These grim statistics underscore the significance of National Black HIV/AIDS Awareness Day. It grew out of a collaboration among Black advocacy groups to stop the spread of HIV in their communities. At the time that National Black HIV/AIDS Awareness Day was first recognized, in 2001, the nature of HIV infection in the United States was shifting. African Americans made up a growing number of those newly diagnosed with the virus, as well as those dying of the disease. At the same time, new antiretroviral medications to treat HIV had become available, promising to make HIV a chronic, manageable illness. For some communities, it worked.
But those treatments were expensive and, as activists predicted, access to them among Black communities was likely to be low. Scientific progress met American racial disparities and exacerbated inequality. This history shows us that biomedical interventions such as antiretrovirals to treat HIV or the vaccine against the coronavirus yield some progress in the fight against epidemic disease, but do little to alter the underlying inequities that make some communities more vulnerable to illness in the first place.
Since AIDS was first identified by doctors in 1981, African American AIDS activists have been key players in the fight against the illness. Like many of their White counterparts, African American AIDS activists promoted HIV testing and taught others to stop transmission of the virus through condoms and clean needles. But they also addressed AIDS in the larger context in which people found or put themselves at risk for HIV. In this way, their activism was rooted in a vision of health justice — one that aimed not just to stop HIV, but to combat the social ills and inequities surrounding it as well.
One of the country’s first Black AIDS service organizations was founded in Philadelphia in 1985 by Rashidah Abdul-Khabeer, an infectious-disease nurse, and Wesley Anderson, a public health worker who had experience tracking sexually transmitted infections. Blacks Educating Blacks About Sexual Health Issues (BEBASHI) focused particularly on fighting HIV/AIDS among poor and working-class Black women, whose lives were destabilized by deindustrialization, the contracting welfare state and the militarized policing of their communities.
The group sent staff and volunteers to street corners and public housing projects in Philadelphia’s predominantly Black neighborhoods, where they knew they would find women whose reliance on male partners put them at risk for HIV through physical and sexual violence. In the late 1980s, BEBASHI also produced educational films that illustrated, in dramatic fashion, the links between intimate partner violence and the growing epidemic. As scholar J.T. Roane has observed, in telling these stories, the films framed poor Black women’s HIV risk “within a wider terrain of violence and economic and social isolation.”
African American AIDS activists also focused attention on the ways that racialized mass incarceration both fueled the spread of HIV and prevented people with the virus from receiving the care they need. Katrina Haslip was one such activist. She grew up in a family of 11 children in Niagara Falls, N.Y.; as an adult, she started injecting drugs and supported herself with sex work. While doing time on a pickpocketing charge at Bedford Hills Correctional Facility in New York, she tested positive for HIV and saw women “dying in their cells and in the hospitals,” with little information about the disease that was killing them.
In 1988 she became an early leader in Bedford Hills’s AIDS Counseling and Education (ACE) program, through which women in the facility organized to educate one another about AIDS. After her release Haslip worked on ACE-OUT, a similar program for HIV-positive women leaving prison, and agitated for the Centers for Disease Control and Prevention to change the case definition of AIDS, which had been based on the ways that the disease presented in men, and thus inadvertently prevented many women with AIDS from being diagnosed properly. Haslip herself passed away in 1992, just a few months before the change took effect.
Greg Smith, a Black gay man with AIDS who was incarcerated in New Jersey from 1987 until his death in 2003, also gave voice to those living with the disease behind bars. Smith was serving a five-year burglary sentence when, in 1989, he was accused of biting a guard on the hand with the intent to transmit HIV. Even though the virus is not transmitted through saliva, Smith was convicted of attempted murder and sentenced to 25 years in prison. He wrote about the plight of HIV-positive prisoners, including his own struggles to secure sufficient medical care.
This work galvanized activists on the outside to repeal laws that criminalize HIV transmission and advocate for the humane treatment of prisoners with AIDS. Some of those same activists, including Waheedah Shabazz-El, a Black Muslim woman and founding member of Positive Women’s Network-USA, were also instrumental in securing a deal in 2008 to make condoms available in Philadelphia prisons.
African American AIDS activists also have worked tirelessly with and on behalf of their counterparts globally, particularly in the African countries hardest hit by the epidemic. In South Africa, for example, the HIV prevalence rate rose from less than 1 percent in 1990 to a staggering 22.4 percent by the end of the decade. During the late 1990s and early 2000s, when antiretrovirals made HIV into a manageable illness for those who could afford them while the number of cases in sub-Saharan Africa skyrocketed, activists working with the Health Global Access Project (GAP) Coalition turned out hundreds of Black protesters in demonstration after demonstration to demand “AIDS Drugs for Africa.”
Throughout the campaign, they connected their own struggles to those of people halfway around the world, with signs that called to “Stop Medical Apartheid from South Africa to Philadelphia” and from “Botswana to the Bronx.” In 1999, they succeeded in pressuring President Bill Clinton to walk back trade policies that favored the pharmaceutical industry and prevented poorer countries from producing or acquiring inexpensive generic versions of drugs to treat HIV and AIDS. Several years later, when President George W. Bush announced billions of dollars in new funding to fight AIDS in Africa, those same activists rejoiced.
The past decade has given us a handful of popular narratives of AIDS activism from years past, such as the HBO film “The Normal Heart” and David France’s documentary “How to Survive a Plague.” However, these tell the stories of groups that largely consisted of White gay men and focused on biomedical solutions to the epidemic or, as they put it, on getting “drugs into bodies now.” That work was critical, but it does not comprise the whole story of AIDS activism in the United States — far from it.
Recognizing the contributions of African American activists to the struggle against HIV/AIDS is not just about telling a more diverse, or more complete story. It’s also about grappling with the ways that epidemic disease plays on and reinforces existing inequities.
Indeed, the problems that Black AIDS activists fought against have corollaries in the coronavirus pandemic. Lockdowns to prevent the spread of the virus also have isolated victims of intimate partner violence with their abusers, leading to surges in calls to crisis hotlines and advocacy groups. Covid-19 has spread rapidly through prisons and jails, which have been the site of 4 in 5 clustered outbreaks in the United States. Early data on vaccine distribution in the United States suggests that Black and Hispanic communities are being left behind, and the overwhelming majority of people in poor countries are unlikely to be vaccinated this year. Meanwhile, South African leaders are among those pushing the World Trade Organization to make vaccines more widely available by relaxing the very same intellectual property rules that stymied their access to essential AIDS drugs over 20 years ago.
Similar to HIV/AIDS before it, the coronavirus has exposed cracks in our society — the harsh inequities that leave too many of us vulnerable, and the places where our social safety net has not just become threadbare but has been deliberately unraveled. Amid a new pandemic, we can look to the work of African American AIDS activists for ways to think about health not just as a matter of viruses and vaccines, but as a question of what makes us — all of us, together — truly well.