January 10, 2019. The day I quit. No more Truvada, no more little blue pills. Now, a few weeks later, I begin to understand why I did something none of us is supposed to do. Go off my prevention meds. We were going to put the whole world on Truvada, right? Yet, though many things were hard for me to give up when the time came, this one was easy. Not because it meant an end to the hassles with an insurance company that didn’t want to pay up, or the need to take it without fail each day, but because of something else.
I am a gay man now in his sixties, which means I am the demographic that got hit hard by the reality of premature mortality after years of sexual freedom. Sure, there were STDs in the 1970s, I had them, but a shot in the rear made them go away. You remember if you’re my age when things changed. When, after a youth spent exploring, something unanticipated surprised us at the end of it. In early-eighties New York, before I fled to the West Coast thinking it would be different there, friends were falling ill and dying either quickly or slowly. At first, we didn’t know what to do. Throw away the poppers, stop going to the baths, give up sex entirely? If Truvada had been invented then, who wouldn’t have gone on it? Who wouldn’t still be on it today? How many more of us would still be alive?
But it wasn’t available then, and once we figured out what safer sex might be, I and others who chose to set about to master it. The work was cerebral, a matter of will. A decision to pursue fewer hook-ups, or seek monogamy. Come on me, not in me. Dental dams? Gave ‘em a try, but it was easier to give up certain pleasures altogether. The real challenge was always condoms. Who in the world wanted to suit up? It took time, but finally, yes, I succeeded: I learned to eroticize condoms. The sound of a foil envelope being ripped open meant that something fun was soon to follow. It worked.
Related: What Every Young Person Should Know About The HIV/AIDS Stigma Gay Men Faced In The 80s
In hindsight, this might have been a kind of self-hypnosis. In fact, I am sure of it. I have used the same technique to stop other practices of self-harm, from too many cocktails to too few fruits and vegetables. I was a poster boy for safe-sex and safe-a-lot-of-things. It was hard work to stay uninfected in the 1980s and 1990s, and I don’t underestimate dumb luck in all of it, but eroticizing protection is, I am positive (because aren’t all?), what has kept me alive. But not entirely whole.
The not-whole part came clear when PrEP entered the scene. Oh, not for everyone: younger gay men embraced it, a way to do something always denied them from the start of their woke sexuality: fucking raw. Sure, the brochures told us to keep using rubbers in addition to the prescription. There were still nasty things out there. The ones we knew about and the ones, like HIV a million years ago from a young person’s point of view, might come out of nowhere to ambush us. Again.
Then this happened. Happily partnered, I nonetheless had an entirely innocent and safe evening with another gay man. The upshot? I wondered if such encounters might happen again. Should I prepare for that happenstance, however remote, of it not being so innocent or so safe, by “going on the pill”?
So I did.
Despite my realization that a whole slew of unhappy things could happen once fluids are shared, I found myself yearning to do all the risky things I had done in the old days. My self-hypnosis, which I thought was something hardwired into me, went flying out the window. I did things I never thought I would do. No one stopped to ask me if I wanted to use rubbers or gloves; we just did without, wordlessly. Please don’t tell me you’re different, though of course some of you may be: mounting evidence suggests you’re in the queer minority these days. Gonorrhea and syphilis are on the rise. We are returning to the sex lives we had before AIDS in this supposedly “post-AIDS age,” in part because the majority of gay men screwing around these days do not remember a time before a lethal virus, before the day when one or two deaths in your perilously near vicinity changed everything for you.
While on PrEP, my periodic, mandated tests came back negative. Negative for everything. Each time. I was lucky. But if they hadn’t, I would have had no one to blame but myself. Not that I have no reason to still be worried. For all I know, I or my partners may be infected with something the doctors haven’t identified because no one has come to them with symptoms yet. You know what? There is no test for everything because we do not know what everything is and we never will. For my generation, Truvada risks undoing the defenses the first years of the epidemic demanded we erect. And have kept us alive.
I had a decision to make. Keep going on PrEP? No. I had lived through too much terror and misery years ago. I was not going to go through that again, no matter how small the odds. This is the burden that a memory of that time has bequeathed the gay men of my generation: I do not trust any assurances given us.
The day of my first clinical appointment in the new year, I called in and said, no need. I’m going off Truvada. Thanks for the ride. I am not going to let the promise of near immunity from HIV tempt me to use my body the way I once had. I need to remove that temptation from my life—my sex life, to be specific, but with lessons for all the ways I now intend to live. And so, I ended the temptation by going off the blue pill, and its exaggerated promises of immunity from harm.
I know this is a decision that may make more sense for gay men my age than younger ones, because we have a different history: a history that makes me and my cohort suspicious of words like “undetectable,” because we know not everything is detectable. I am happier now. If presented with the opportunity for a good time in the future, there’ll be protection present. Latex, barrier protection: the best defense we still have for what lurks out there—both the things for which we have names and the things for which we do not yet.
John Whittier Treat is author of the novel The Rise and Fall of the Yellow House (Big Table Publishing, 2015).
i’m about 30 years younger than the author but i understand where he’s coming from. when i was little there was a neighbor on our street who had AIDS. he was skinny, he lesions on his face, all the classic (and terrifying) signs. at 5 years old, seeing someone dying of that disease was imprinted on my brain and i’ll never be able to forget that.
despite growing up in a small rural town that leaned republican, i actually got a very good sex ed in middle school and high school, with extensive instruction on STDs/STIs and how to correctly use condoms. it horrifies me to know that “abstinence only” sex ed — which isn’t sex ed at all — is happening in so many communities now. the idea that people in their 20s were never taught about HIV or taught how to use a condom is almost unimaginable to me but apparently thats the case for millions of those people.
im fine with anyones decision to use prep but it doesnt have any appeal for me because treatment resistant syphillis and gonorrhea scare the crap out of me and prep doesnt prevent those… so id still have to use condoms regardless
@HarryB at q-meet.us
Real true story. i am excited
“exaggerated promises of immunity from harm”
It’s one thing to be cautious but that’s just fear mongering. You could say the same thing about condoms for that matter.
Age have something to do with it too. Guys in their twenties f*ck like bunnies and guys in their sixties it’s the special occasion event which makes taking the blue pill way more burdensome.
Which blue pill for the older crowd? Truvada or Viagra? Both?
Agreed. The science is sound. The way the author wrote the sentence, he says the pill made the promise. That’s obviously just an artistic way of describing it. But I wonder who he thinks was exaggerating… the pill can’t talk, so were his doctors exaggerating, or the advertisements, or his friends? The author deserves some push back for such an irresponsible assertion. The pill is very effective.
It is not “fear mongering” to think that, just maybe, a drug that has had post-marketing study data for under a decade, that treats a virus that has been in continual mutation since it was discovered, might stop working or lead to other consequences. In this case, the consequences will be a population devastated yet again since so many have become convinced they never have to practice safer sex. As my poz roommate has said. “I find it funny that people are now willingly getting treated and getting side-effects for a disease they don’t have, and that I hate taking meds for, but whatever.”
Not for me — I WORK in pharma and I don’t buy it. You know what also was pushed as a panacea? Oxy. And about a hundred or so other drugs we didn’t find out about the consequences of until too late. Why anyone who is currently healthy would voluntary go on prescription meds is beyond me–but then again, I actually have to read the ISIs and PIs everyone else throws out.
Thanks for a bit of reason amidst madness.
Why anyone who is currently healthy would voluntary go on prescription meds
That’s exactly what millions of women do EVERY day!! I think you are LYING about being in pharma since you talk a bunch of BS, like anyone knows who you are. Prep is going thru the SAME thing that the pill went thru a long time ago. All the establishment men wanted to do was CONTROL women and THEIR choices and now the holier than thou gays want to control and shame and do the same thing to anyone who takes Prep. This even when they themselves pick and choose when and who to bareback with. How else do we still have new infections every year? Because PEOPLE ARE NOT CONSISTENTLY USING CONDOMS! Maybe you should STFU and mind your own business and not have sex with someone on Prep if you do not want to. Or use condoms, you have that choice.
If you work in Pharma, you should be more conscious of the actual science.
For instance, “undetectable” when discussing HIV means that a HIV positive man has a viral load less than 40. Starting in SF, there have been several studies of serodiscontant (one is positive, one is not) couples, all of studies show that Undectable = Untransmible. Google it if you don’t believe me.
Condoms didn’t work to prevent HIV transmission. That’s why the rate of seroconversions kept going up from 1985-1995. PrEP has almost a 99% prevention of HIV transmission rate. Please don’t confuse young gay men about those scientific facts. Of course PrEP doesn’t prevent STIs. If you actually work for Pharma, you should do everything to get them to do to develop new antibiotics to treat resistant strains of syphilis or gonorrhea.
As for the comment on kidney problems while on Truvada, that guy needs a new doctor! Every doctor should know that kidney problems are the MOST COMMON side effect of Truvada. The doc should have ordered kidney tests a month after starting Truvada.
I have been positive since at least 1981, when my doc told me that “whatever is going around,” I had been exposed to, because of the lymphatonopathy (diffuse swollen lymph nodes) and I am still alive and so disappointed the ignorance of HIV is still so wide-spread in the gay community.
I guess you are going to be one of those self-hating sex negative gays who will call anyone who takes an HIV vaccine a WHORE. Vaccines are never 100% either. Women voluntarily take a pill with very real side effects to prevent pregnancy so they can BAREBACK their brains out. Your mother many have taken the pill so she could BAREBACK too. What makes her any better than you? Oh I know, she only BAREBACKED with your daddy I’m sure.
Why do you hate the way that you have sex? It’s because you have been brainwashed into thinking that you are lesser than other people. You cannot deny that gays have been taught that they are nothing but TRASH. When will you wake up and break out of the self-loathing mindset?
I came of age in the ’90s and remember having the importance of practicing safer sex jammed down my throat before I’d even had my first sexual experience. It was annoying as hell then, but I’m grateful for it now.
Anyone who has even a basic understanding of how viruses work understands that something worse than HIV/AIDS (if that’s even possible) will likely come along that is resistant to PrEP, and goes on to decimate another generation of young men.
Okay, PrEP. And the side effects? Is anyone talking about those? Two friends are having terrible kidney trouble because of the medication. Is it worth it? Maybe. I don’t know. He doesn’t know. His doctor doesn’t seem to know. Remember that these medications have side effects that no one seems to be talking about.
All meds will have side effects for some people, perhaps this friend needs to stop taking them? And is this a witch doctor he goes to?
The side effects are easily measurable. All patients are required to get blood tests every 3 months. The tests include an HIV screening, of course, and they also test kidney function. Your friends should not have had “terrible” reactions in just 3 months. Sounds like they skipped their doctor appointments.
I agree that this attitude that PrEP makes you invincible is going to eventually come back to bite the gay community in the ass is a big way but also…Gloves?
Big Pharma is making, billions by making people buy pills even before they get the disease. It is a miracle of profit-making.
I actually dont take Truvada for 3 reasons. First is my insurance plan doesn’t cover it and I’m ineligible for their discount program. So sorry…I dont have an extra $1700 a month to take a pill. Second, I dont believe the long term side effects are seen yet. I have read stories of a lot of people with side effects and kidney issues. Third, I came of age during the late 80s/early 90s and sex scared me to death. So its not something I take lightly. I cant fathom someone not using a condom. Ever. I guess it all depends on what generation you were raised in. But I don’t believe enough emphasis is put on contracting regular old STDs which are now becoming almost incurable and drug-resistant. Sex ed today has the abstinence option which is absurd. The US had a very unhealthy view of sex too which only contributes to it.
Scare mongering again! Yes there is drug resistant STI’s but it is far from a epidemic. The first cases in the UK came from straight men coming back from SE Asia, not gays. And guess what? There is drug resistant infections all over not just among gays. And STI’s are not becoming incurable, another scare mongering self hating gay thing.
“Scare mongering again! Yes there is drug resistant STI’s but it is far from a epidemic.”
I remember the guys like you in the early days of the epidemic, fighting against the earliest safe sex recommendations.
I wish I could track them down and wag a finger at them for being so short-sighted. But almost all of them have been dead for decades.
Scare-mongering? If that’s what you want to call it. Several people raised red flags before the emergence of AIDS. They were largely ignored. Selma Dritz saw what was coming, and she took massive shit for shutting down the bathhouses in SF.
Voices like your shouted down those warnings. We cannot allow that to happen again.
No matter how outraged or dismissive you are. We were there once. Why would a rational person even take a chance we could be there again?
Truvada is 1700$ in the US? Tough.
In Germany Truvada is sold for 820 €. Patent protection for Truvada ran out on August 01 2017, and soon it was marketed for 600 €. Then a phamacist brokered a non-Profit deal with Hexal, a producer of generic drugs, making it available for 50€/28 pills. A second generic producer followed an sells its pills for 70€.
The test every 3 month are run by the non-profit “Aidshilfe”, costing 40 € for HIV, Syphilis, Gonorrhea and clamydia.
Well, in 2018 we got a new, very conservative, anti-abortion, anti-migration and openly gay secretary of health, who decided, that beginning in May, Prep and the testing will be covered by the mandatory government-regulated health insurance.
A little like the anti-vax…which is nonsense. I stopped taking PREP because I’m not having sex. When I think I might be in that situation again, I will consider starting it again. It’s nice to be an option.
anti-vaxxers are nuts and i’m not sure this is comparable to that. for me it’s definitely not. i have no problem with vaccines and if there was an HIV vaccine i would absolutely 100% get it
As a reminder, here is the CDC’s risk estimator tool: wwwn . cdc . gov / hivrisk / estimator . html
You also should know other factors increase the risks shown in this tool, such as having genital sores, bleeding gums, ejaculation on mucous membranes or sex in backrooms.
I’m 10 years younger than the author.
I never got to have the bacchanalia that his generation had. I came of age at the start of the crisis.
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