The PrEP4Love Campaign helps to empower youth
by Chael Needle
Log on to the PrEP4Love.com website and, in a few words, the community-based campaign summarizes its core message of empowerment and sex positivity: “Love is contractible. Lust is transmittable. Touch is contagious. Catch feelings, not HIV.”
Led by AIDS Foundation of Chicago (AFC) and the Chicago PrEP Working Group (CPWG), the PrEP4Love campaign seeks to “engage with all communities in Chicago, particularly young gay and bisexual black men, transgender women of color and heterosexual black women,” according to its literature. And, importantly, PrEP4Love seeks to emphasize how the fairly new prevention technology benefits the user in relation to staying negative—a greater peace of mind during sex; a greater sense of control of one’s own sexual health and wellness and safety in one’s relationships; and an active way to nurture pleasure and intimacy among partners, whether long-term or short-term, among others.
The client-centered, holistic approach makes sense. Engagement in care starts with engaging in yourself. And youth, in particular, need extra support in working toward a head space and heart space where they can make self-sponsored choices about their lives.
Campaigns like PrEP4Love are needed, especially among youth who may be vulnerable to HIV. In the U.S., in 2016, 1,675 youth between the ages of thirteen and nineteen were diagnosed with HIV, representing roughly four percent of diagnoses overall. And, in an era where safer sex education in schools can be stigmatizing and LGBTQ youth, youth of color, and undocumented youth are under attack, campaigns like PrEP4Love are needed to nurture the next generation.
Accessing care in general may be difficult, and advocates and organizations are working to dismantle cultural barriers and lower drug costs, among other efforts, but it has been made at least a little earlier by a new indication for Truvada (tenofovir/emtricitabine) as PrEP.
In May, Gilead Sciences, the makers of Truvada, shared the news that the U.S. Food and Drug Administration (FDA) has approved the drug as pre-exposure prophylaxis (PrEP) for the prevention of HIV-1 in at-risk adolescents (weighing at least 35 kg, or roughly 77 lbs). Truvada, a once-daily oral regimen, has been approved as PrEP for adults since 2012.
Both indications advise that, in the context of sex, PrEP should be combined with other practices, such as condoms, to reduce the risk of HIV-1 acquisition. The iPrEx study showed that daily PrEP is ninety-nine percent effective in preventing HIV-1 acquisition (more effective, in fact, than condoms). For injection drug users daily PrEP is seventy percent effective in preventing HIV, according to the CDC.
The FDA based its approval on ATN113, a study that enrolled seventy-eight HIV-1 negative young men who have sex with men (YMSM), ages fifteen to seventeen. In the previous six months, enrollees had reported behaviors considered high risk for HIV-1 acquisition, including condomless anal intercourse with an HIV-infected male partner or a male partner of unknown HIV status; an exchange of money, gifts, shelter, or drugs for anal sex with a male partner; a sexual partner of an HIV-infected male with whom condoms were not consistently used; or at least one episode of anal intercourse where the condom broke or slipped off, among others.
In ATN113, a single-arm, open-label clinical trial conducted by the Adolescent Medicine Trials Network for HIV/AIDS and led by Sybil Hosek, PhD, all participants received Truvada once daily for PrEP. The study found the safety profile to be similar to that in adult trials of Truvada as PrEP; the most common side effects were found to be headache, abdominal pain and weight loss. The study also monitored bone mineral density (BMD) and four study participants’ BMD decreased through forty-eight weeks (three adolescents had a modest decrease and one had a >4 percent decline in total BMD at Week 24). Other studies have shown that side effects range from mild (temporary nausea and headache, for example) to more severe (with small numbers of people seeing kidney function changes).
So, according to the study, “Safety and Feasibility of Antiretroviral Preexposure Prophylaxis for Adolescent Men Who Have Sex With Men Aged 15 to 17 Years in the United States,” by Hosek, et al., published in the November 1, 2017, issue of JAMA Pediatrics, Truvada as PrEP was found to be safe and well-tolerated. However, adherence decreased over time and, among those with poor adherence, STI rates were high and HIV acquisition occurred. According to the study, “[o]ver 48 weeks of PrEP use, 23 sexually transmitted infections were diagnosed in 12 participants. The HIV seroconversion rate was 6.4…per 100 person-years.”
This gap between efficacy and adherence is where campaigns like PrEP4Love can step in, providing ongoing support to youth who may choose to use PrEP as a prevention option.
A&U had the opportunity to interview Jim Pickett, Senior Director of Prevention Advocacy and Gay Men’s Health for the AIDS Foundation of Chicago, about PrEP as a self-empowered prevention approach, tailoring outreach messages, and dismantling barriers to access.
Chael Needle: Why does the PrEP4Love campaign focus on self-determination/love as opposed to other strategies such as fear?
Jim Pickett: The PrEP4Love campaign focuses on intimacy, desire, connection, love, and self-determination because they are universally human and empowering. Desire and intimacy are core components of our sexual lives, and, for far too long, they have been ignored in messaging around HIV prevention. We want to elevate these feelings, we want to underscore they are important, we acknowledge their centrality in our lives. Focusing on fear works—but only for a very short time, and then it doesn’t work at all. Never mind that a fear focus does a disservice to our communities—why would we want to introduce that poison into our collective lives when it is absolutely not necessary?
What success have you seen with PrEP4Love? What challenges are you still working on to address?
The PrEP4Love campaign has been successful in a number of ways. We’ve reached our focus audiences—young gay black men and women, inclusive of transgender women—with important information that normalizes PrEP and centers it in the intimacy of our varied relationships. We know this by traffic to our website, the behavior of website users once on PrEP4Love.com, by the communities’ social media engagement with our content on Facebook (@projectrsp) and on Instagram (@prep4love).
In addition, our PrEP4Love LIVE events have been well attended. In 2017 we were honored to receive awards from the Chicago Reader and POZ Magazine, naming our campaign as Best Advertising Campaign and Best HIV Prevention Campaign respectively.
Our challenges are typical of other social marketing campaigns. It can be challenging to keep our campaign-related content fresh and interesting, plus social media is a never-ending, 24/7/365 task. You are never done! And we recognize our campaign doesn’t reach everyone who is vulnerable to HIV in Chicago. One way we are addressing that is by developing a Latinx “sibling” to join the PrEP4Love family, with funding from the Chicago Department of Public Health. We have a working group of more than sixty Latinx leaders in Chicago who are helping us figure out the best way to adapt the campaign to bring in our Latinx family members who also need to know about PrEP. We just finished a series of stakeholder interviews, and are gearing up for focus groups. Then comes the fun (and super challenging) part of interpreting all the input and developing beautiful, engaging, dynamic creative that speaks to people directly and honestly, from a place of love.
In what ways does AFC tailor HIV prevention outreach for a youth population (primarily YMSM)? Any changes now that PrEP is formally indicated by the FDA?
Now that FDA has expanded the PrEP indication to include young people under the age of eighteen, we have our work cut out for us. Luckily, we lead the statewide Illinois PrEP Working Group, which includes over 300 members representing PrEP research, clinical delivery, navigation, education, training and advocacy. We will be looking to this group—which actually includes the Chicago-based research team that conducted the study that led to the adolescent indication, among other experts in adolescent health and psychology—to help us all make the promise of PrEP come true for young people. Reaching adults has definitely not been easy, considering the myriad barriers to uptake including stigma, homophobia, transphobia, misogyny, complex medical systems, structural racism, and distrust around healthcare in general. We will face these same challenges with young people, plus other barriers related to their age, to sex education which is often non-existent or terrible, and the list goes on….
Has the campaign found greater acceptance of PrEP as part of comprehensive prevention versus earlier generations who may have become accustomed to condoms as the primary prevention tool?
It is my opinion that—generally—older folks have had a bit of a harder time accepting PrEP as a valid prevention strategy, particularly those who survived the very rough years of the eighties and early nineties, and for those who only ever knew condoms as the prevention strategy in terms of sexual transmission. Younger folks who did not experience the AIDS holocaust, and who have not had decades of condom-focused messaging, seem to be more open and willing to embrace new strategies. That said, change is hard for everyone, regardless of age, and not all of us are wired to be early adapters. Just like all of us are not rushing out for the newest iteration of the iPhone, for instance, not all of us are rushing to try a new prevention method. That isn’t a diss, it just is.
Anything I haven’t covered that you think is important to address?
Prevention of HIV has always been tricky, with it being wrapped up tightly with sex and drugs. We live in a very moralistic culture that also is saturated in sex. It is tough to understand what our vulnerabilities are to things like HIV, because of stigma and shame. We also have collectively done a disservice to our communities with too much focus on individual factors when it comes to assessing HIV vulnerability. We need to talk more about structural factors, about community factors, about things that are not in the control of individuals, about things that are not about individual behaviors, but contribute a great deal to one’s vulnerability. Being a very individual-focused culture—that can be challenging for people to accept and understand—how likely you are to come across HIV is way more than your own behavior; there are so many influences that can increase or decrease your vulnerability. And we can’t just talk about these structural factors—we have to tear them down and replace with structures that fully support who we are wherever we are, whoever we love, in whatever way we connect.
Truvada is the only anti-HIV med currently approved for PrEP. Other meds are currrently being studied for their efficacy as PrEP. Researchers are also studying other methods of delivery, such as long-acting intravaginal rings, injectables, and implants, in part to help individuals who may have trouble with adherence but also avoid pill fatigue. No matter what drugs PrEP consists of or how it is delivered, we still need campaigns like PrEP4Love to help realize sexual health empowerment in people’s daily lives.
For more information about PrEP4Love, log on to: www.prep4love.com.
Chael Needle is Managing Editor of A&U. Follow him on Twitter @ChaelNeedle.