What HIV/AIDS Teaches Us About COVID-19
By Jallicia A. Jolly
COVID-19 is a killer, in specifically inequitable ways. In New York City, the epicenter of the outbreak in the U.S, the virus continues to impact people of color in the poorest neighborhoods. While Latinos make up 29.1 percent of the city’s population, they represent 34 percent of COVID-19 deaths. Similarly, African Americans constitute only a 22 percent share of the city’s population but 28 percent of COVID-19 deaths. These racially disparate deaths mirror national trends.
In a recent statement, Dr. Anthony Fauci, the nation’s top infectious disease expert, drew on the lessons of the HIV/AIDS pandemic to inform our understanding of current coronavirus pandemic. Citing the disproportionate coronavirus death toll among Black Americans, Dr. Fauci notes that similar racial disparities shaped the AIDS pandemic. While Fauci does not talk about the conditions of disparate vulnerability that have shaped the health of communities of color, he also notes the importance of the activism of marginalized groups in addressing HIV/AIDS.
Inequality as a Pre-existing Condition
In the HIV/AIDS pandemic, we devalued lives of color and focused on means of transmissions that left out people of color. For example, funding for resources and interventions were not accessible in communities of color in early responses to the pandemic. Additionally, stereotypes of HIV/AIDS as the consequence of the deviant behavior of Black and Latinx people often perpetuated shame while shifting attention away from the specific contexts that shaped people’s sexual practices and relationships. Furthermore, HIV testing and outreach that focused exclusively on individual transmission ignored both the structural conditions that determined risk and the intersecting inequalities that impacted the rapid transmission and treatment disparities for marginalized groups. The concentration of poverty in communities of color, poor access to affordable housing, and the lack of health care coverage coupled with distrust of the medical establishment have facilitated the transmission and acquisition of HIV among people of color who were often tested for HIV less frequently and at later stages of their HIV infection.
Political Advocacy
HIV/AIDS advocacy also highlights the power of community mobilization in countering government inaction and medical neglect. In the absence of government action and interventions in the early HIV/AIDS epidemic, activists and organizers took to the streets to protest, lobbied for scientific research that could inform treatment, and galvanized for direct action, including state and federal funding and educational programs. Black researchers, activists, and political leaders worked collectively to mobilize the public health system in the face of institutional racism and sexism in the medical and social services establishment as well as the exclusion of their needs and interests in many predominately white activist groups. For example, Katrina Haslip, an HIV-positive, formerly incarcerated Black Muslim woman, raised awareness about how women were uniquely affected by HIV/AIDS by developing tailored care strategies for inmates in Bedford Hills Correctional Facility while mobilizing a multi-racial group of HIV/AIDS activists outside of prison. These efforts to counter medical neglect and the criminalization of women of color pressured the CDC to broaden its surveillance definition of AIDS to include conditions faced by women in 1992. This expansion of AIDS surveillance enabled women to access disability benefits and social protections determined by the Social Security Administration.
Alongside the leadership of incarcerated women, the strategic organizing of Black gay men challenged government inaction around AIDS in Black communities. Groups such as “Majority Action Committee,” which was led by gay men of color within ACT UP, a predominately white HIV activist group, amplified the voices of people of color by directly protesting the racism members experienced in the medical and social service establishment and connecting AIDS to long-standing manifestations of inequality in the U.S. While the economic, cultural and political clout of white gay men placed HIV/AIDS on the list of domestic policy concerns, as Celeste Watkins-Hayes notes, it was the labor and care of people of color who cultivated and sustained the communal structures to save their own lives.
Communal Support
While the HIV/AIDS epidemic and COVID-19 pandemic in the U.S. share differences in their modes of transmission and government responses to their initial outbreaks, they both exemplify how activists respond by creating their own support systems. For example, a grassroots network of women and gay men cared for the sick and dying amidst the absence of a universally accepted treatment for AIDS and the discrimination they faced in the social welfare and medical systems. In particular, women remained critical aspects of the community care initiatives, and lesbians organized blood drives when gay men were prohibited from donating blood. These support structures also included the community initiatives of the Women’s Program of the AIDS Health Project (AHP) of the University of California at San Francisco and the Gay Men’s Health Crisis (GMHC). Given the exclusion of women of color from resources and services, the AHP had a multi-racial focus and provided ongoing direct economic, social, medical, and services including a weekly daytime women’s drop-in group and developed educational materials. Additionally, the 24-hour AIDS hotline of the GMHC connected people to information about the disease and support services such as professional counseling, help navigating the social welfare, and a “buddy system” that supported infected people through their daily lives.
Collectively, HIV/AIDS activists foregrounded community care and patient advocacy within medical research while using rage as a tool to mount political and public pressure and to funnel revenues into public health interventions, social services, and community-based organizations.
We see similar care structures unfold in responses to COVID-19, as community organizations and leaders address the lack of economic and social welfare structures with resources to meet the basic needs of marginalized people. These include mutual aid collectives that have helped provide groceries, medications, childcare and plumbing or electrical services as well as in the community care groups that serve the homeless, disabled, and marginalized exchange food, rides, and crucial services. These support systems have also accompanied political and legal advocacy and holistic community care services. For example, Sueños Sin Fronteras’ health advocate program includes an umbrella of services that support for immigrant, undocumented, asylum-seeking womxn and their families at different phases of their legal proceeding. These services provide harm reduction and resources while in detention and post-detention including offering clothing, cash assistance, hygiene materials, housing assistance, transportation, and money for health care costs. Additionally, National Bail Out’s #FreeBlackMamas campaign addresses the elevated risks related to COVID-19 faced by Black women by bailing out Black mothers and caregivers out of jail and providing weeks of groceries, assistance with rent, and holistic support services.
To address COVID-19, it is crucial to learn directly from the strategies of HIV/AIDS activists who illuminated health disparities, amassed political will, and demanded government action. Community care and mobilization remain critical survival strategies in the face of health inequality and state neglect. It is these legacies of activism that teach us how to survive in intense and hostile conditions. It is these communal networks that teach us new ways of living and of being in times of pain and possibility.
Dr. Jallicia A. Jolly is a writer, postdoctoral fellow, and incoming Assistant Professor in American Studies and Black Studies at Amherst College. Her research focuses on Black women’s health and organizing, racialized health disparities, and reproductive justice in the Caribbean and the United States. A recent Ph.D. in American Culture from the University of Michigan, Dr. Jolly is invested in applying her community-based research to culturally-relevant interventions and social action. She has written on race, gender, and inequality for The Huffington Post, Ms. Magazine, Rewire News, Black Youth Project, & ForHarriet
