The Needs of the Community: How PrEP Can Help Us Get Our People to Zero New Infections

If you’ve been paying attention, you know that 1 in 2 Black gay men and 1 in 4 Latinx gay men in the United States will contract HIV in their lifetime. You can go further and note that Black women are 16 times more likely to contract HIV than white women. As Dr. Charlene Flash emphasizes, these statistics will not improve if nothing changes.

The missing piece in engaging Black and Brown communities with PrEP is the action around what to do. What does that engagement look like? I, by no means have all of the answers, but I can offer some expertise in this area as a queer Brown PrEP activist and provider. PrEP is much more than a pill to prevent HIV, and there are different players involved that can add barriers at every point. I’m going to breakdown some of these barriers while centering Black and Brown communities.  

Some background about me: I began engaging with PrEP work in Spring 2013, doing outreach in Oakland and Berkeley as a volunteer, then becoming an HIV test counselor at Magnet, the sexual health clinic of the San Francisco AIDS Foundation, in San Francisco before becoming the Manager of the PrEP program in 2016. My clinic has enrolled over 3,500 individuals on PrEP since November 2014. We pioneered PrEP Navigation for the US and continue to lead the field in engaging, retaining, and innovating our program. In my time overseeing the program, we’ve double the amount of Latinx and Black individuals in our program and continue to work towards making our clinic and services accessible to our communities.


What does PrEP really do?

PrEP is life changing. One of the biggest side effects of PrEP that is rarely discussed is the emotional effect people experience when they start PrEP. Individuals can fully engage and enjoy their sexual acts without fear of HIV (regardless of their relationship to condoms). For decades we’ve been taught to feel shame or fear when we have sex. Lingering thoughts around condom use, status, stealthing, etc. after each sexual act. Now with PrEP, those fears are quieted because we know PrEP works and is extremely effective in preventing HIV. We can count the amount of PrEP failures on one hand and still have digits to spare.

Additionally, because individuals on PrEP get tested every 3 months as part of their maintenance, clients find that they are not worried about HIV and this shifts their whole relationship to their clinic visit. When I got my first HIV test, I hadn’t even had sex yet, but I was so scared of the result because that’s how I was raised: to have this overwhelming fear of HIV. When I get tested now, I’m not worried about HIV, I’m just waiting on each sexually transmitted infection (STI) result come through like no whammy, no whammy, stop!


Let’s talk about STIs

Using fear to control people’s behaviors is so 90s. Individuals on PrEP are continuously scapegoated for causing increases in STIs. Let’s get the facts straight:

  • There aren’t any studies showing a direct causal relationship between PrEP use and STIs

  • STI rates were rising before PrEP was introduced to public health

  • Condom use was declining before PrEP was introduced to public health

  • PrEP users are tested for STIs and HIV more frequently than anyone else and are leading the way in breaking chains of infections throughout the world

  • It is unclear if the rise is linked to people living with HIV, non-PrEP users, or PrEP users

  • There have been no studies showing if the link is specifically a rise in rectal STIs (which would link to condomless anal sex); we also know STIs can live in the throat and many individuals (PrEP users and non-PrEP users alike) don’t perform oral sex with condoms

  • HIV rates have dropped dramatically since PrEP has been introduced to public health

The challenging part of dealing with inflammatory, clickbait articles is that they lower people’s confidence in PrEP.  This is especially true for communities that already have medical mistrust and are contemplative in their PrEP decision making.


What else does PrEP do?

PrEP allows individuals to engage in multiple forms of physical intimacy. Individuals have been living with fear of bottoming, barebacking, or any form of penetrative sex. What we see is that PrEP provides safety and security to explore previously taboo or shamed acts of sex. Condomless sex while on PrEP provides more options for sexual exploration.

PrEP has given us a tool to take prevention into our own hands. I’m not just talking about gay/queer men of color or trans people of color, I’m talking about cisgender women of color too. I’m talking about individuals who may not have the agency to discuss prevention with their partners, people who do sex work or experience intimate partner violence.  The inevitability mentality that envelops Black and Brown communities that cause us to believe that it’s only a matter of time before we seroconvert has shifted. We have a resource that is fully in our control to manage and that is powerful.


How do we ensure PrEP is available to communities that would benefit the most from it?

Currently, PrEP enrollment efforts are replicating decades of health disparities that has existed between Black and Brown communities and white communities. We know that young gay/bi/queer Black and Brown men as well as Black women are experiencing the weight of new seroconversions in this country, yet the face of PrEP is white and gay. What can we do?

Representation matters. My team of PrEP Navigators are all Black and Brown individuals of different backgrounds because if we’re seeking to prioritize and engage communities, we need people who look like us doing the work. The way my clinic has been able to double the amount of Latinx folks on our PrEP program is because they’re engaging with someone who speaks to them in the language they are most comfortable in, we share a cultural bond and can create rapport instantly, and when they have a great experience at our clinic, then they tell their friends, lovers, networks to join our program.

Some positions are more difficult to find candidates that are reflective of communities we need to prioritize, such as nurses and doctors because of structurally racist institutions like higher education and medical school; however, you can still do your best find and hire skilled practitioners of color. If it is challenging, then ensure that all of your other frontline staff, such as receptionists, lab techs, PrEP Navigators, outreach workers, case managers, etc. are reflective of Black and Brown communities.

Create low thresholds for people to make appointments, access prescriptions, and re-engage in your program. Black and Brown communities have competing priorities and sometimes that presents itself in missed appointments. However, by creating protocols and best practices for individuals to stay on their medication, it not only demonstrates your commitment to those individuals, but also allows for better engagement.

It is important to think about the needs of the community being served as you determine strategic solutions for engagement. At our site, we have clients who miss appointments, but when we reach out and are able to connect with them, we always ensure that they have enough prescription until they are able to come in because we would rather work with them to get into the clinic than stop their medication because of competing priorities. Additionally, my team will handle everything for the client from calling in their insurance information, following up to ensure they picked up their prescription, or walking them to the pharmacy to ensure that there are no issues in accessing their medication. Individuals who may have already been on the fence about starting PrEP if they face any issues accessing their medication that can be enough to discourage them from starting, so we remove that barrier for them.

I don’t have all of the answers to engaging Black and Brown communities, but my clinic is making strides and trying new things to be more effective. Even here, there are areas of our practice that need to be adjusted. One of my goals would be to block PrEP enrollments for my site and only schedule individuals that need it the most. We know HIV rates in San Francisco have been going down, but not for Black and Brown communities. White people are contracting HIV at lower rates, but we (my clinic too) are adding to the disparities by not sharpening our focus on underserved and under-resourced areas. I would like to be a site where if a Black or Brown person states that they want PrEP, they can get it in that moment instead of being scheduled for an enrollment in a week or two. What we’ve been doing has worked for some, but we need to collectively try new things to get to zero new infections


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