There were times I lived with HIV and was not on any medications. I was quite honest and upfront about my diagnosis and where I was in my journey. Technically, I was obligated by law to disclose. I remember being shamed about how irresponsible I am for putting so many men at risk because I was not taking meds. I can remember the judgement rendered when I would be out on dates and I would lawfully disclose my status. He would ask if I was on meds. I’d say no. There was no sex. There was no callback, but I would often receive a text message condemning me for not being more responsible.
So explain something to me: I’m now doing everything I can to keep myself and my sex partners healthy. I’m taking my antiretroviral therapy (ART) because everyone from the doctor to the market researchers are bullying me into the campaigning Getting to Zero and U=U in every aspect of my life—and I’m being met by HIV-negative folx who leisurely start and stop pre-exposure prophylaxis (PrEP). I can’t help but wonder: Is it just up to the HIV-positive community to counter HIV transmission rates?
Moments before COVID-19 and social distancing began, I was still living my best life: brunching in Brooklyn, happy hours in Washington, D.C., and obtaining so many new and shiny Pokémon. It was during these moments of pre-COVID that friends casually shared with me their experiences with PrEP. Little did I know I would soon encounter several gay men and other men who have sex with men (MSM) abandoning their PrEP prescriptions. Their reasoning varies, but their privilege is all the same.
I’m beginning to once again feel stigmatized for living with HIV. Undetectable or not, I am feeling ostracized, and I want to be accountable for my personal convictions. The responsibility of HIV prevention often falls on the HIV positive, and specifically HIV undetectable. Engage in as much condomless sex as you want—did you take your pill, though? Date whoever you want. Did you disclose your status? Are you strong enough to counter the stigma?
It feels like the responsibility and charge to achieving an HIV-free world rests solely on those of us living with HIV. We occupy an ever-evolving world of modified antiretrovirals and campaigns that bully us into obtaining and sustaining undetectable viral loads. An HIV-free world seems only possible when we disclose our status and when we the infected commune amongst our own.
Just a quick refresher: “Undetectable” refers to the state when a person with HIV has taken enough medication so that the literal amount of HIV in their blood is so miniscule, it is no longer detected on standard tests. ART stands for antiretroviral therapy, the drug regimen that people living with HIV take, while PrEP is the daily pill negative people take to prevent them from HIV infection. U=U stands for undetectable equals untransmittable, meaning people who are undetectable cannot transmit the virus to HIV-negative partners sexually.
Until shows like Pose, RuPaul’s Drag Race, and Rachel Maddow (I forced it) were on the TV screen, campaigns about HIV awareness were marketed mainly to those of us living with HIV. You’d see the random white heterosexual couple cheesing over the latest KY products and Trojan condoms—but my HIV-negative brothers, sisters, bristers, and sothers didn’t get a campaign slogan. As someone living with HIV, commercials by KY, Trojan, and Gilead seem to affirm the sexual identities of HIV-negative persons, while the commercials focused on persons living with HIV always seem to be some sort of public service announcement.
There was such a heavy emphasis on 90-90-90: “The idea is that by 2020, 90% of people living with HIV will be diagnosed, 90% of people who are diagnosed will be on antiretroviral treatment, and 90% of those who receive antiretrovirals will be virally suppressed.” We’re just about through 2020, and I know this particular vision of grandeur has not been met. I don’t want to sound extra spiritual, but Proverbs 29:18 of the King James version of the Holy Bible states: “Where there is no vision, the people perish.” So I ask again, is it the sole responsibility of persons living with HIV to carry out the vision of countered HIV transmissions?
The following interactions and conversations lead me to ask: As someone living with HIV and striving to live an undetectable life, what is the vision and hope for PrEP? In the few conversations I’ve engaged in with folks no longer adhering to PrEP, I feel I may have found my answer. A friend recently said to me that PrEP makes him feel like he can have more meaningless sex, and he wants a real relationship now. This one friend (we’ll call him Magikarp) said this to me while walking around catching Pokémon on a Saturday morning. Of course, I’m summarizing what he said, but trust me—this is the spirit of what he shared with me. He had just participated in a threesome four days prior. I pressed a little more and asked what protections were utilized. He chuckled—he had stopped PrEP the two months before.
By no means am I suggesting that this logic cannot be transposed for someone who is living with HIV and chooses not to adhere to ARTs until they’re ready for monogamy. I guess my takeaway is that I should stop taking my HIV meds until I’m ready for a real relationship—in order to protect the partner I choose to care for.
In the earliest weeks of the COVID-19 pandemic, right before America attempted to shut itself down, I was out to brunch with a few friends. As my mimosa was being refreshed, one of our crew members—who at the time was engaged in a new relationship—shared that he and his partner are pretty monogamous. In other words, he and his partner were not entirely open, nor were they exclusive. I have no idea what he’s doing, does, meant, or means. What he made absolutely clear to me is his belief that he has enough PrEP in his system that he can’t contract HIV. Before you have to ask, yes—I did explain that PrEP is not a vaccine, rather an extra weapon in the arsenal of engaging in fighting HIV transmission.
One of the most jaw-dropping revelations regarding the privilege of PrEP came from a friend who I caught up with while interviewing for a job in Los Angeles. He shared that PrEP makes him gain weight, stating verbatim and with so much conviction, “I don’t do that sh*t anymore.”
Their truth, combined with how messaging places sole responsibility on people living with HIV, leaves me feeling speechless—not because I can’t find the words, but because I’m trying to employ solution-based approaches and feelings. HIV-negative folx start and stop PrEP because they can, and it costs them nothing to think about the ramifications it places on my psyche. If I choose to stop adhering my ARTs, I perpetuate stereotypes and stigmas regarding the irresponsible and sickly Black gay man—lucky me.