But, it is not just their experiences that should inform our response today. Women who have been medical (and political) subjects of HIV/AIDS also have much to teach us during our current pandemic. Historically, women have been at the forefront of fighting to keep communities and families healthy. This is particularly true for the HIV/AIDS epidemic, where pregnant women were among the first people living with HIV/AIDS who took drug regimens to prevent the spread of the virus. Women also insisted that medical care, and state assistance, needed be delivered consistently to men and women.
Re-centering our history of HIV/AIDS is crucial to understanding the disease — and how we will hopefully end the epidemic. Just as importantly, women living with HIV/AIDS have initiated public health efforts to promote care and treatment for all people living with the virus, providing road maps to making a healthier society where pandemics are addressed as they emerge.
Despite women’s long-standing work, white gay men dominate our historical memory of HIV/AIDS. Perhaps this is because they were some of the most vociferous protesters in ACT UP, as gay men, from the late 1980s to the mid-1990s, demanded the government develop treatment, and negotiated with Dr. Fauci in his post as the Director of the National Institute of Allergy and Infectious Diseases. But black women and Latinas (and women who are Afro-Latina and/or of Caribbean origins) have also been part of this history since the official start of epidemic in 1981. They were among the first people infected with HIV and to die from AIDS.
Historically and today, Black women have been disproportionately affected by HIV/AIDS. This is because HIV/AIDS never followed lines of identity (gay men, intravenous drug users) and instead was, and continues to be, fueled by structural violence and inequality. Black and indigenous women and Latinas were at particular risk for becoming infected with HIV because they lacked consistent access to health care and were more likely to experience the state’s refusal to provide resources — notably affordable housing — needed to sustain their health. They were disproportionately targeted, along with Black men and Latinos, by the U.S. government’s War on Drugs and experienced incarceration at rates far higher than white people — an example of how structural violence shapes health.
In 1990, almost 10 years into the epidemic, pregnant women living with HIV in Newark, the majority of whom were black, began taking part in the controversial the Pediatric AIDS Clinical Trial Group (ACTG) 076 trial. Doctors gave them AZT, one of the first drugs used to treat AIDS, with the express purpose of testing the possibility of stopping transmission between themselves and their fetuses. Many women participated in the study to protect and save their children, even as they risked their own lives and well-being. Many white women activists raised questions about the ethics of the trial and suggested that members of ACT UP no longer negotiate with Fauci and the institute he led until they treated women as deserving of care rather than vectors for disease. In the end, however, the study was halted at the end of 1993 because the regimen proved so effective that it was no longer ethical to give one group of pregnant women living with HIV a placebo instead of the treatment.
HIV-positive women also led the fight against AIDS by organizing to expand the definition of who had the disease. As of 1990, the only way a person could move from being classified as HIV-positive to being diagnosed with AIDS, was to develop a set of conditions that appeared in men’s bodies as their immune systems deteriorated from the virus. This had major ramifications for health care as women were frequently denied coverage because the ways their immune systems manifested the disease did not align with what men experienced. So women mobilized to fight for change. At protests in Washington, D.C., women living with HIV/AIDS carried signs that read: “Women Don’t Get AIDS, They Just Die From It.”
As the documentary “Nothing Without Us: The Women Who Will End AIDS” by Harriet Hirshorn shows, women members of ACT UP like Katrina Haslip and Iris de la Cruz, two women with HIV, organized the campaigns, and the lawyer, Terry McGovern, represented them through the HIV Law Project. They sued the government to expand diagnostics so that more people could be diagnosed with AIDS and could receive access to care, including treatment, housing and other state benefits previously provided almost exclusively to men diagnosed with AIDS.
It worked. In 1993, the American government finally acceded to the women’s demands that diseases such as cervical cancer and pelvic inflammatory disease be included in the definition of AIDS. This ensured that women living with HIV/AIDS received health coverage through their Social Security disability benefits.
Thanks to this work in 2020, women are among the community of long-term survivors in the United States. This is because they insisted that women deserved treatment for AIDS, even as they simultaneously pointed out that medicine alone would never be sufficient to end the epidemic.
More than a few of 40 women I’ve interviewed over five years in three different cities for a living women’s history of HIV project have told me, “HIV saved my life.” While the explanations vary — some women associate getting and staying clean from drugs with being diagnosed with HIV; others point to the medical care and services they receive, particularly housing that as poor people they were able to access through supportive housing programs for people living with HIV/AIDS — they describe a set of conditions that could have killed them regardless of HIV. According to one woman, “If I was still out there using I would probably be dead now, so the HIV really saved my life...I’m a much better person now, stronger, confident, just, you know, ready to help whoever I can.”
These stories remind us that health is more than the absence of a virus or disease. These women have built community, and, in the process, have learned to thrive and survive. They have found other women living with HIV, and resisted the impulse to isolate themselves. They have insisted to their families and their communities that their care matters, not just for themselves as patients, but in terms of detailing necessary social conditions for communities to flourish.
As the country faces the covid-19 pandemic, these are the lessons and perspectives we should consider. Let’s study why women have a lower rate of death from coronavirus than men, and investigate all the possibilities from the biological to the structural, namely how access to health insurance, paid sick days, secure housing and consistent child care help people survive. This is the best way to determine how gender matters to the emergence and evolution of pandemics as well as the fight to make individuals and communities healthy.