Among my friends, I am known as the "HIV guy". This has nothing to do with my HIV status, but rather is due to my job: I work as an HIV educator. Unfortunately, despite many advances in treatment and social issues, anything related to HIV is still considered a "big secret" by many in my community. When it comes to the people I know, the ones most likely to open up about their HIV status, or even just talk about HIV, are white. In the Latino community, you simply do not talk about it. I also have very few HIV-positive Latino friends who have come out of the "HIV closet" compared to my white friends. The biggest obstacle to PrEP in my community is HIV Stigma!
PrEP first became available back in 2012. Yes, it's been around for that long, but it seems that only now are people in my community finally talking about it. I have very few friends on PrEP, and some are embarrassed to talk openly about it for fear of being judged. This issue in particular does a great disadvantage to my community -- if we don't talk about it or share our real-life experiences, people will just continue to believe everything they read about it online.
My friends who have decided not to consider PrEP have many reasons:
"It's too toxic."
"It doesn't work."
"I have a partner."
"I don't sleep with many guys."
"I screen my sexual partners."
"I'm a top, and tops don't get HIV."
Toxicity seems to be the most popular reason people I know decide not to consider PrEP, but many of the same people who tell me that PrEP is too toxic expose themselves to nicotine, alcohol, other medications, and recreational drugs, and never think twice about the impact of those substances on their overall health.
Another issue I find is that many people I know decline PrEP because they are in relationships and consider themselves to be at very low risk for HIV. But I know many of them have sex outside those relationships and don't always use condoms when they do. I know this is a bigger issue that goes well beyond PrEP. I wish our community would begin to talk about the fact that some people may not consider sex with only one partner for the rest of their life an ideal.
Some of my friends decided to start PrEP with the idea that they would no longer use condoms. To them, PrEP was the answer for condomless sex. They felt a sense of freedom -- a rebirth of the sexual revolution after decades of having condoms as their only protection against HIV. But one of them got gonorrhea twice and syphilis once since staring PrEP a year ago, and is now rethinking his sexual freedom.
I've been in situations where I'm ready to put on a condom but have been told, "You don't need to -- I'm on PrEP." But I wonder: if they're ready to have anal sex with me without a condom, does that mean they're doing it with others? My answer is always the same: I use a condom because PrEP does not protect me against other ST Is.
Many people forget that PrEP is not 100% effective -- it's supposed to be used with condoms. Birth control pills are also not 100% effective and have a long list of potential side effects, and some women become pregnant while taking them. But society accepts these facts. We have seen just two cases of people getting HIV while on PrEP, and people are already losing faith in its efficacy.
If we had a pill that protected against chlamydia and gonorrhea, people would be more than willing to take it. I have tons of friends taking medications to suppress herpes without any concerns or fear of stigma. Why? Because herpes does not carry the same stigma as HIV. A herpes diagnosis is something common that can happen to anyone, but HIV stigma is so strong in my community that an HIV diagnosis is seen as something that only happens to "certain people".
It's much easier for people to just ignore the problem. Many do not even want to think about HIV at all, much less take a daily pill to prevent it. Wrong, outdated messages continue to damage our community -- their perception of risk is shaped by how attractive or sexy a person looks. The amount of misinformation I hear from friends, and even social service professionals, is remarkable. Many of these myths come from the '80s and continue to haunt people today. One in particular that comes to mind is, "If I had HIV I would know it." Why would you take a pill to prevent HIV if you thought your risk for it did not exist? Many gay Latino men lack a clear perception of risk, leading them to make health decisions based on myths, not science.
I was recently talking about PrEP to another gay Latino friend at the gym. He clearly expressed his dislike for it, saying that PrEP was only for people with many partners, and that long-term side effects were a big problem. He said he would never use it. He added that he was able to tell if someone was HIV positive by looking, and would never have any kind of sex with someone who had HIV. To him even a kiss would be too risky. As we continued to talk, I tried to educate him about basic HIV risk, but he wasn't interested in any other point of view. The conversation about PrEP ended, and his final advice to me was to try steroids to increase my muscle size! Clearly, we have a huge disconnect in our communities as to what is socially acceptable and what is not. The use of performance-enhancing drugs has been linked to severe negative health outcomes but is not stigmatized by many.
We are asking people to take a pill to prevent HIV when many of them are unable to even ask for an HIV test for fear of being outed as gay. How can we expect our community to embrace PrEP when people are afraid to be seen taking an HIV med, even though it's just for prevention?
I think many of the prevention messages in my community are misunderstood. Messages like "Undetectable = Uninfectious" are being disseminated by word of mouth and not by medical providers or community educators. Once again, we see stigma in action -- many people are more comfortable Googling in private than visiting a community-based organization and running the risk of being seen. If we can't even talk openly about HIV, how are we going to talk about medications to prevent HIV?
But the Latino gay community in New York is resilient. I am confident that through community efforts, targeted outreach, and proper social messages, we as Latinos will soon come together and embrace the possibility that HIV is not "the monster", and that any sexually active person -- no matter what age or gender -- may be at risk for HIV.