But because of the many layers of prejudice with which Black women already contend, especially in medical environments and as it relates to sex, the use of “risk” to describe their status for a sexually transmitted infection isn’t supportive but stigmatizing. And it’s for that reason that HIV pharmaceutical company ViiV Healthcare launched “Risk to Reasons,” a philanthropic initiative designed to shift the conversation about HIV in Black women away from risk (and the blame it insinuates) and toward positive reasons to seek prevention and care.
The company landed on this risk-to-reasons pivot after convening a 12-person group of longtime Black women advocates and emerging leaders in the HIV movement to assess how and why current HIV initiatives haven’t alleviated the impact of HIV on Black women in the way that they have for other groups. (A few poignant examples: According to research published in 2018, despite higher rates of diagnosis, fewer Black people with HIV than white or Latinx people are taking medication to suppress their viral load or taking PrEP to prevent against transmission.) What they determined is that, though the labeling of Black women by health-care practitioners and the media as “at risk” is intended to boost preventative care, it’s had an opposite effect.
“The word ‘risk’ is scary and implies that you’re doing something wrong or risky,” says Amelia Korangy, ViiV’s director of external affairs. In the context of a sexually transmitted infection, in particular, the designation of “risk” also turns sex into a risk factor, divorcing it from any notion of pleasure, intimacy, or desire, and thus denying Black women these fundamental elements of sexual well-being and self care.
Pleasure isn’t something to be avoided or feared due to the risk of contracting HIV, but instead, the seeking of pleasure can serve as a reason why a Black woman may choose to be proactive against the virus.
By refocusing on the reasons why Black women may want or need to seek HIV testing or care, the “Risk to Reasons” initiative is also turning that sex narrative on its head: Pleasure isn’t something to be avoided or feared due to the risk of contracting HIV, but instead, the seeking of pleasure can serve as a reason why a Black woman may choose to be proactive against the virus.
The initiative itself includes a commitment of $8 million to 18 different Black women-led organizations across the country to support new HIV-prevention programming with this reasons-focused narrative. And as of this month, it also includes the launch of a series of three activity workbooks (free to download) expanding on pleasure and intimacy as, again, valid reasons why Black women may want to engage in HIV prevention and care (more on that below).
Why Black women are disproportionately affected by HIV
At a top-line level, Black women are more predisposed to contracting HIV than white women because the prevalence of HIV is higher in the communities in which they commonly have sex—which then drives new transmissions, says Korangy.
Additionally, the social determinants of health—driven by systemic racism—may also limit Black women’s access to prevention and care. “If, for example, you don’t have money or a local clinic to get testing, how will you know you have HIV? And if your partner(s) don’t have access to health care, how will they know they have HIV and could pass it to you?” says nurse practitioner Adrienne Ton, ARNP, director of clinical operations at STI-testing company TBD Health. This lack of access to care also creates room for misconceptions to form among Black communities about the risks of HIV transmission and the role of medications like PrEP.
Even if Black women are able to seek HIV care from a health-care provider, they may still decide against it because of deep-seated (and valid) mistrust of the medical establishment. “When it comes to health outcomes, we see that Black women have a disproportionate burden of medical conditions,” says Ton. And the same structural problems at play for any health issue are likely contributing to poorer outcomes for STIs, too, she adds.
In the same vein, Black women might steer clear of HIV testing because of the stigma often linked to HIV, which is, again, further magnified by their inclusion in an “at-risk” group. And if they do seek care, there’s certainly a chance that they’ll face bias from a health-care provider.
“We hear a lot about women being told, ‘no’ by a doctor [in response to requests for preventative HIV medication] because they’re not sufficiently ‘at risk.’” —Amelia Korangy, ViiV Healthcare director of external affairs
“Black women are often not sufficiently heard by the medical system,” says Korangy. “For example, we hear a lot about women being told, ‘no’ by a doctor [in response to requests for preventative HIV medication] because they’re not sufficiently ‘at risk,’ whatever that means.”
By dropping the concept of risk and focusing instead on reasons, ViiV’s initiative is designed to help Black women advocate for the reasons why they may want to take precautions against HIV (or seek HIV treatment), whatever they may be.
How centering pleasure as a reason for prevention may improve outcomes for Black women
One of the core reasons for HIV prevention that emerged from ViiV’s research sessions with the group of Black women HIV advocates includes pleasure, intimacy, and desire. Pursuing these things is an essential part of sexual well-being and overall self care, and you’re more capable of doing so if you feel secure and protected against HIV. In this narrative, the messaging isn’t, “You’re doing something wrong [by having sex],” but rather, “You’re doing something right, and here’s how to lean into it in a way that keeps you healthy,” says Korangy.
The activity workbooks offer Black women the tools to do just that. They include writing prompts, exercises, and conversation starters designed to dismantle the shame around sexual pleasure and HIV alike, and fill in the gaps in pleasure literacy created by inadequate sex education. Each is organized around a key stakeholder on the path to HIV prevention—one’s self, an intimate partner, or a health-care provider—and offers strategies for engaging with each, so that Black women can better understand their own sexual desires and needs, and feel more comfortable advocating for them across the board.
To spread the word on this positive messaging, ViiV has also partnered with Black women celebrities, including singers Tinashe and Baby Rose and drag queen and TV star Ts Madison, who often uses her platform to educate followers on the importance of drugs like PrEP for HIV prevention.
To Madison, the biggest value in the “Risk to Reasons” initiative is in removing any semblance of blame. “The focus shouldn’t be on whether a woman has been ‘promiscuous,’ or how many sexual partners they’ve had, or what kind of relationship they’re in—because it only takes one [to get HIV],” she says. “I believe any woman should be able to explore any kind of sexual relationship as many times as they want, so it’s more like, ‘Why not take steps to be protected [so you can do that safely]?’” That is, a thriving sex life—with any number of sexual partners—can be a reason for proactive HIV prevention and care, and not just a risk factor.
