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Jake Sobo: My life on PrEP—4 years later

, by San Francisco AIDS Foundation

PGNerd_JPEGWe couldn’t be more excited to re-connect with one of our legendary contributors, Jake Sobo, for this feature on BETA. Back in 2012, Sobo was one of the first—if not the first—gay man to write openly about his experience taking PrEP for HIV prevention in a series titled “My Life on PrEP” published by Positive Frontiers. For the next three years, Sobo continued to write about his journey on PrEP, and to address other gay men’s sexual health issues, on BETA. He quickly became one of BETA’s most read and controversial authors—sparking debates online and off. We credit Sobo with bringing an authentic, real-life perspective to early PrEP use—and know his articles have amused, educated, and empowered thousands of readers over the years.

We recently caught up with Jake to get an update on his life, hear his thoughts on the future of PrEP, and find out what he thinks about rising rates of sexually transmitted infections among gay men. Please enjoy the following article, and re-visit your other favorite Jake Sobo articles here on BETA.

BETA: It’s been over a year since we’ve last heard from you on BETA. Please fill us in—how are you, and are you still taking PrEP?

I’ve been on PrEP now for four years. It was actually my four year PrEP anniversary last month! And I am in a relationship with an HIV-positive man, and we’re engaged to be married in 2018. So that’s exciting! We’re in a very happy and open relationship, so I continue to take PrEP – mostly for encounters outside of the relationship.

I think many people wonder how people will go on and off of PrEP over time. Has your PrEP use over those four years been continuous?

Even though I have dips in my sexual life, I always hope to be sexually active in the very near future (laughs). So although I may go two weeks or even a month without having a sexual encounter where I would need to be concerned about HIV, I can’t predict that. When people ask me if I ever plan to stop taking PrEP, I always joke that I hope to be at risk of HIV for many more years to come. I haven’t reached a point in my life yet where I can confidently say, “Oh, the next month I’m going to be fine.” I think Bob Grant’s “seasons of risk” metaphor is a useful way to think about it— in my case, I guess my season always happens to be summer.

What, if anything, has changed about PrEP since you started taking it in 2012?

I think what’s changed has been the landscape. In 2012 when I started PrEP, nobody was talking about it. Most of the discussions were very critical or skeptical, and there weren’t a lot of people talking about their own individual experiences. Now, you can log onto the “PrEP Facts” Facebook group and see thousands of people – mostly men – all over the country talking about where can they get a provider, or what they should do if they miss a dose. All the kinds of questions I was dealing with through my column in 2012 are now the fodder for these intense and regular online discussions in that wonderful forum. So the resources have changed, dramatically, in terms of what’s available for people who are interested in or are on PrEP.

What are your thoughts on the long-term injectable form of PrEP now being tested? Is that something you might be interested in taking, if it were to be approved?

I think many people I know who are active in the PrEP community are all waiting with baited breath to hear the results of those trials. I have no problem taking a daily pill, but I know that for some people it’s a challenge. The reality is, it might be nice to go in once every three or four months, or even once a month, to get an injection instead of taking a pill every day. The more options, the better.

Truvada is so overwhelmingly effective—for me to switch over, I’d have to know about how effective the injected medication is. What if the research suggests it’s 3% less effective than Truvada? Or 10%?

What’s exciting about Truvada is that we’re going to be facing the expiration of the patent. After that, the price is going to drop precipitously, which is exciting, because Truvada is not cheap. I think that’s the number one barrier for—not necessarily people—but for governments and big payers to get on board in promoting this strategy. I’m excited for PrEP to be cheap, and something would have to be really great about the injectable to make me think that that is a better alternative than a cheaper version of Truvada.

Rising in sexually transmitted infections and declining condom use always come up as issues related to PrEP. Care to offer your thoughts on condom use with PrEP, and sexually transmitted infections in the gay community? Is there cause for concern?

I exist in a world where I have contracted sexually transmitted infections and I’ve talked about that when I was writing as Jake Sobo for Positive Frontiers – that I contracted syphilis pretty soon after starting PrEP. I wasn’t really using condoms before I started PrEP, and I wasn’t using them after. Having said that, the kinds of ways I was searching for sex, and the networks I was tapping into, had changed. Just going out there and saying, “I want to have sex without condoms,” rather than just hoping to find it, changes who is willing to have sex with you, and sort of enters you into a different league of players.

On the one hand, as a responsible and thoughtful person in the world, you don’t want to be glib about the reality that there are sexually transmitted infections besides HIV out there, and the rates seem to be increasing. (Although, it could be because more people are going in for testing, and there’s some debate about that.) And it also appears that there may be more antibiotic strains of sexually transmitted infections on the horizon.

On the other hand, I’m a gay man in America who has lived through his fair share of scare campaigns from public health and medicine – like about superinfection and dual infection. We were told to be terrified of these rare outcomes in the hopes we would shape up. In the end, we discovered these were far less serious of a risk than we had been lead to believe.

So I think as a gay man living in this world, it’s hard to parse all of these things and make sense of it.

The reality for me, and for many of my friends who are gay and on PrEP or not on PrEP, is that they get syphilis, or gonorrhea, or chlamydia, and nothing changes about their life. They go in, they get a shot in the butt. It kind of hurts. And then they’re back on their feet. It’s a risk they’re willing to take.

Damon Jacobs, the founder of the PrEP Facts Facebook page, and I have talked about this. And I’d just echo his sentiments, which have been, “Oh well. That happened. Time to move on.” It’s a blip on the radar, at best. So that’s one lived experience. NBD. But, at the same time, as someone who speaks to large numbers of people, I want to make sure, that as gay men collectively, we take it seriously. In a sense, there is a certain cost—and I don’t mean economic—but in terms of the health of the community.

What else do we need to get the word out about these days?

I think what is most concerning is the fact that the vast majority of PrEP prescriptions are going to white patients. I would presume that a lot of those are for white gay men. Yet we know, from the CDC’s most recent surveillance figures, that black men who have sex with men are the highest incidence risk group today. There really needs to be an entire social movement dedicated to re-shaping that reality. Because if we want PrEP to actually do anything, to turn the tide against HIV, that trend cannot continue. Fortunately, we’re starting to see some discussions around that. Many people are interested, and are attuned to that fact, but tried and true models on how to change that are few and far between.

What is most exciting about PrEP, and treatment as prevention, is that I think we’re tearing down walls between HIV-positive and HIV-negative men in the community. I don’t know if the story has really been told, about the power of PrEP to fight stigma but also build a community that’s not divided in the same way that it once was. You see many more guys online saying they’re poz-friendly. You see more guys being open about being undetectable.

These things are happening at the same time, and they’re related to each other. It’s exciting for the community to come together across the sero divide. I speak as someone who’s soon to be married to an HIV-positive man. And while PrEP didn’t necessarily enable that, in some ways it has definitely made it easier. I think that’s true for a lot of guys.

It’s easier than ever to stop HIV in its tracks. And so that’s a very exciting time. I guess for public health, it’s exciting. We have almost bullet-proof tools, if they can be implemented – and that’s the real ball game today.

Do your friends—or other people—know you’re Jake Sobo?

Everybody knows. It is like the worst kept secret in the world. I don’t really try to keep it secret, except I try to keep my real name and Jake Sobo’s name separate in online forums where it could be searchable. As long as I’m a servant of the public state, that will probably continue to be the case. My friends know about it, some colleagues know about it, and I have talked about it openly at conferences before.

I have enjoyed being Jake Sobo—it has been fun. And I’ll keep his name in my back pocket if I do have something more to say. But right now, it’s all being said. There are really so many people contributing to the conversation, and there’s so much momentum behind it.

Jake Sobo is a pen name used for anonymity. Jake has worked in the world of HIV prevention for nearly a decade. He previously published a 19-part series documenting his experiences on pre-exposure prophylaxis (PrEP), “My Life on PrEP,” for Positive Frontiersmagazine, which was picked up by Manhunt, translated into French, and widely read in the HIV prevention world. He has spent the better part of his adult life having as much sex as possible while trying to avoid contracting HIV.

Comments

3 Responses to Jake Sobo: My life on PrEP—4 years later

  1. wjf says:

    I am absolutely shocked and floored at the cavalier attitude taken by Jake Sobo’s attitude and mind set towards the transmission of STI’S. And he says its not big deal, deal with it and move on. This is alarming and shocking that he would take this kind of stance on this issue. If he is someone who is looked up too for his experience and such, he should be talking about the gay men who pass these sti’s on to other guys. He made no mention of this. Well I am sorry but I take great issue with his attitude towards this issue. and Jake Sobo it is a fucking big deal. And shame on you for not standing up more while you have a platform to come down on those gay men who knowingly pass on sti’s to other men. All because they just want to have sex and damn with anyone else. I do not think Jake Sobo should be discussing these issues with his cavalier attitude towardsd them. Shameful

  2. BCC says:

    I know that some don’t like to hear it, but having condomless sex is a choice that an adult is entitled to make. Taking PrEP, and using that as a risk management tool, makes that person a responsible adult. I acknowledge that there are STI’s out there that PrEP doesn’t protect against, but fortunately most of them are treatable. This is partially why it is important to have follow up appoints every three months that have complete STI panels. It’s also important for a person to get tested and receive treatment if they suspect they are having a problem.

    I suspect that if everybody were to suddenly become super responsible, get regular STI screenings, and immediately seek treatment when they think they might have a problem (and not have sex until they are cleared), the reservoir of STI’s in the community would dramatically shrink. We just have to fight to get more people tested, and more people treated. It’s the only way forward.

    I think the real long term concern should be antibiotic resistance. Now that PrEP has become an effective tool to manage the risk of contracting HIV, and there are many different meds to manage HIV infections, I can see the day when some of the bacterial STI’s become untreatable.

  3. Ben Ryan says:

    In fact, there are huge financial costs associated with the rising STI epidemic in the United States. The CDC estimates the burden is $16 billion annually.

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