History can provide us with guideposts to better health, but only if we look beyond superficial explanations. In the case of AIDS — and likely ultimately for covid-19 as well — survival can depend on political mobilization and demands by patients to receive more than biomedical solutions to disease.
This was particularly the case for women living with HIV/AIDS, and a new archive provides a set of reflections on how women, the majority of whom are Black and brown, have survived with HIV for decades. Among the 39 women featured in “I’m Still Surviving,” is Marta Santiago, a straight Latina who grew up on Chicago’s west side in the 1960s and 1970s. Santiago remembers saying to herself in the early 1980s that she and her newborn son had nothing to worry about when it came to gay-related immunodeficiency (GRID, the initial name given to AIDS). What she didn’t know, as she reassured herself, was that both she and her not yet born son were already infected with HIV in 1980.
Santiago’s neighborhood in the 1970s held few options for her. Facing a combination of mounting racial segregation and systemic racism in Richard J. Daley’s Chicago, and intensifying economic inequality fueled by national stagflation, Santiago found herself without a high school degree and needing to flee an abusive marriage. She sought employment where she could: garment factories where women received low wages and faced consistent sexual harassment. In an attempt to find respite from these circumstances, Santiago found people and places that made her feel free but also introduced her to new harm, specifically sex work and heroin. By 1979, Santiago married her second husband. They had a son together in 1981 and divorced by 1984.
Five years later, Marta had tested positive for HIV along with her son and gotten clean and sober. Reflecting on her past today, Santiago is the first to acknowledge that any one of her actions, including her marriage, in the late 1970s could have been the source of her HIV infection. But when she was first diagnosed in 1989, Santiago was much more likely to be accused of being a vector for HIV/AIDS than she was to find care and treatment as a woman living with the virus.
All the more striking, then, was the group of women living with HIV Santiago met in the basement of Cook County Hospital. All the women, the majority of whom were Black, were patients at the newly created Women and Children with AIDS Program, run by Marge Cohen and Mildred Williamson, among the first providers in the city of Chicago to treat women. The women — patients and providers alike — made clear that AIDS was not only a White gay male disease. More importantly, they demonstrated that efficacious care for women living with HIV required addressing the social and economic inequality that has long plagued women of color.
Both Santiago and her son are alive today because of the care she secured for them at the Women and Children with AIDS Program. There she received excellent medical treatment that recognized how illness manifested in her body. For her, and all the women at the clinic, this required consistent attention to gynecological health as well as access to mental health services.
At the same time, Santiago persisted in making the case, along with her health-care providers, that health and well-being required much more than the absence of disease. For Santiago to be healthy, she needed access to quality child care for her children, employment opportunities that provided her a living wage and encouragement to build communities of care with other women living with HIV. Dozens of the women first treated at the clinic are alive today and listening to their experiences can help us comprehend what is needed for long-term survival.
Looking to a future where the transmission of HIV is fully curtailed through a range of biomedical solutions, including PreP (pre-exposure prophylaxis), access to affordable pharmaceutical treatments and vaccines for HIV, remembering how women have survived by expanding the definition of care and treatment for HIV to include ending gender-based violence and inequality will remain important. Their activism transformed how doctors and the U.S. government determined a diagnosis of AIDS in the early 1990s. This advocacy also changed AIDS education. In places such as the Bedford Hills Correctional Facility in New York, for example, incarcerated women developed a popular education curriculum based on peer education to prevent the spread of HIV, while also helping newly freed women living with HIV safely and healthfully reenter their communities of origin.
Even the decisions to use drugs or have sex in certain ways — long seen as epitomizing choices for which individuals bore responsibility — are constrained by their economic and political circumstances, including having little to no access to gainful employment, or facing pervasive gender-based violence. Only then will we be able to understand the extent to which structural racism and inequality rather than individual choice are the true root causes of global pandemics — and begin to heal from them.