Advocates Call for Reframing the Language Around Black Women and HIV

Since the beginning of the HIV epidemic in the early 1980s, Black women have been heavily affected — making up over half of new diagnoses among U.S. women today. With that, they’ve been equally impacted by stigmas that exist around the virus. 

Now they’re speaking up about it. 

Black cisgender and trans women are launching new initiatives to reframe the narrative on prevention and care. 

“Black women who are living with HIV are not often seen or heard, and this silence really fuels a lot of stigma,” Amelia Korangy, the senior external affairs officer at ViiV Healthcare, tells Word In Black. “It also keeps women from really understanding how HIV can impact their lives and their families and our communities.”

On April 27, ViiV Healthcare, a pharmaceutical company focused on therapies for HIV, released a report aimed at radically transforming how HIV is spoken about and how Black women living with — and without — the virus are cared for. 

In the U.S., Black women account for nearly 60% of new diagnoses among cisgender women, despite making up less than 15% of the female population. Trans Black women account for 46% of new diagnoses among transgender women.

“From Risks to Reasons: A Guide for Communicating and Connecting with Black Women about HIV” invites healthcare professionals, HIV service providers, media professionals, and friends and family to consider “whole person health” when talking about the virus. 

This means retiring the language around “risk ”— which can cause people to disconnect rather than act on their potential prevention needs — and instead speak about the “reasons” why a Black woman may want to practice prevention methods or why she may have come in contact with the virus. 

“For Black women, the greatest ‘risk’ for HIV may be poverty, homelessness, where you live, intimate partner violence or other social determinants — which are rarely captured in the campaign messages, questionnaires or intake materials used to identify who should be counseled on or connected to preventive HIV care,” the report reads. “To disrupt the disproportionate impact of HIV among Black women, new approaches are needed that empower women to protect their health and reflect the diverse and complex experiences of Black women.”

“From Risks to Reasons” was created with the support of the Black Women’s Working Group to Reframe Risk, a collective of Black women advocates, communication experts, and researchers established by ViiV Healthcare.

Tori Cooper, director of community engagement for the Transgender Justice Intitiative at Human Rights Campaign and a member of Black Women’s Working Group, says support systems are responsible for building others up. And for Black women living with HIV, it’s important for their loved ones to embrace inclusive, affirming language about the virus.

“Whatever that support system is, it is so important to self-esteem. It is so important to safety. It is so important to success…And it’s so important to simply self,” Cooper says.

“We have to make sure we’re getting that messaging to folks who are in your circle because they’re going to help you understand the importance of you,” she adds. 

The report encourages a new framework for communicating to and about Black women who are living with HIV, and it also explores prevention — a form of self-care Cooper says Black women must prioritize and “own.”

“As Black women, it’s important that we stress to other Black women the need for prevention and understanding what prevention is — understanding that HIV prevention doesn’t mean that you don’t trust your sexual partner or parners,” Cooper says. “What it simply means is prioritizing yourself and your own sexual health over that of other people and not leaving it simply in someone else’s hands. Which, again, is a part of self-care.”

The initiative features a $5 million commitment in community grants from ViiV Healthcare to “really change the narrative around HIV and Black women to a place that’s more empowering and talks about reasons for HIV prevention and care instead,” Korangy shares.

Community-based organizations and nonprofits are eligible to apply.

“We’ll work with a group of community advocates,” Korangy says. “So, Black women in community will make decisions about where those resources go. And we will be excited to connect those grantees into our network of other organizations that are doing different kinds of work for Black cis and trans women.”