While medical advances have improved quality of life, life expectancy, and disease management for people with HIV since the beginning of the epidemic, significant disparities exist, particularly among people of color and the LGBTQ+ community. Black women continue to be diagnosed with HIV at disproportionately high rates compared to white and Latina women. 

To Black Women’s Working Group member Leisha McKinley-Beach, National HIV and AIDS Consultant, “Black women continue to be diagnosed late— 21% with a concurrent HIV and AIDS diagnosis—and are often shocked when they receive their diagnosis. As a community that has been disproportionately impacted since the start of the epidemic, a new HIV narrative is crucial to reinforce sex positivity, sexual freedom, empowerment, and autonomy.”

According to a recent study, PrEP (pre-exposure prophylaxis) uptake, which is a medicine taken by people who don’t have HIV that can substantially reduce the risk of acquiring HIV if they are exposed, has been persistently low among US women, particularly Black women, who account for 61% of new HIV diagnoses among women. In addition to perpetuating stigma, this trend is alienating Black women who don’t have access to the proper resources from seeking prevention or care.

“For decades, people have been using stigmatizing language such as ‘at risk’ or ‘engaging in risky behavior,’ leading women to falsely believe HIV prevention and care does not apply to them,” says advocate Tori Cooper, Director of Community Engagement for the Transgender Justice Initiative and Human Rights Campaign. “Perpetuating a lack of access and knowledge to HIV prevention undermines women’s control over their own bodies and health, particularly in the face of inequality, lack of stability, and unpredictable situations.”

In 2021, ViiV Healthcare set out to combat this reality by creating the Risk to Reasons report that highlights the need for new messages, new messengers, and new methods to engage Black women effectively about their reasons for HIV prevention. there needs to be a greater understanding of exactly which conversations are happening, who is leading them and how the information is being disseminated and received. 

To that end, ViiV Healthcare partnered with Black women advocates, frontline providers, communication experts and researchers to create the Black Women’s Working Group (BWWG). The BWWG is a committee of Black women living with or working in HIV to challenge existing prevention approaches and develop new recommendations for communicating and connecting with Black women about HIV. 

“We discussed and developed approaches and messages to increase Black women’s awareness, knowledge and participation in HIV prevention and care strategies,” Cooper, a member of the BWWG, explains. “Bringing together Black women working in the HIV community allowed us to better understand the circumstances, challenges and motivations that impact Black women’s awareness, and use of prevention and care strategies. As a result, we were able to listen and share among a group of Black women of different experiences to build and amplify a more empowering narrative.”

That narrative is now being formalized as ViiV Healthcare’s Risk to Reasons initiative, which goal is to not only break down the stigma surrounding HIV, thus creating spaces for information about treatment and prevention to flow; but also strengthen organizations that link women to networks of care through Positive Action for Women. 

“ViiV Healthcare- is committed to all women in the US who are or may be affected by HIV,” says Amelia Korangy, Senior Manager of External Affairs at ViiV Healthcare, adding that across the country, nearly half of the Black women living with HIV are not benefiting from the standard of care they need.

“Addressing the health disparities faced by women of color– particularly Black women– across the continuum of care is a key to closing the gap in HIV disparities in the US,” she further explains.

To maximize the reach of the Risk to Reasons initiative, ViiV Healthcare committed $5 million in funding to support community driven efforts that raise awareness about the importance of HIV prevention and care for Black women, connect women to care and train service providers to continue to change the narrative. Recently, ViiV announced these funds were awarded to 17 organizations across the nation. Over the next three years, grantees will reach more than 1 million people with reasons for HIV prevention and more than 3,500 providers positioned to better deliver HIV prevention and care to Black women.

The shift in tone of conversation is just as important as any other benefit that could come from this initiative, McKinley-Beach says. “A collaborative community support and engagement approach enables Black women impacted by HIV to be empowered to protect their health and build a foundation that enhances and encourages Black women’s engagement in their own sexual health.” 

Now is the time to recognize the urgent need for a shift in how HIV prevention is discussed and positioned with Black women. Visit the Positive Action for Women page to learn more about strengthening and informing communications and services for women living with HIV. 

This editorial is brought to you in partnership with ViiV Healthcare.