I began HIV pre-exposure prophylaxis (PrEP) in April 2015, while working as social worker helping young Black queer men navigate HIV prevention and care services. I initially met with my primary care provider because I had just turned 30 and wanted to get into the habit of keeping up with routine annual check-ups. I was also ready to start PrEP.
It turned out that, because of my work, I was more knowledgeable than my provider was about this—at the time—relatively new HIV prevention method. So, to better steer the conversation, I sent her information to read from the Centers for Disease Control and Prevention’s (CDC) website. She was hesitant, as I had expected. She had never heard of PrEP and believed condoms alone were a sufficient HIV prevention tool.
My provider eventually ordered the necessary labs and wrote my first prescription for PrEP, but I left her office feeling unsupported. At the time, I didn’t have a PrEP navigator to help inform those early conversations about myths, stigma, and misinformation or to help guide my decision to begin PrEP. Looking back, had I been a client-centered navigator guiding myself through that journey, here are some of the essential aspects of care I would have raised and made certain to fully talk through.
PrEP Prevents HIV—and Anxiety
Prior to starting PrEP, I was tested for HIV every six months for a decade. Each test was marked by anxiety and fear, feelings that persisted even after starting PrEP. In reminding me that PrEP was not 100% effective, my provider, perhaps unknowingly, continued to perpetuate those fears.
Two years into PrEP and consistently testing negative for HIV, I grew confident that PrEP worked—and with that confidence, the anxiety and fear I had experienced lessened.
As an advocate, I aim to provide accurate education about PrEP’s effectiveness. That means that instead of discussing PrEP not being 100% effective, I focus on how extremely rare it is to acquire HIV while on PrEP. And instead of relying solely on effectiveness statistics, I remind clients that currently more than a million people worldwide successfully use PrEP to remain HIV negative.
Daily Adherence Challenges Should Not Be a Barrier
Like many men my age, I was generally healthy when I started PrEP and had never had ongoing engagement with health care or taken medication longer than two weeks. Committing to taking a pill every day was a challenge I had never faced, which—like many clients I’ve counseled on PrEP use—made me question if PrEP was right for me.
After those first few years on PrEP, I began to experience pill fatigue. By then, I’d learned about on-demand/2-1-1 PrEP dosing, which involves taking a double dose of Truvada (emtricitabine/tenofovir disoproxil fumarate) between two and 24 hours before anticipated sex, one dose 24 hours after the initial double dose, and a final dose 24 hours after that. I also learned that PrEP can remain effective (granted, the effectiveness is lower) with missed doses. This experience taught me the importance of being aware of clients’ adherence challenges and discussing how to overcome those challenges. No one should be discouraged from PrEP due to worries about their ability to take a pill every day. Discussing dosing options and forgiveness can go a long way to reduce such worries.
Start and Stop PrEP as You See Fit
Statistics, such as that one in two Black MSM (men who have sex with men) in the United States will be diagnosed with HIV in his lifetime, create a sense of urgency to address disparities impacting the likelihood of Black queer men acquiring HIV. But they also strip us of our humanity and the autonomy to make our own health decisions.
I consider myself someone who, when given proper resources, can assess and manage my own HIV risks. Over the course of being on PrEP, for instance, I had periods in which I was not mentally, emotionally, or physically interested in having sex, so PrEP was not necessary. Yet, when disclosing that I’d discontinued PrEP for a period of time, my provider would frame it as an adherence issue, not a personal medical decision.
As a PrEP navigator, I’ve worked in clinic settings that, instead of focusing on patients’ disengagement in the program as a failure to adhere or comply, implemented client-centered practices, such as Same-Day PrEP—the process of getting PrEP into the clients’ hands the same day they come in to restart PrEP.
Clients are most knowledgeable of when PrEP is right for them. As advocates, we should be focused on creating an environment where when a client decides to stop and restart PrEP, we are creating as few challenges as possible for reengagement.
Seek Out a Supportive Provider
My first PrEP provider was hesitant to prescribe PrEP because I reported consistent condom usage. I thought, “I’m being penalized for practicing safer sex.” Worried she might not write the prescription, I blurted out, “I forgot to use condoms the last few times I hooked up.”
When we feel dismissed or like our concerns aren’t being listened to, we may often find ourselves in a position of having to embellish. My current PrEP provider is the complete opposite of my earlier provider, and because of that, I’ve grown the confidence to be honest with her and welcome her help in making sexual health decisions. Conversations with her about my sex life are just as transparent, honest, and fun as those I have with some of my closest friends. When I reengaged in PrEP care after taking a break for several months, she joked, “Oh, you’re trying to get back on PrEP so you can turn up for Black Gay Pride weekend?” My mouth dropped, and we both burst out in laughter. I knew in that moment that I had absolutely nothing to hide from her.
Unlearn the Stigma You’ve Been Taught About STIs
“Could you come in tomorrow for syphilis treatment?” the voice asked over the phone. “Yes,” I whispered from my office, terrified that one of my colleagues might overhear me. Here I was, going into the community, educating others about HIV and sexually transmitted infections (STIs), yet I had acquired syphilis.
In the exam room, waiting to be treated, I laughed awkwardly while explaining to the nurse treating me that it would never happen again. “We’re adults, it happens,” she said. It does happen—and accepting that changed my advocacy and approach to personal sexual health. If I have sex with someone, I discuss the last time I had an STI screening and whether I’ve had possible exposures since then.
I always encourage clients to have open, honest conversations with their providers about possible symptoms and types of sex they have, so they can be properly screened for STIs, and to practice disclosure to partners, to prevent further spread or reinfection. I’m also always careful to make sure that I am educating clients when discussing STIs, as opposed to further perpetuating stigma and creating barriers to testing, treatment, and disclosure.
Enjoy Your New Sex Life
Lastly, six years ago, if I’d known what I know now, I would have said to myself: “Enjoy your new sex life. Stop approaching each instance of sex with anxiety about the condom breaking or shame for not using a condom. Unpack the trauma, fear, and stigma that you internalized and perpetuated when it came to being intimate with partners who were living with HIV. Let your new sex life be one where love, pleasure, exploration, and intimacy are able to replace years of fear, anxiety, shame, and stigma.”