He’s Been at the Forefront of the PrEP Movement From the Very Beginning. In an Exclusive One-on-One Interview, Damon L. Jacobs Shares the Details of His Trailblazing PrEP Journey.
by Chip Alfred
[dropcap]H[/dropcap]e was one of the first people to start on a Truvada for PrEP regimen—even before it was FDA-approved. He was featured in the first major national news article about PrEP, speaking candidly in The New York Times about having condomless anal sex. And he founded the first consumer-led social media resource for PrEP, which has amassed more than 10,000 members worldwide.
These are just a few of the firsts for Damon L. Jacobs. After my interview with him, it was apparent to me there would be more firsts to come for this already accomplished PrEP champion. A&U wanted to find out how he became one of the leading voices advocating for Truvada, and what he sees as the next steps for PrEP.
A marriage and family therapist with a private practice in Manhattan, Jacobs, forty-four, knew he was destined to help people from the age of five. “I would put up a stand in my parents’ living room to tell people they could come to me with their problems,” he says, as if he was channeling Lucy from the Peanuts comic strip. Born and raised in Los Angeles, Jacobs enrolled at UC Santa Cruz to study psychology. It was there he met a man who would have a profound impact on his life. Vito Russo, a fierce AIDS and gay rights activist, is the author of The Celluloid Closet, a groundbreaking look at the treatment of gay and lesbian characters in Hollywood. Jacobs, then eighteen and still in the process of coming out, sat in Russo’s class and hung on to the author’s every word. “He was so open about being gay. He was the first person I knew who was living with AIDS, and the first person I knew who died from it,” recalls Jacobs. “Vito inspired me. I realized if I seriously wanted to be a healer that I had to be an activist, an educator.” It was Russo’s confession—“I wish I hadn’t wasted so much time at bullshit cocktail parties”—that motivated Jacobs to stand up against the devastation and trauma of AIDS at that time.
From that moment on, Jacobs has been continuously involved in HIV prevention and education—
either in his career or as a volunteer. After settling in New York, Jacobs took a job with Project Achieve, overseeing recruitment and education for the last phase two HIV vaccine trial conducted by the NIH. In 2010, Jacobs learned about the results of the iPrEx (Pre-exposure Prophylaxis Initiative) study, the first randomized clinical trial of PrEP. After analyzing the data and attending a PrEP forum, “[t]he light bulb went on,” he says. His seven-year relationship had just ended. Suddenly single and back on the dating market, he asked himself, “How long do I need to be afraid of HIV? How long do I have to worry?” In his mind, “HIV started to feel more like a when than an if.” So he decided to talk to his doctor about PrEP, who prescribed the medication for him off-label. In 2011, Jacobs started taking Truvada for PrEP.
As open and honest about taking PrEP as Jacobs is today, back then it was a different story. “PrEP in 2011 was not FDA-approved. I was afraid if I was open about taking it, my insurance might cut me off.” So he kept it to himself, until he ran into a friend who told him he had been recently diagnosed with HIV. Jacobs was unnerved by the news. He felt he had failed his friend by not telling him about PrEP. “I cannot live with that happening again,” he vowed.
That was the moment Vito Russo’s influence kicked in and Jacobs started taking action. He began searching for an on-line platform to disseminate information about PrEP. He found it on Facebook. In 2013, Jacobs established the group, PrEP Facts: Rethinking HIV Prevention & Sex. “It was a call to action for me and a call to education for the rest of the world,” Jacobs declares. His goal was to start new conversations, answer questions and share the latest information about PrEP, hoping “to propel this change in a grass-roots social media way instead of relying on the powers that be to do it for us.” He anticipated a few hundred members would join the group. “Much to my surprise interest and participation snowballed, and it’s taken on an international role in awareness and discussions about PrEP.”
He never expected the Facebook group to be at the center of a political movement. Fueled by opposition to PrEP from high-profile critics like AIDS Healthcare Foundation President Michael Weinstein, people on PrEP and those supporting it got fired up. PrEP Facts has become a forum for the hot-button issues around Truvada—condomless sex, stigma, access, health insurance coverage, and patient assistance programs. It has also served as a springboard for Jacobs to become a leading global advocate and spokesperson for PrEP—most notably in mainstream media outlets including MSNBC, The New York Times, USA Today, NPR, and New York Magazine.
He has spoken about PrEP at the 2015 International AIDS Society Conference (IAS) and the 2015 Annual Conference on Retroviruses and Opportunistic Infections (CROI). He’s conducted trainings for the New York State Department of Health, and he’s embarking on a series of PrEP trainings for medical providers so they can better understand the consumer point of view.
Jacobs is optimistic about the future of PrEP and its prospects for wider implementation, but he acknowledges that changes like this take time. “We are already seeing a trajectory of people starting to use PrEP and people learning about it. We’re seeing some shifts in the medical profession, and they are beginning to acclimate to this new paradigm of prevention. This is a radical shift from the last thirty years!”
He’s also encouraged that PrEP is becoming part of our social consciousness, pointing out a recent storyline on ABC’s How to Get Away with Murder—the first primetime network television program to include this. “Things like that need to keep happening.” He would like to see a superstar diva talk to young people about PrEP. Jacobs envisions someone like Rihanna or Beyoncé saying, “If you think you could be at risk for HIV, think about this. Learn about this.”
The bottom line for integrating PrEP into our HIV prevention discussions, Jacobs believes, is facilitating “more complex and intelligent discussions about sexual intimacy and pleasure…and approaching this from a respectful perspective rather than a moral one. It doesn’t have to be all or nothing. It doesn’t have to be a dichotomy between condoms and PrEP,” he says, asserting that there are a lot of people who use both.
“When I began taking PrEP, I was going through the process of beginning to unpack thirty years of fear.” Now he’s grateful and truly inspired to change people’s minds. “At my funeral I want people to say they had better sex because of me,” he imagines. “And that better sex helped them to be more proactive and empowered in other areas of their lives.”
Chip Alfred, A&U’s Editor at Large, wrote about People Over 40 on PrEP for the October issue of A&U.