Black women are just as essential to eliminating HIV as any other demographic, but their voices are frequently left out of the conversation. That erasure was made clear during two segments on Sept. 9 at the SYNChronicity 2020 conference (a.k.a. SYNC 2020), a large virtual meeting for health care and service providers that focused on HIV and related LGBTQ health issues.
During her presentation at “Real Talk: Black Women’s Health Institute,” Gabriella Spencer—a program associate of National Minority AIDS Council (NMAC)—noted that despite pre-exposure prophylaxis’ (PrEP) proven success in reducing HIV transmissions, women showed low engagement rates with the drug compared with gay men, and Black women in particular were four times less likely than white women to use the drug.
According to Centers for Disease Control and Prevention (CDC) figures for 2016, out of 78,360 PrEP users in the United States, only 3,678 of them were women. In July 2020, aidsmap noted that at least 28,000 women in the United States have started using PrEP. Precise numbers pertaining to Black women on PrEP are unknown, but anecdotes provided at “Real Talk” indicate that they are still low.
Using data from 2017 about Black women living with HIV in the states of Maryland and Alabama, Spencer indicated that deficits in education, employment, insurance, and Medicaid expansion were the primary reasons why barriers to PrEP existed for so many Black women.
Another factor that she focused on was marketing and awareness about the drug. The majority of available data on PrEP uptake concentrates on gay men; searches on PrEP revealed that 726 PubMed articles were dedicated to gay men, compared to 26 articles that singled out Black women.
Though PrEP is undeniably important when discussing HIV, it is only one part of preventative care. “Real Talk” pointed out that other aspects of care—general HIV advocacy and educational efforts—rarely target Black women. Those resources are usually allocated toward Black, same-gender-loving men, who face HIV transmission rates of one-in-two. But Black women are also subject to high infection rates from the virus.
According to the CDC, while women accounted for 19% of HIV diagnoses in 2018, Black women made up 58% of those seroconversions. Keep in mind that Black women were only 13% of the female population in the United States that year and that 85% of cisgender female seroconversions occurred through heterosexual sex.
A lack of HIV literacy is a major cause of these alarming numbers.
During “Real Talk,” Brandon Harrison—senior project manager at Primary Care Development Corporation—stated, “Black women need access to competent, affirming, sex-positive safer sex information that is specifically geared towards their bodies, their relationships, and their community concerns.” This reinforced the point that even as HIV literature is readily available to people who know where to find it, that information does not always reach the populations most in need. Nor is that information presented in a manner that attracts or engages Black women.
Speaking to engagement, Marissa Miller—the senior strategic director and organizer of the National Trans Visibility March—noted that it is not enough to take a cultural competency course; “One also has to put that knowledge into action,” she said. “We can’t just know what’s going on. We have to turn around and be culturally responsible.”
TheBodyPro recently noted that the key to providing better health outcomes for Black people means listening to Black health care workers. During a Q&A session, a participant pointed to the need for representative leadership when discussing informed interventions, so that “we’re not just the one person in the room who has to speak on multiple experiences of women and femme bodies and/or Black people.” Anecdotes shared during this session indicated that when one does not feel represented or comfortable with their care provider, discussions around personal needs fall to the wayside.
Spencer rounded out “Real Talk” by noting the need to empower Black young women with information about sexual health, because stigma prevents them from “accessing HIV care services or prevention services.” She also shared that a recent focus group conducted by NMAC revealed that having condoms was very important for women, because they “often don’t feel empowered to say no if a man does not have a condom.” But if a woman has condoms of her own, she is more likely to use them.
While speaking at the “Creating a Circle of HIV Care for Women” session, Tameka White—an HIV/STD prevention specialist in Kansas City, Missouri—shared that many of her clients did not understand the causes of HIV transmission. She also advised care providers to connect their HIV-positive clients to support groups and prevention intervention programs designed for people living with HIV, because an advocate or care provider will not be able to address every need that a patient might have.
In terms of building one-on-one emotional support, White says that she introduces herself as someone who is there to support a client’s health. “Be mindful of the language that you use,” she cautioned.
Rather than interrogating clients about missed appointments, she tells people, “I’m just reaching out to see how you’re doing. Do you need any help with anything?” In addition to disarming their defenses, this helps to inspire clients to manage their help with greater attention. “Ask them about life. You don’t just want to come at them talking about their HIV diagnosis.”
By establishing a relationship and showing that she cares about her clients, White said that she has been able to help them overcome their feelings of shame about their HIV status. It also helps her determine what impediments bar a client from successfully advocating for herself; be it a lack of money, stable housing, access to transportation, or information about where to go for help.
Empowering women with information about their status and HIV is incredibly important, Harrison shared, not only because it promotes healthier living, but because “research shows that they take steps to protect their own health and prevent transmission to others.”
Many Black women who seroconvert report that they were in monogamous, heterosexual relationships. The implication is that their male partners were not sexually exclusive. Whether this is accurate or not, the need for conversations with Black women about safer-sex options and STI transmissions is essential.
“Real Talk: Black Women’s Health Institute” and “Creating a Circle of HIV Care for Women” offered excellent resources and guidelines for holding those conversations with clients. But these talks—as well as increased testing and access to preventative care options—need to occur early, often, and all across the country if HIV transmission rates among Black women are to decline.