Where are the voices of Black women and girls in HIV awareness?

Over the last three decades, there have been tremendous strides in HIV research, prevention and treatment options, yet Black women are still dying at alarming rates from HIV/AIDS complications—we’re 15.3 times as likely to die from HIV infection as white women, in fact.

As another National Women and Girls HIV Awareness Day came and went without much fanfare or attention, this should serve as a loud-and-clear wakeup call.

There is only one thing that increases a woman’s vulnerability to sexually acquired HIV: Sex. Good sex, bad sex, sex with a beloved or sex with a one-night stand. Despite the long-held public assumption that HIV is a gay man’s disease, HIV does not care if we are gay or straight, cisgender or transgender.

However, the health system, public opinion, and funding allocation do.

When resources are primarily allocated to those assigned male at birth, cisgender women are systematically left out of the equation. Within the last few years, there has been an effort to include Black women and girls’ voices within the HIV advocacy movement to reframe the narrative about HIV and to bring attention to the impact that HIV has on this community. And yet Black women’s health has been historically under-prioritized, as evidenced by the disproportionate impact of HIV experienced by Black women.

HIV prevention must prioritize Black women. Despite making up less than 15% of the female population, Black women account for nearly 60% of new HIV infections in United States women. Black women are vulnerable to HIV and sexually transmitted infections (STI) due to increased exposure to trauma and structural violence. Black women are also less likely to receive HIV/STI screening, treatment, and HIV prevention services. By focusing on prevention (screening, treatment referral, vaccination, and pre-exposure prophylaxis (PrEP), we can reduce new HIV infections among Black women.

Increasing acceptance, access, and support for PrEP adherence is critical in reducing HIV among Black women. PrEP is a medicine used to protect against HIV infection. Like birth control, PrEP can be taken in pill form or as a bi-monthly injection. Affordable and low-key, PrEP is 99% effective at preventing sexually transmitted HIV when taken as directed. PrEP may be an effective option for Black women as it requires no partner negotiation and increases empowerment. Black women experience barriers to PrEP at various levels (clinician, individual, and structural). Clinician-level factors such as HIV/STI screening, discrimination, not prescribing PrEP, and discomfort communicating with patients about PrEP. Individual-level factors such as self-perception of risk vs actual risk of HIV, fear of PrEP side effects, lacking PrEP awareness, and medical mistrust. Structural factors include reduced care access and PrEP-associated costs.

Innovative and sustainable ways to foster PrEP initiation and retention among Black women are a public health priority and must continue to be prioritized.

Supporting Black women to prevent HIV is crucial, and community-driven strategies are the key. Leaning on community-empowered health promotion strategies, successful with other minoritized populations, will reduce transmission of HIV among Black women. Community-empowered strategies are designed and led by the people they aim to serve so that participation is more likely. Community empowerment would help to empower, educate, and position Black women to amplify their voices in health care. HIV-related stigma and mistrust in healthcare caused by racism must be tackled by empowering communities.

Community empowerment must go beyond imposing health programs and instead become a movement where people within and outside of the community are united in a fight for health, with a shared goal to overcome barriers and improve access to healthcare that is culturally-safe.

Empowerment is multi-faceted and can be fostered from inside or outside the community by researchers, community organizers, or external support. Our research team at the University of Illinois Chicago, led primarily by Black women, is developing a community-empowered PrEP program that centers the voices of Black women. This PrEP program aims to be responsive to barriers by developing an infrastructure of support with and for Black women and a sisterhood of prevention and protection.

We are aiming for a society that includes Black women and girls in discussions and programming surrounding HIV because they deserve to thrive. When we prioritize the health of Black women and girls, we can achieve what should be a simple but powerful goal: to lower vulnerability to HIV by addressing individual and structural barriers, all while building up resources and support networks.