Truvada: It's Time To Take the Fucking Pill
This month, Tim Murphy wrote in New York magazine, "This summer—on social media, on Fire Island, at the Christopher Street pier, and in certain cohorts around the country—what many gay men are talking about among themselves is Truvada." That's been my experience too, that the debate over using the drug as pre-exposure prophylaxis (PrEP) against HIV has only intensified during the first half of this year.
I've witnessed more frank conversations about gay men's sex and sexuality in the past few months than I have ever before in my life. These exchanges aren't always informed or eloquent, and they aren't always without the cloud of shame that has tended to hang over any discussion about gay men's sexuality since before the AIDS epidemic. But they are, by and large, marked by honesty.
Earlier this year, I wrote that I'd decided that that Truvada wasn't for me. In the interest of honesty, I'm amending that just-linked piece to say that I thought again. I'm back on Truvada.
I'm about seven weeks into my second round now, and I'm experiencing none of the symptoms that I'd associated with the drug the first time around. What I thought was the most detrimental, incapacitating side effect when I took Truvada for the first time last year—a string of migraines so severe that they had me throwing up from the pain alone—was almost certainly not a result of the Truvada at all. Discovering that, and some advice from valued sources, is what brought me back.
I'd discontinued Truvada immediately, the day of the first eye-popping migraine. But the real cause of my misery took months to discover, during which time it had faded on its own—leading me to attribute my recovery to having stopped taking the drug. I was all mixed up. At the onset of the migraines, my primary care physician referred me to a neurologist, who referred me to an infectious disease specialist, who eventually told me I had suffered from rickettsia, a primarily tick-borne bacterial infection. My symptoms started at the end of November, which is a strange time to be bitten by a tick, but whatever. This particular bug had just happened to bite me while I was taking Truvada.
"Now that we know what you had, you can go on Truvada again," my infectious disease specialist told me with the dreamy resolve someone employs when she says, "And they all lived happily ever after."
"I would rather not, you know, just in case," I told her. I was scared of ever experiencing one of those headaches again. I still am.
Earlier this year, when Larry Kramer told the New York Times that when you take Truvada, you are, "taking a drug that is poison to you, and it has lessened your energy to fight, to get involved, to do anything," I related to those words. I had felt what he was describing, it just wasn't a result of the Truvada.
Still, just the idea that it could have been Truvada made retaking the drug daunting. It was the way I felt about tequila after drinking myself sick one night in college. For years, the smell had made my throat close. Now the thought of Truvada made my mind close.
Like my doctor, my father encouraged me to reconsider. He's a pharmacist, who ingrained in me an implicit trust in medication. He called Truvada a "lifesaver." Shame about that aftertaste, though, I thought.
I took a few months to let sense sink in. In that time, I found myself once again single, once again staring down a summer of who-knows-how-much indulgence, and I thought, fuck it. It's worth getting over myself to protect myself. Migraines, in my experience, were temporary. HIV is forever.
My second round with Truvada has been much better—even the side effects I suffered that are typically associated with Truvada, like muscle soreness and fatigue, were barely noticeable this time. Now that I'm in the seventh week, they have passed entirely.
I felt self-conscious about sharing this information. I've known for a while now that the last story I wrote was incomplete, but it felt self-indulgent to write an update on what's currently coursing through system.
But then I had lunch with a friend who is HIV positive. Like many HIV positive guys I've talked to, he advocates PrEP with something approaching fanaticism. "I read what you wrote about the side effects," he said, "and I thought, 'Mary, don't tell them that!'"
So here's my correction:
The past seven weeks have been great and they've been enlightening. Instead of the mind-numbing effects that Larry Kramer warned of, I've been stimulated by the conversation that taking Truvada fosters. It's an ongoing education. In my experience, in fact, Truvada's greatest side effect is thinking. You need not take it to experience this particular side effect—it's cultural.
I learned that a friend of mine suffered pancreatitis as a result of his Truvada use, and had to go off it. Fair enough. Beware, everyone—that's a side effect you don't often hear about. Another friend, as a result of me sharing my experience (and the fact that I pay nothing, not even a co-pay, to be on Truvada), is now taking it.
I schooled a medical student about it on Grindr:
"Why are you on Truvada? Is it because you like to bareback?" a buddy of mine asked in bed one morning. I explained to him that I generally don't, but I do it on occasion. The overwhelming majority of my casual encounters have included condoms, and they still do. I'm living proof of the recently released data from the iPrEx OLE study that found no sign of increased behavioral risks amongst PrEP users.
But this was someone that I felt particularly close to, and our conversation about my preferences and use of Truvada had only made me feel closer. Eventually I did have condomless sex with him. He went on PEP—post-exposure prophylaxis (the 30-mornings-after pills)—the next day. He'd had HIV scares in the past, and was particularly sensitive about the virus after it affected a relationship of his. He said he trusted me, but his behavior suggested he trusted his gut more.
Good boy, I thought. If the Michael Johnson/Tiger Mandingo story taught us anything, it's that you have to take responsibility for your own sexual health. Some people don't know their status, and those who don't know are the most contagious, since they aren't being treated. Or, even worse, some people lie about their statuses because of the shame that comes from HIV stigmatization (via criminalization and social shaming) or because their dick is hard and they want someone to put it in.
I didn't take offense at this guy's apparent mistrust of my word; I admired him for using resources to ensure his life remains under his control. That's a huge turn-on.
(As for those positive guys who are treated and undetectable, on the other hand, evidence is mounting that they are virtually non-contagious—a recent PARTNER study of 767 serodiscordant couples whose positive member is on antiretroviral therapy found zero instances of HIV transmission. This, too, compels me to retract my former way of thinking.)
These conversations—and I feel like I have one every time I find myself in a different group of gay guys—are not without frustrations. At the communal tables outside the Canteen in the Fire Island Pines a few weeks ago, a guy at the table next to the one my group was sitting asked loudly if anyone had some Truvada. "I want to chop it up and snort it," he said. I said I did.
He asked me about my experience. "Do you have diarrhea? That's the one thing I couldn't deal with." I don't, I told him. It's fine. When I told him about the fatigue and muscle soreness, one of his tablemates attempted to cut me off. "No, fatigue is not a side effect, he's lying," he said, obnoxiously, like I was just there to pull everyone's leg instead of their dicks. It was Fire Island for Chrissake. Later, while watching us bring out Coronas from the Canteen, that same guy announced he was giving blowjobs for beers. He had no takers.
The mention of snorting Truvada was an apparent reference to a remark AIDS Healthcare Foundation president Michael Weinstein gave to the AP earlier this year, dismissing Truvada: "Let's be honest: It's a party drug."
This a nonsense soundbite. The only "high" that PrEP delivers is relief from the anxiety that has shared a bed with gay sex for the last three decades. Coke, molly, meth, weed, alcohol, etc.—these help you escape reality, or at best enhance it. Truvada underlines reality. The drug consistently reminds you—when you take it, when you discuss it—of the potentially life-altering consequences of your behavior and what you can do to minimize them.
But stink travels. A friend of mine recently had a maddening text conversation in which an HIV negative friend of his voiced unease about committing to the positive but undetectable guy he's sleeping with. Like the vast majority of us, this is a person who prefers to forgo condoms when in a monogamous arrangement (or something like it).
My friend told him to go on PrEP, and the guy said he wouldn't, because "that's essentially just a party drug." Sigh. The reach of Weinstein's comment, which proliferated partly by those who loudly protested it (via blog posts, etc.), is astounding. It reminds me of the spread of David Duran's "Truvada whore." Duran coined the slur in a 2012 Huffington Post essay "Truvada Whores?"—a screed against "irresponsible" and "stupid" barebackers, who supposedly use the drug as "just an excuse to do what the want to do"—and it is now commonplace.
Duran's piece has only 63 Facebook shares and 42 Twitter mentions, per information embedded in the post; nonetheless, the "Truvada Whore" concept is mentioned in virtually every New York Times piece on the drug. Users wear it on T-shirts in a cheeky bid to reclaim the insult. Duran has since renounced his position, but the PrEP discussion remains infected with his epithet.
In that initial piece, Duran wrote, "Gay youth are not as afraid of HIV as many of us were in the past. That's a good thing. HIV is not a death sentence anymore, and the stigma surrounding HIV has declined, as it should."
Truvada itself continues to diminish that stigma, though, by giving negative men a taste of the HIV experience without the HIV. If you are on Truvada, you're medicating yourself (hopefully) every day, like someone with HIV. You're being closely monitored by your doctor with tests every three months to make sure you're negative and that your body is functioning properly, like someone with HIV. The cultural divide between the positive and the negative erodes, as it should. HIV is everyone's issue, but this is especially so for members of groups that are particularly at-risk.
To understand the extent of the relief that Truvada affords, consider this: For the first time since the dawn of AIDS, a sexually active guy can say, "I'm negative," with a great deal of certainty. It's probably not quite the 99 percent certainty that is often bandied about, as Josh Barro's recent New York Times piece on Truvada's efficacy illustrated, but it's high—certainly upwards of 90 percent. Because it takes about six weeks for the virus to show up, even a recent test that reads "negative" could still be wrong, if a guy was recently exposed. But that possibility is less likely than it's ever been.
When I think about the potential of antiretroviral drugs, I think of it in the practically utopian way that Andrew Sullivan spelled out earlier this year:
Here's why it is now perhaps possible in ways that have never existed before. If all HIV-negative gay men are on Truvada, they cannot get infected with the virus. And if all HIV-positive gay men are on retrovirals, then they cannot effectively transmit the virus. Bingo! Epidemiologically, HIV is facing extinction. But is it true that those of us on anti-retrovirals with undetectable levels of virus in our blood and semen cannot infect others? Well, we just got pretty amazing news on that front. A two-year PARTNER study – with more than a thousand sero-different couples, gay and straight – found that no-one was infected with HIV...
The bottom line: if we can get a critical mass of gay men on either Truvada or retrovirals, we could soon reach a tipping point in which this virus could be wiped out in a generation.
I don't think there is anything to argue with there. In my first piece on Truvada, I said that I thought most sexually active gay men should at least consider going on it. That was not strong enough: All sexually active gay men who are negative should go on it, at least those who are in the highly populated gray area that I find myself in—guys who either have casual condomless sex from time to time or who are "always safe" but still burdened by the fear of HIV.
If you know that you don't need Truvada, I trust your judgment. If there's a shred of uncertainty, just take the fucking pill.
I try to be as nonjudgmental as possible when it comes to the behavior of other gay men (though I cannot refrain from judging those who judge). We are all in different places in life; we all enjoy different things. That variety is, in fact, what makes gay culture so vibrant. The choices at the disposal of those who are privileged enough to live in areas where gay is OK and where same-sex marriage is legal—these are part what make being gay so wonderful. But if you cannot deal with taking a single pill every day, you need to get a grip and reevaluate your life. After you do that, then just take the fucking pill.
[Image by Jim Cooke]