At the 2017 United States Conference on AIDS (USCA) in Washington, D.C., a concerning tale was recounted by Leisha McKinley-Beach from the Black AIDS Institute.
"My husband and I [who are both HIV negative] had the same primary care doctor," she explained during a workshop on Sept. 9 entitled "Black Women and PrEP," which was sponsored by the Black AIDS Institute. "When it was his turn for a physical, our doctor said that he was going to run a series of tests including a glucose check, cholesterol check and HIV. He didn't miss a beat. I was so impressed that I wrote our doctor a note telling him so," she said.
"A couple of weeks later, I went for my own checkup," she continued. "The same doctor said he was going to test me for glucose and a cholesterol check -- and that was it. I said, 'I would like to have an HIV test.' He looked at my chart and said, 'I'm sorry. I thought that you were married.'" After expressing her concern to him about this gross oversight, her physician gave her the test.
McKinley-Beach's story is familiar to many American black women, whose care providers often don't think to ask them about or offer to test them for HIV, even though HIV affects them far more than women of any other race or ethnicity. (Although, at the same time, HIV rates among black women have dropped sharply in recent years.) These same oversights come into play when it comes to care providers not telling black women about the option of pre-exposure prophylaxis (PrEP), the HIV-prevention pill regimen.
Care providers often make assumptions about black women, such as that if they have been long married, they are not at risk for HIV, regardless of their or their spouse's sexual or drug-using history or current practices. Yet, with proper education, health educators and providers can set their own personal biases and blind spots aside to deliver potentially lifesaving information and options to this high-risk but underserved population.
Here are three takeaways for providers that McKinley-Beach and other leaders shared at USCA regarding black women and PrEP:
Black women are still not getting the message about PrEP. According to a survey conducted by the Black AIDS Institute at the 2015 Essence Festival in New Orleans, 80% of black women reported that they had never heard of PrEP but were receptive to hearing more about it, McKinley-Beach said. When asked whether they knew where to get more information about PrEP, 55% said no.
Clearly, there's an information gap among black women about PrEP. Media materials promoting PrEP are slowly expanding from LGBT-focused ones to ones targeting heterosexuals, but they still don't seem to be widely available in areas with heavy concentrations of black women.
One participant in the "Black Women and PrEP" workshop, a community health worker in Richmond, Virginia, spoke about the dearth of PrEP information in her area. "I have never seen any ads about PrEP," she said. She only learned about it, she added, when she saw a notice at the health department where she had taken a client to get her HIV test results.
Thankfully, the Kaiser Family Foundation's Greater Than AIDS campaign has a host of resources for diverse communities looking to spread the message about PrEP.
In order to reach black women, educators need to get into their networks. Many black women rely on their social networks -- including places of worship, hair salons, sororities and community and professional organizations -- for health information. Such networks are familiar, trusted places to have honest conversations about concerns. That's why it's so important that HIV educators identify and reach out to such networks.
According to Marie-Fatima Hyacinthe, mobilization coordinator for the Black AIDS Institute, educators need to pay close attention to how messages are crafted. "It's really important we think about how we craft education messages because it's not necessarily just the person that you are thinking about who would be a good PrEP candidate. It's the entire network that we need to be talking about. It needs to be her sisters, her family and her friends. It needs to be her brothers and cousins. It needs to be her teaches and coaches. We need to be thinking about this entire network of folks." Hyacinthe also suggested that educators craft their message to specifically mention that PrEP is an excellent option for women, since it reduces the risk of contracting HIV by more than 90%. Results speak volumes.
Black women need help to have conversations about HIV and PrEP. In that same 2015 Essence Music Festival survey, black women were asked whether they were in a monogamous relationship with someone who was confirmed to be HIV negative. Out of 355 respondents, 70% said no, Hyacinthe said. Although it's uncertain whether those who said no meant that they weren't in a monogamous relationship or that their partner wasn't confirmed to be HIV negative, the high percentage still suggests that black women need to be talking more openly among one another, and with sexual health educators and providers, about their relative risk for HIV and other sexually transmitted infections.
A similar Black AIDS Institute survey conducted this year found that only 45% of respondents said they always asked their sexual partners about their HIV status. Data like these speak volumes about the lack of communication in black women's relationships. They need help initiating such conversations and negotiating condom use with their partners. And should those efforts fail, they need help figuring out whether PrEP is the right option to prevent them getting HIV.
Overall, health organizations need to think more creatively about how to bring information about HIV and PrEP to black women. Reaching out to black women's social networks is a great place to start. Collaborations with other support agencies to integrate PrEP into preexisting conversations could also widen the net.