Register Monday | June 17 | 2019
Unprepared Art by Christian Fowlie.

Unprepared

Is PrEP, the drug that prevents HIV, bringing revolution or regression?

I went to a sex party in New York last winter. Like a rave, it had a secret location, only provided on the day of the party. I went alone and looked aimlessly on the wrong side of the street for a while until a group of guys on the other side of the street yelled, “Inferno? It’s down here,” pointing at a dark door. I said thanks, crossing the street, and then walked into the basement. The coat check was instead a clothes check: I put everything but my shoes and underwear into a numbered garbage bag. The beer was free, partly so that nobody had to deal with a wallet. 

The dark basement was divided up into sections—a dance floor, a maze-like area with semi-private cubicles and glory holes, and a bigger public area with vinyl-covered beds and slings. The basement walls were all exposed brick, with only dim ambient lighting to help people navigate. I grabbed a beer and wandered around, people-watching. The crowd was friendly, with no attitude. It was like a bar scene from Al Pacino’s 1980 classic Cruising, with a more mixed crowd. I had read a New York nightlife listing calling it “one of NYC’s biggest and most diverse queer sex parties, attracting hundreds of gay, bi, and trans men and women each month,” and it lived up to the hype. Its vibe was reminiscent of pre-AIDS gay clubs of the seventies, or how I can only imagine them. And now, like then, there was a lot of condomless sex.

But Inferno is also very much not a party from the seventies. It’s working to cope with the complex realities facing gay men today, and one in particular. With the advent of PrEP, the HIV prevention drug, condoms are no longer essential for many HIV-negative guys. But that doesn’t mean everyone wants to do away with them. The party encouraged an open, non-judgmental mood, making sure everyone’s choices were respected. Inferno also promotes HIV testing to its guests, helping them connect with free testing sites.

PrEP, which stands for “pre-exposure prophylaxis,” is unquestionably effective, with a success rate of over 90 percent when taken regularly. There's evidence it even prevents HIV transmission when taken within a certain window before and after a potentially risky sexual encounter. Approved by US health authorities in 2012, PrEP has gradually come to Canada, with Quebec, where I live, first adding it to the provincial drug plan even before Health Canada approved it in 2016. (Ontario and several other provinces have since followed suit.) 

Many were quick to call it a medical miracle; in 2014, the New York Times published an article every other week on the drug, even declaring that PrEP would mean a “sexual revolution.” The drug was also a coup for Gilead, the pharmaceutical company that makes Truvada, the brand name of the main drug used as PrEP. Gilead is now one of the top ten pharma giants in the world and has made billions from the pills, which cost roughly $1,000 for a thirty-day regime, while the new generics cost about $250 to $400.

This news all sounds good on the surface. But these changes have also come about so quickly, they can be jarring. I knew the man who organized Inferno was on PrEP, and I wondered how he made the party feel both familiar and freeing, encompassing the best of different eras. So I messaged him. PrEP is “a godsend,” he told me, “even though I don’t believe in god.” In this case, “god = activists, and a greedy pharmaceutical company.” He says he grew up with a tremendous sense of fear and shame about the idea that having sex could put him at risk for a then-deadly disease. Now, the “fundamental fear of life and death has been removed from the equation,” he says.

But he knew what I meant about this moment in time feeling jarring. “I think, sometimes,” he said, “I, and maybe some of my friends, feel like ‘Urgh… we’ve stopped having those pre-sex conversations.’” 

He's right. Taking the pill can mean more action and less talk. PrEP has brought a culture shock to the queer community, but is it the sexual revolution we’ve been looking for? I don’t have a romanticized view of what the AIDS crisis was like; it was horrific. Still, confronting HIV back then, when it was understood as a collective responsibility, forced many queers to learn to take care of each other. PrEP is emancipating some of us from the legacy of AIDS hysteria, but sometimes I think it’s also dividing us. 

In the course of history, thirty-odd years—the entire length of the HIV epidemic to date, in other words—is a blip, nearly nothing. But for many people, everyone of a certain generation, that epidemic is all they know. 

I have had HIV my entire adult life. I found out in the late nineties, when I was eighteen. It was about a year after the major treatment breakthrough, the introduction of antiretroviral medications, that began to curb the massive death rate. But still, my doctor told me I wouldn’t live past thirty, and public health nurses told me to refrain from sex altogether. The national news that year had a story about a man being criminally charged for not telling a sex partner that he was positive. 

I had grown up during the heyday of condom campaigns and was told many times that I should have known better; getting HIV was my fault for being reckless. Then, in 2008, something called the “Swiss Statement” came out, announcing to the world that people with HIV could get treatment to make the virus undetectable, meaning they would no longer transmit through condomless sex. I theoretically understood this news, but I didn’t act on it. I didn’t know how to. I had been told for years by medical experts, campaigns, nurses, the media and my peers that I was an infectious threat. 

For most of my life, I have not been interested in advances in HIV prevention. Public health campaigns always manage to make it sound like the lives of HIV-negative people matter more. People like me are framed as scary risks from which others must be protected, as helpless charity cases, or as the sole people responsible for ending the epidemic. It was hard witnessing an ever-changing onslaught of messages meant to scare people away from becoming like me. 

Many of my friends living with HIV had avoided sex altogether, and I mostly slept with people who were also positive. The shame around sex after a diagnosis—what we were all told was the worst thing that could happen to us—was a lot to handle, especially coupled with the social hysteria. Sometimes the cuts went deeper: one ex, who was HIV-neg, told me this was his reason for dumping me. I had mostly sworn off HIV-negative guys altogether; dealing with their own baggage on top of mine was a major downer. 

Of course, I worked to ensure I couldn’t transmit to others, as do all people who know they are HIV-positive (there are over sixty thousand of us in Canada, and between my own community and my work as a doctoral student at Concordia University researching HIV criminalization, I know many). But protecting my HIV-negative sex partners wasn’t just an individual moral decision. It was part of an ethos of queer collective care I have learned over the years, an approach that grew from the early days of the HIV response, when HIV prevention was conceptualized as a shared responsibility. This feeling of community led to milestones like the 1983 booklet “How to Have Sex in An Epidemic,” which helped invent the idea of safe sex for gay men as a way to promote mutual affection, sexual expression and joint responsibility. That was what I wanted for all of us—a feeling of trust and undividedness. 

Still, for me, it was a full five years after the Swiss Statement that I again decided to give an HIV-negative guy a chance. He was persistent and a bit younger; things had changed, and he had grown up with less hysteria. He wasn’t scared of HIV or of my body. He understood, in a way that even I hadn’t quite accepted, that I couldn’t transmit, and he was totally disinterested in condoms. 

Living with HIV is now a common human experience. There are as many people around the world living with HIV as there are residents of Canada. This spring, an HIV-positive man in Portugal will celebrate his hundredth birthday, and doctors say people's life expectancy is close to average when, like me, they have the privilege of being connected to treatment, housing and a decent income. For some, life with HIV has been radically transformed to a state of near-normalcy. 

But that doesn't mean all the underlying problems have just disappeared. Despite some recent progress, Canada is still one of the world’s worst countries when it comes to criminalizing people living with HIV—creating criminal repercussions for people if they don’t tell a sex partner they have the virus, in certain jurisdictions, even if medication has made them uninfectious. As a result, the only HIV-related bodily harm I’m likely to face is from the police or from people’s hatred. It has often seemed to me that the fear that has made HIV criminalized is the same fear underpinning HIV prevention campaigns. To those of us living with the virus, fear is the real problem, not HIV. 

Having HIV means living with a sort of cognitive dissonance—holding multiple contradictory ideas in one’s head at once. While I can’t stand the capitalist ethics of pharmaceutical companies, I must also take my once-a-day pill to stay alive. Yes, in initial trials, Truvada had been tested on female sex workers in sub-Saharan Africa, including some who had been displaced when foreign-owned oil drilling forced them from their land. Yes, it can feel counterintuitive to be advocating for a preventative pill for HIV-negative people when there are still over 10 million people globally living with the virus without access to anti-HIV drugs. Yes, that pill is now being primarily marketed to wealthy gay men in the Global North, including the settler-colonial state of Canada. It seems the epitome of globalized capitalism, patriarchy, white supremacy and medical apartheid wrapped up in one not-so-tiny capsule.

It's undeniable that the pill, in certain parts of the world, has the potential to radically reduce new infections. Canada could be one: gay and bisexual men (and other “men who have sex with men,” as the epidemiological buzz terminology goes) still represent 55.5 percent of all new HIV infections in this country. We make up approximately 2 to 3 percent of the population, but are 131 times more likely to get HIV than straight men. Surprisingly, while HIV infections have decreased in many countries, Canada’s rates are still on the rise; experts believe the new infections are primarily linked to people who don’t know they’re HIV-positive (and sometimes linked to transmissions that happen outside of sex). 

But let's not overstate how far we've come. For guys having sex with me, PrEP is, in a way, redundant. It is already impossible for HIV-positive people on treatment, like myself, to transmit to anyone. More than that, it’s basically all the same drug: PrEP is one of the same chemical compounds taken by people living with HIV, the same drugs that make us no longer infectious. PrEP wouldn't exist if HIV treatment hadn't already been made effective. This is something most people, including HIV-negative guys, don’t often seem to know. 

I’m forty now. Some have said that the PrEP era means we are all “HIV equal,” dispensing with the negative and positive. This so-called new era can be confounding, at least to me. Just a little over a decade ago, a man known as the “Berlin patient” was famously cured of HIV through an extremely expensive bone marrow transplant. The news travelled around the world, and while the procedure proved not to be viable for mass application, it was considered a triumph. The man is now HIV-negative, and in 2017, he announced he is on Truvada. In other words, now he is taking almost the same medication as when he was HIV-positive. The announcement hurt my brain. Is this the future? Is this scientific progress? Is this queer sexual liberation? 

A few years ago, a friend emailed me a link and a note: “Check this out!” It was a blog post. I immediately called him so we could read it to each other, both in shock from what it said. The blogger was reclaiming a “whore” identity, a “Truvada Whore,” because he believed people thought that PrEP encouraged promiscuity and that society was judging his choice to have sex without condoms. He went on and on about his sex life. “He thinks he experiences stigma,” laughed my friend, who works in HIV prevention. “Tell him to call me once he’s lost his job or housing or been sent to jail because of HIV.” 

PrEP was allowing HIV-negative gay men to explore new possibilities in their sex lives, and some white, cisgender HIV-neg guys suddenly had a space to unleash all their sexual entitlement, not to mention some narcissistic exhibitionism. This was still well before the PrEP floodgates had fully opened, and blogs like this were only starting to trickle out.

More was still to come. In the seven years since PrEP was launched on the American market, it has become impossible to avoid. The powder-blue Truvada pill has joined the ranks of mainstream pop culture iconography, so ubiquitous is it in queer male spaces. Gilead-funded NGOs across North America have launched social marketing campaigns. Convincing people to take medicine as a preventative drug when they are not yet sick is notoriously a challenge. But encouraging people to champion that drug by linking it to their own empowerment—that’s a next-level marketing feat. This has happened with PrEP to an extent not seen since the birth control pill. 

The astonishing production of PrEP-themed merch includes, but is not limited to, T-shirts, posters, key chains and tote bags. Unlike people with the virus who take anti-HIV medications, those on PrEP seem to flaunt their pills. I see them prominently placed in people’s apartments, posted on social media; in gay bars guys take their pills publicly, as if to say, “Look at me, I am taking care of my health.” On the ’gram in late December, artist and musician Casey Spooner posted a pic of a Truvada pill on top of a Bible, with the caption “NEW TESTAMENT.” 

That first blog post I saw was replicated over and over, shaping the idea of PrEP as a whole new identity. The homo blogosphere has been flooded with first-person narratives of the trials and tribulations of being a “Truvada Whore,” with such pieces as “Please Feel Free to Call me A Truvada Whore,” or “You Say ‘Whore’ Like it’s a Bad Thing.” 

Many of the writers of these posts call upon histories of queer sexual liberation—but those times were about demanding changes to oppressive social structures, such as anti-sodomy laws. The current movement is instead about demanding individual protection from people in their own communities. 

PrEP’s popularity goes beyond social media. Medical professionals have also championed the drug, with the World Health Organization now recommending that a large portion of sexually active gay men go on the drug full time. 

As one of my exes put it, “Either you have the AIDS, or you’re on the PrEP.” He is HIV-positive, rarely talks about HIV, and when he does, he only does so as a joke, enjoying a comical repurposing of the outdated term “AIDS,” as in “everyone has AIDS, AIDS, AIDS… we’ve got quilting to do,” from the comedy classic  Team  America: World Police. Still, he’s right: the idea of a sexually active HIV-negative gay man not on PrEP is increasingly considered impossible. 

The barrage of marketing and hype means there has been little room for conversation or dissent about what PrEP means, let alone the decision to take it. The drug has been framed as a polemic: either you are against it, meaning you are sex-negative, slut-shaming and against gay male liberation, or you aren’t. But I worry that zero-sum games have high stakes. 

Like most gays, I go through phases of using hookup apps: I delete them, use them, delete them, use them. The circle of gay hookup life continues. The last time I re-added an app called Scruff onto my phone, it was a Friday night and I was newly single. There are myriad apps tailored to different subsections of the gay world, but I tend to use Scruff because it usually draws diverse guys—different ages and body types. The app is set up as a grid of profiles organized by geolocation, first showing the people closest in proximity to you. I logged in, uploaded a carefully curated selfie (but curated to look relaxed and totally uncurated, obviously), and was then directed to check the usual boxes: biometric stats, interests and attraction preferences. 

Then I came across newly added profile options. One, called “safety practices,” included check boxes for “condoms,” “PrEP” or “treatment as prevention”—meaning you have HIV and are taking treatment rendering you uninfectious. Additionally, under the “I am into” section, I could now indicate if I was looking for someone else who had HIV, listing “poz,” and under the “I am” section, I could include “poz” as a self-identifier. While I appreciated the new options, they also kind of creeped me out. I’m old-school, wary of the consequences of technologically mediated sex and how information could be used in a future of omnipresent surveillance. Ultimately, I decided to avoid the new ways of publicly labelling myself. I filled in what I felt comfortable with and began scrolling through profiles.

I found a guy nearby who was hot, clicking on the embarrassing yet helpful “woof” dog-paw icon to let him know I was interested. A few minutes later he responded with the ubiquitous “hey.” We expressed mutual attraction and shared the usual introductory, inane, flirty small talk. The conversation moved to sex, and I asked what he was looking for. He responded, “Vers, open, mostly into bb,” meaning he is interested in topping and bottoming when it comes to anal sex, open-minded and into condomless sex. I responded, “Same, but I’m undetectable.” 

The chat ended there; he immediately blocked me. This response to a guy disclosing his HIV-positive status is a common one, and it still stings, but I just move on. The block is much better than the moralistic diatribe that some HIV-negative guys feel entitled to spew: “How dare you, trying to still have sex, you sick fuck!” was one of my favourites. I moved onto a few other options on the grid, deciding, in my next chat, to say that I’m undetectable as soon as possible to avoid wasting time.

Another guy initiated this time: “Hey, how goes?” I disclosed my status within the first few minutes. He responded, “It’s ok, I’m on PrEP.” The discussion then turned to logistics—as far as he was concerned, we no longer had to talk about risk. 

I’ve heard this from guys many times: that my viral undetectability is of no interest. They are on PrEP, so it doesn’t matter what’s going on with anyone else. One of my exes, who is also HIV-positive, often deals with this when hooking up with new people. “Before PrEP, as a poz person, I would have conversations with guys,” he told me over dinner. “We talk about ourselves and responsibility and HIV, build a human connection. It was a process, a way to get to know and be accountable to each other. Now they are like ‘I’m on PrEP, who cares, let’s fuck.’ It’s like choosing from a catalogue.” The moment to have a bonded connection over our shared relationship to HIV, negative or positive, is no longer on the table. For some of us who have lived with HIV for a long time, this can be refreshing, and for others, disconcerting. 

One problem is that basics about HIV or STI transmission are still rarely taught or understood. The rise of PrEP and people's disinterest in talking means that in some cases, I have to do the work of educating HIV-negative men about their own sexual health while I’m looking for action. This is a conversation that most guys don’t want to have, and they think PrEP means they no longer need to. I decide to pass on lecturing this guy tonight, and we arrange to meet up, me travelling to his place, a few blocks from mine. 

Ricky Varghese, a Toronto-based psychotherapist, believes that beyond its biomedical function, PrEP serves as a foil, revealing our collective fraught relationships with sex and sexuality as gay men. “I often see men who take PrEP with the idea that it will suddenly loosen them up, free them from their inhibitions, fears, anxieties,” says Varghese. “PrEP acts as some sort of elixir that will then make them more sexually confident or adventurous, feel comfortable with the sex they want or with their bodies.” Varghese isn’t saying we shouldn’t use PrEP, “but to consider it to be the be-all and end-all of the discussion regarding sex… might be somewhat short-sighted.”

Rahim Thawer found out about PrEP while working as a counsellor at a sexual health clinic in downtown Toronto back in 2011. Thawer, a social worker, therapist and community activist, is himself on the pill and says PrEP serves an important emancipatory function. But right now, he agrees, taking it is also considered a public obligation. If you become HIV-positive today, you might worry people would believe that “now it’s really your fault because the prevention technology exists.” It doesn’t feel so different from how I was shamed as a teenager in the era of condom campaigns, made to feel responsible for my own infection. It’s as though there is now only one correct way to be, as if sexual health were an individual consumer decision, like buying a TV or computer. 

My good friend Adrian Guta, a professor of social work at the University of Windsor, has, with his colleagues, been interviewing gay and bisexual guys about their decision-making around PrEP. Guta tells me he’s wary of being openly critical of PrEP because the Truvada Whore blogosphere, as I like to call it, might pounce. But he says he’s worried that PrEP may be further entrenching stigmas around sex and HIV, not removing them. 

 The interviews suggested that people had started seeing the world  in terms of “‘good’ and ‘bad’ classes of gay men,” he told me. In that kind of dichotomy, “there are the 'good sluts' on PrEP who are managing their health, and the 'bad sluts' who aren’t on PrEP.” But the men his team interviewed all had good reason for taking or not taking PrEP, he says. Many were worried about side effects or lacked access to insurance to cover the expensive price tag.

And the new normal of condomless sex is far from liberating for some, says Guta, especially if they don’t have access. “We heard from non-PrEP users who were feeling pressured to stop using condoms,” he says. Mike Smith of the AIDS Committee of Toronto interviewed many guys across Toronto for a community consultation. Smith says this sense of pressure to go condomless is often felt by men of colour, which is a problem, since those are the same guys who often have a harder time getting access to PrEP. 

I called my friend René Callahan-St John, who works at the Montreal harm reduction clinic CACTUS. He tells me he knows trans guys who want PrEP but have also had a hard time getting it. They can’t afford the insurance deductible and in some cases end up getting the drug from the black market. The median income for trans people is very low; in Ontario, for example, it’s $15,000 a year, according to one study. Trans people also have a long history of being mistreated by healthcare providers, so many trans guys avoid going to clinics altogether. For guys on the margins, PrEP is a luxury they don’t yet have access to, and PrEP just underlines long-existing problems of poverty, alienation and racism. 

In some places, work is being done to ensure equal access to the drug, but still, that brings back my sense of cognitive dissonance. It troubles me to see people throwing all their energy into PrEP access campaigns, as I doubt those same people are working simultaneously to remedy other, long-existing needs: those of HIV-positive migrants, prisoners, rural and homeless people. Many in these groups could desperately use advocacy to get equal access to life-saving treatment for a virus they already have. 

Condomless sex also brings up one of the main concerns about PrEP among hand-wringing mommy-knows-best public health professionals: a documented rise of other STIs, including gonorrhea, chlamydia and syphilis. Smith says that as a result of PrEP, queer guys now understand great sex to be condomless sex, and that for some it is worth getting an STI for great sex. The perceived level of risk associated with getting an STI (excluding HIV) is relatively low, Smith says. “Guys can easily manage a chlamydia infection with a heavy dose of antibiotics, and sexual health clinics are making it easier and faster to access STI treatment,” Smith tells me. “Continuing to push condoms in a fear-driven, sex-shaming manner will only drive up STI rates. We need to… encourage each other to test more frequently and get treated.” As one friend says, “Another day, another course of antibiotics.”

But is this so new? In the seventies, gay men were known to take antibiotics before and after going to sex parties as a guerrilla preventative measure for syphilis, gonorrhea and chlamydia, just like the organizer of Inferno does today. The practice isn’t yet officially recommended by healthcare providers; it’s a strategy men have adopted to manage their health on their own terms. With the rise of PrEP, we’re seeing a resurgence of these past community-initiated practices. I wish every sea change in our health could be like this—weighed and embraced by us as a group, rather than pushed from the outside. 

Anti-HIV medication has had a tremendous impact on my physical and also mental health. No longer being able to transmit the virus has given me a sense of freedom and a moment to breathe. But enabling greater sexual freedom is not the same thing as addressing stigma and fear. Smith goes further: “Guys who experience significant anxiety of getting HIV will use PrEP to further divide themselves from folks living with HIV, regardless of their viral load.” 

AIDS philosopher Ted Kerr takes this argument to its logical conclusion, calling himself a “PrEP refusenik” partially because of the dividing lines he sees the drug reinforcing. He is HIV-negative and not on PrEP. “I think one reason I don’t take PrEP is that I am not afraid of HIV,” he tells me. “I don’t like it when white gay men in resource-rich situations take PrEP out of fear… I think instead of taking PrEP they should work on their fear.” 

I think he’s right. PrEP has become a dual-purpose drug; its second purpose is to manage HIV anxiety among gay men. My roommate is HIV-negative, sexually active, not on PrEP and has never had an STI. I often call him an enigma, the last unicorn. “PrEP is as much of a mental health drug as Tylenol is,” he says. Surely every drug is partly a placebo, after all. 

I spent New Year’s Eve in New York City with a lover of mine, and early in the morning, on a packed train from Brooklyn to Penn Station, I talked to him about how much I’ve been thinking about fear. “What would it mean if we started taking the fear of gay men seriously?” he asked. “How are we to make sense of the history of AIDS and death when we have not had space to ever do that?”

I agree—fear is a rational response to the traumatic legacy of AIDS, but it’s still disconnected from the realities of HIV today. My friend continued thinking out loud: the pill isn’t enough to help us address the root causes of our fear, he said, but what else do we have access to? 

The collective trauma of the HIV epidemic has been passed down through generations, but we rarely contend with it as a community. There has not been room for healing; that’s not how the world is organized. How do we grapple with the past grief of a group that was largely ignored and marginalized? People died while everyone else continued to go about their business. The grief and deaths of thousands of gay men were not taken seriously then, so how can the grief and fears of subsequent generations be taken seriously now? 

I think of the shared moments our communities have established, like annual AIDS vigils—times to come together and mourn. In the past, these events have been helpful for me in working through this history. But one evening a year can’t fix it. The idea of a silver bullet continues to persist in responses to HIV because it avoids the messy complexities of rebuilding broken parts of society. Taking a pill might be soothing, but in the end, we can’t avoid facing the past. However painful, it's part of us, part of what made our community what it is, for better and worse. 

Change, though, is often incremental. I think back to when that lover of mine, the one who helped me talk things through on the train, first told me he was on PrEP. One night, he had called me out of the blue. I was on my way to a friend’s place in Montreal’s gay village. It was a warm night and I sat on the sidewalk of Ste. Catherine Street, which had been made into a pedestrian-only main drag, and I looked up at the strings of coloured balls that hang overhead each summer. He was about to visit me for the first time, and told me he was anxious about the trip and anxious about sex. He had never slept with a positive guy—at least one he knew was positive. Our first real date was happening in a high-stakes, long-distance scenario. He told me he was on PrEP. 

I wondered to myself if I was setting myself up for another negative guy letting me down. His general anxiety about the trip was warranted; I was anxious too. But his HIV worries weren’t. I felt overwhelmed by the usual fatigue that comes with being asked to manage the HIV panics of negative guys. I was concerned that through taking PrEP he was buying into an individualistic way of thinking—a way of thinking that regards my body as a problem, when it isn’t. 

I realized that wasn’t the case with him—he did understand the critiques of PrEP. And yet he still feels like it is right for him at this time in his life. Perhaps the way forward is to throw away all the meanings ascribed to PrEP, to people who choose to use it and to those who choose not to. I simply told him I thought his worries about HIV were unfounded, which he knew. I tried to listen and understand instead of react. He was being honest about his dread and was naming his anxiety in order to move beyond it, not entrench himself. It was a way to become closer. 

Ultimately, as I sat on the curb and it got late, we had a good talk: I overcame my initial reactions, and he was less worried. When he visited, we had great sex, partially because of the closeness we’d established in that talk. In the end, it was a moment of connection that can so easily be lost.