The first HIV cases were reported in the United States 40 years ago. Decades later, the more than 1 million people with HIV in the United States are contending with the coronavirus pandemic — which has not only laid bare preexisting inequities, but has also undermined recent progress to provide access to HIV/AIDS medicines and treatments, as well as reproductive health and services. For HIV-positive Black girls and women, particularly those who are immigrants, the setbacks are significant.
According to 2019 estimates from the Centers for Disease Control and Prevention, Black Americans, who make up 13.4 percent of the total population, accounted for 40 percent of diagnosed and undiagnosed HIV infections in the United States (the rate of infection for Black men was four times that of Black women). The racial disparities are bleak: Black women were 14.5 times as likely to die from HIV infection as White women.
As a professor of Black studies and American studies who has spent eight years interviewing women who are living with HIV, I have witnessed the ways mainstream narratives often pathologize Black women’s sexuality and their bodies. I focus on Black girls and women because there are few effective HIV interventions and research that are exclusively tailored to the unique racial, gender and reproductive dynamics of their lives. Stereotypes, coupled with their deprioritization in health care and medical contexts, are why I focus specifically on their lived experiences.
Through my research, it’s been clear that Black women who are living with HIV/AIDS and navigating the pandemic shoulder multiple burdens: psychosocial strains, the stress of isolation, stigma and the trauma of overlapping inequalities of food insecurity, financial hardships, unemployment and inadequate access to quality care. The labor of managing a preexisting condition and preventive measures such as social distancing, screening and contact tracing while maintaining social and mental well-being often require resources that are inaccessible to many HIV-positive Black women, especially immigrant women.
Take one woman I’m interviewing for my research, an HIV-positive Black immigrant woman from the Caribbean who now lives in Brooklyn. She recently told me that she feels like “no one cares about HIV and our lives.”
With the spread of covid-19 and the pandemic-related restrictions that resulted in limited access to health care and treatment, she struggled to access psychosocial support, antiretroviral refills and immigration services. She worried about what a preexisting HIV diagnosis would mean for her risk of coronavirus infection, as well as the double stigma that may arise if she also tested positive for the coronavirus, she said.
Ultimately, Black immigrant women continue to live, work and manage life in illness and inequality at the confluence of covid-19, HIV/AIDS and mass deportation. Even as they are increasingly impacted by HIV on a global scale, they remain overlooked in research agendas and public health interventions. That’s why the urgent needs of Black girls and women must be addressed with culturally specific interventions that consider their holistic lives and political interests.
The woman I’ve been interviewing, for example, struggles to make ends meet while taking care of the sick and elderly as a home health-care worker, one of the many service sector positions where immigrants are overrepresented. As a nurse aid working closely with clients, she is cautious of the need to protect herself from possible infection. A positive covid-19 status might be lethal, given her underlying condition. One study found that people living in New York with an HIV diagnosis were more likely to receive a diagnosis of, be hospitalized with and die in-hospital with covid-19 compared with those not living with an HIV diagnosis.
In New York, the median annual earnings for those working in the field in is $22,000. An industry made up predominantly of people of color, workers in personal care and health-care support are notoriously underpaid and undervalued.
At the height of the pandemic, an estimated 50 percent of New York’s undocumented immigrants had lost their jobs. On top of that, an already vulnerable population had virtually no access to federal food stamps, rent subsidies, cash assistance, unemployment insurance or stimulus checks.
Further complicating these overlapping struggles, immigration status is a factor that magnifies the obstacles faced by HIV-positive women. Even as the health-care sector and many essential jobs rely on immigrant labor, the growing polarization around immigration creates a hostile environment.
Anti-immigration attacks and national responses to HIV/AIDS have long intersected. In 1982, the Centers for Disease Control and Prevention notoriously classified Haitians as an AIDS “risk group.” Five years later, in 1987, an HIV ban, overwhelmingly passed by Congress, prohibited HIV-positive people from obtaining U.S. tourist visas or permanent residence status unless they obtained a special waiver. These early government responses to HIV/AIDS highlight the ongoing policy ramification of historical narratives that have pathologized Black Caribbean immigrants.
Now, as Customs and Border Protection officials are allowed to use covid-19 as a pretext to expel undocumented migrants at the border, it’s all the more urgent to address the structural conditions that drive gendered and racial health inequities. Such exclusionary policies interact with pandemic-related stigma to shift blame and liability to marginalized communities.
The experiences of women I’ve interviewed offer us two lessons that can inform how we meet the unique needs of girls and women surviving through HIV/AIDS and covid-19. First, we can develop more holistic approaches to care and treatment: approaches that prioritize young women’s psychosocial health through the sustained investments of support programs for and led by HIV-positive Black women such as SisterLove in Atlanta and EVE for Life in Kingston, Jamaica.
Second, health professionals can collaborate with reproductive justice advocates to improve coordination and dialogue among medical institutions and community-based programs to provide more humane and integrated services that support Black women’s access to the resources they need to care for themselves and their families long-term. These efforts must directly address structural inequality and racialized sexism. Health-care professionals at all levels must embrace HIV-positive women as agents of their own lives.
When it comes down to it, we know remarkably little about how everyday Black women live with HIV, despite the fact that it can be socially stigmatizing, physically deteriorating, emotionally debilitating and potentially lethal. What we do know is that HIV does not merely impact bodies, but rather whole lives. My interviews with HIV-positive women serve as potent reminders that to advocate for them, we must prioritize holistic, culturally sensitive approaches that appropriately address their unique needs.
We must honor the lives Black women lead.