In a Rare Series of Candid Conversations, Three Women of Color Open Up About Their Decisions to Take PrEP, the Challenges They Faced Along the Way, and the
Impact Their Stories are Having in Their Communities
by Chip Alfred
Photographed Exclusively for A&U by Michael Kerner
Nearly a half-million women in the U.S. are eligible for PrEP, according to the CDC. So why aren’t more of them—especially Black women, who are at higher risk—taking it? And why are so few women on PrEP willing to talk about it? Major multimedia PrEP awareness campaigns have launched around the country to increase knowledge and uptake of PrEP among women of color, including #PrEP4Love Chicago (www.prep4love.com), D.C.’s #PrEPForHer (https://dctakesonhiv.com/prep/african_american_women) and #LetsTalkAboutPrEP (www.bwhi.org/prep/prep) facilitated by the Black Women’s Health Imperative. But it was a small-scale project in San Francisco that captured my attention. The “Share Your Story” blog campaign at HIVE (www.hiveonline.org/hive-blog) features real, uncensored accounts of women sharing their PrEP journeys. Now they tell A&U why they went public with their stories and what they want other women to know.
Monet, Christina and Nikole, all San Francisco Bay Area residents, have blogged for HIVE, an organization dedicated to reproductive and sexual wellness for people affected by HIV. Caroline Watson, social justice and communications coordinator, launched the campaign with a targeted outreach to recruit new contributors. “We wanted to reach [a diverse set of] women—[women of] lower socioeconomic status, sex workers, women with multiple partners, and women of color.” The ask, which is posted on the blog and distributed nationwide, is simple. Prospective bloggers wanting to share their stories are welcomed. A $50 stipend is offered for each blog published. Professional writing skills are not required, and blog posts can be anonymous. The blog includes “#Where’sMyPrEP?,” which spotlights the experiences of women with PrEP, particularly any obstacles they encountered in the process.
Monet (not pictured) is one woman who had difficulties getting information about PrEP. The twenty-nine-year-old student and single mom had her first conversation about PrEP at a local women’s clinic where she went for a routine pap smear. “The provider told me about PrEP, but she said that I didn’t need it,” Monet recalls. “I was confused. I wasn’t really monogamous, and I wasn’t sure why she thought I wasn’t at risk and didn’t give me more information.” At press time, Monet hadn’t started on PrEP yet, but after learning more about it, she is now considering it. “As a Black woman, people tell us what to do. They don’t really answer our questions or show us respect,” she comments. Now she believes PrEP “is an awesome discovery that doctors should be aggressively presenting to their patients. No one wants to contract HIV, and if there is a way to prevent it, people should have that option.”
When Christina Palacios was first offered the option to start on PrEP, she was hesitant. “I thought maybe it was a little too good to be true,” she discloses. “I didn’t think it was for me.” Since then the thirty-five-year-old student and former sex worker came to realize PrEP is a viable option for her. A PrEP user since 2016, Christina now educates her peers about it. “I talk to people at school, at the bus stop, the grocery store, parties, and anywhere else people will listen.” After a routine traffic stop landed her in jail for a ten-day stint, Christina saw it as an opportunity. “What is there an abundance of in jail? People of course, and where there are lots of people, there are many opportunities to educate people about harm reduction and of course PrEP!” Women aren’t always receptive to the conversation at first, she tells us, but they tend to listen when it’s someone who looks like them sharing her own story. “A lot of women are upset that they never heard of PrEP before. They also need to be reassured that PrEP is not a vaccine, and that they will not get HIV from taking the pill.” As a woman of color, Christina feels like a lot of decisions are made for her. “PrEP makes me feel empowered, like I’m in control of my sexual health. Being the open book that I am, I get to use my voice to help change lives and give other women power. I’m passing the torch.”
Nikole Trainor, thirty-four, worked as the multi-site coordinator on the U.S. PrEP Demonstration Project. She has been on PrEP since last year. “Women need to know that PrEP is also for them,” she says, pointing out that most social marketing ads and PrEP awareness campaigns have focused on men who have sex with men. “Reaching women of color requires innovative creative thinking with images and messages that women of color can resonate with. That includes more than just big flashy ads on billboards and bus stops.” Nikole would like to see PrEP awareness messages woven into women’s daily routines in places where they typically go. “I want to see PrEP messages when I’m at the gym, shopping, getting my nails or hair done, when I open my apps, listen to Pandora, and most importantly, when I visit my OB/GYN.” Making the decision to start on PrEP has given Nikole peace of mind and a sense of freedom. “I definitely feel more protected, confident in making healthy sexual decisions, and more in control when negotiating what type of sex I will engage in.”
Nikole says she is already prepared to start a dialogue with someone about PrEP. Everywhere she goes, she brings PrEP material with her. “When discussing PrEP with people, the first reaction is always, ‘OMG, for real?’ There is a pill that prevents you from getting HIV? Why haven’t I heard about this?” She explains that most of these conversations end up being about educating people and gaining their trust. “Especially in communities of color, people are skeptical to try a pill that is used to treat HIV-positive individuals. The more information people have, the better equipped they are to make informed decisions about their health.”
The goals of HIVE’s blog are to reduce stigma and to give women a platform for their voices. “You see gay men on PrEP Facebook groups and they’re very proud to be having the sex they want. Women get slut-shamed for doing this,” Watson explains. “We want women to feel empowered to own their casual sex lives and use PrEP if that makes them feel safer.” For several of the women who have shared their PrEP stories for HIVE, it was cathartic. “They feel powerful and valuable,” she says, noting that these outspoken women are having an impact. More women are learning about PrEP and asking HIVE for information and referrals. The objective is to create buzz around PrEP, and to encourage more PrEP Champions to spread the word in their communities. HIVE also features these storytellers online with the Hangouts with HIVE: PrEP Champions Lead the Way project, which offers guidance to medical providers and outreach workers about how to reach and engage communities around PrEP.
“PrEP is for anybody who feels they need it,” Watson emphasizes. “HIV prevention is not one size fits all. Everybody should have the knowledge about every HIV prevention option and choose the one or ones that make them feel comfortable and safe.”
For more information, visit www.hiveonline.org.
To find a PrEP provider in your area, visit: https://pleaseprepme.org.
For more information about photographer Michael Kerner, log on to: www.kernercreative.com.
Chip Alfred, an Editor at Large at A&U, is the Director of Development & Communications at Philadelphia FIGHT.