[dropcap]I[/dropcap]t happened on Fourth of July weekend in Philadelphia. Gay people from all over the world flocked to the City of Brotherly Love to celebrate the fiftieth anniversary of our movement and our marriage equality victory. After all the festivities, I went home and did something I never thought I would do. I took my first dose of Truvada for PrEP. Having worked for this magazine for seven years and in HIV healthcare for two, I’ve been aware of PrEP since the clinical trials. I just thought of it as a pill for young gay men who were engaging in high-risk behavior. That wasn’t me. Now I realize PrEP may be a viable option for anyone. Once I started taking the pill, I wanted to connect with other gay men on Truvada as I entered this new chapter in my life. Naturally, this turn of events inspired me to write this article.
“We’re seeing a landslide of interest in PrEP,” says Helen Koenig, MD, Medical Director of Philadelphia
FIGHT’s PrEP Progam, which initially targeted young MSM of color but is now expanding its outreach efforts to include everyone. Koenig, who is also a physician at FIGHT’s Jonathan Lax HIV Treatment Center, adds, “Anytime one of our HIV-positive patients tells us that their partner is negative, we talk to them about PrEP. For a lot of people, PrEP is a really great way to talk about their status because they feel like they have something to offer their partner. Now they can say, ‘I’m HIV-positive, I really care about you, and there’s this thing called PrEP.’” She also points out that more people over thirty-five are coming to FIGHT asking about PrEP. “People who are older have a better sense in general of their own risk. They have their life together more. They are likely to have a job, be educated, and are more likely to be adherent to the PrEP regimen.”
Andrew Goodman, MD, Assistant Medical Director at Philadelphia’s Mazzoni LGBT Health Center, says most of the new PrEP prescriptions he writes are for patients specifically requesting it—and many of these guys are over forty. “Most of my starts are coming to me for their first appointment, after asking their regular provider who didn’t know anything about PrEP,” he explains. “A lot of gay men are saying they’ve talked with friends about it, or they saw something on-line about PrEP. It’s a part of our culture now.”
And this cultural shift includes a proliferation of PrEP websites, blogs and social media pages, which is where I began my research. I was seeking information and support, and what I discovered was a movement. I found a Facebook group called “PrEP Facts: Rethinking HIV Prevention and Sex,” with 7,500 members! I put up a post there that I was looking for people to share their stories. Within about an hour, eight men responded to my post. Here is some background on the men who participated, along with a snapshot of their PrEP experiences.
Damon L. Jacobs, 44, Brooklyn, NY
Relationship status: Single
How long on PrEP? Four years
Kevan Walsh, 51, Melbourne, Australia
Relationship Status: Partnered
How long on PrEP? Three weeks
Rich Reese, 43, Fort Plain, NY
Relationship Status: Single
How long on PrEP? Six months
Kurt Douglass, 52, Morrisville, PA
Relationship Status: Single
How long on PrEP? Two months
Jody Wheeler, 46, Los Angeles, CA
Relationship status: Single
How long on PrEP? One year
Alan Turner, 58, Winnipeg, Canada
Relationship Status: It’s complicated
How long on PrEP? Thirteen months
Roger Klorese, 59, Seattle, WA
Relationship Status: Married
How long on PrEP? Three years
Philip Tan, 40, Brooklyn, NY
Relationship status: Single
How long on PrEP? Eleven months
What made you decide to go on PrEP?
Kurt: I participated in clinical research for an HIV vaccine and more recently the injectable PrEP. My
experience through both clinical studies gave me this sense of “super power” (even though I was fully aware that I could be receiving a placebo). Today, I find the use of PrEP one more added advantage to making safe sex safer.
Roger: My husband is HIV-positive, and he was when we met. We had some increasing reticence about the risk of sex, even with condoms. In addition, we are open, in sex both inside and outside the relationship.
Rich: I thought about going on PrEP because more guys I was meeting were positive. I felt it was not a question of if I would convert, but when. I felt sooner or later luck would run out.
Damon: After the breakup of a long-term relationship, I was getting back into the dating/cruising world. For the first time in my life, I was no longer insisting my partners use condoms to top me. The sensational and wonderful experiences were accompanied by such fear and terror. All sexual encounters had been accompanied with the nagging thought, “Is this going to be the time I have to pay for it?” I was tired of living in fear of HIV. PrEP gave me an alternative to getting HIV while allowing me to have the kind of pleasure I wanted to have.
Philip: I was having unprotected anal sex often enough (once every two months) that I’d have to get an HIV test. As you can imagine, that got very inconvenient. I thought, “If I seroconvert in the age of PrEP, I would never be able to forgive myself.” My gay doctor was hesitant to put me on it, even asking me, “What if you have side effects in twenty years?” I asked him back, “What if I seroconvert in twenty years?” He finally put me on PrEP.
Has being on PrEP changed your life?
Roger: I feel the burden of loss and fear lifted. I can honor and miss those dear people I’ve lost without feeling that I would inevitably join them or that sex was intrinsically dangerous.
Rich: I am much more educated about HIV now. I find myself talking to everyone about PrEP and
educating them on what it’s all about so they know this exists as an option.
Damon: Quite unexpectedly, PrEP drastically changed my life. I always used to rely on someone else wearing a condom and making sure it didn’t break or fall off in order to stay HIV negative. With PrEP, I am fully in control of my HIV status for the first time in my adult life. That sense of control over my destiny then gave me the agency to start writing about PrEP, talking to media about PrEP, and starting an education group about PrEP on Facebook (PrEP Facts).
Jody: Both my emotional and my sex life have gotten much better. I’m enjoying sex a hell of a lot more and am no longer afraid of HIV. What’s more, I’m getting seen by a doctor far more often (four times a year), which helps keep me healthy in many other ways.
Philip: I don’t ever use condoms anymore, plus I do not serosort my partners. I find myself chatting with and being more open to poz guys than I was in the past.
How about your sex life?
Kevan: It’s early on but I feel that I will be able to “let go” and enjoy the moment more with PrEP.
Damon: PrEP has liberated my sexual expression in a way that allows me to focus on pleasure, fun, connection, and intimacy with multiple partners.
Alan: Before PrEP one of my main strategies for remaining HIV-negative was to be the top for all condomless fucking. That has now changed and this old confirmed top has become much more versatile.
Rich: I no longer have anxiety about HIV. I am much more relaxed and have enjoyed sex more than ever in my lifetime.
Kurt: It may be too soon to tell, but I think PrEP adds an element to initiating the HIV-status conversation.
What advice would you give to other guys thinking about starting PrEP?
Damon: If you are at risk for HIV, consider using it. For those who can’t decide, ask yourself: “If I was a
woman, would I take birth control pills?” “If there was a vaccine for HIV, would I ask my doctor for it?” If the answer to these questions is “Yes,” then PrEP may be right for you.
Roger: Don’t take judgment and moralizing for an answer. You’re taking the agency in making a strong choice for your own protection. And don’t let the hurdles of our broken insurance system deter you. There are folks who can help you navigate that.
What do you say to critics of Truvada?
Kevan: PrEP is a prevention option. Why would you deny anyone using whatever tools they had available to them to prevent seroconversion?
Kurt: Life is a personal journey. People should be permitted to enjoy the pleasures of life. Criticism is better served as valued education—not judgment.
Roger: Every day, the evidence for PrEP becomes clearer. I am certain that, if we had it available in the 1980s, nobody would have shamed it.
What do you look forward to in the future?
Alan: With the advent of PrEP, a world without any stigma associated with HIV status. A world where everyone gay, straight and all other shades of sexual orientation or kink can enjoy life and sex without fear of disease or shame.
Jody: I now think living to see a time where new HIV infections are virtually zero is pretty damn possible.
Philip: I am hopeful that I can be on Truvada, that I can meet a sex-positive partner regardless of his HIV status who I can love and cherish.
Rich: I just want to keep going, keep living an active, productive, sexy life.
Damon: I want to continue to experience the work I love, the sex I crave, the partners I desire, while being proactive, responsible, and empowered about my pleasure.
“PrEP really puts you in the driver’s seat of your own health,” remarks Caitlin Conyngham, Director of PrEP Programs at Philadelphia FIGHT. “It gives you power to make a decision about your sexual health in a way that’s never been on the table.”
“It’s a wonderful thing because we’re using PrEP as a tool to help people be more open and honest with themselves and their partners,” says Dr. Koenig. The future of PrEP, she asserts, must include increased awareness among primary care clinicians. “People need a provider who knows about PrEP, who knows how to fill out application forms for patients who are uninsured, help people who are underinsured, and sign people up for copay assistance cards.”
“There needs to be barrier-free access and competent information readily available to everyone,” says Conyngham. “I hope that PrEP can bring pleasure back into the provider’s office, and back into the conversations we have with each other. We should be encouraging fulfilling sexual lives at any age.”
Chip Alfred, A&U’s Editor at Large, is the Director of Development and Communications at Philadelphia FIGHT.