s sarcoma that we saw in gay men who came in. Instead, we were seeing cervical cancers and other things that showed us that the progression was different in women,” says Diana Travieso-Palow, formerly with the Department of Obstetrics and Gynecology at the University of Miami School of Medicine, and currently with the Health Resources and Services Administration (HRSA), HIV/AIDS Bureau. “Even with zidovudine [AZT],” Travieso-Palow adds, “most of the early studies had been done on gay men, and there was not a lot that clinicians knew about the effectiveness and long term impact of the drug on women.”