Vital questions, expert answers, a few controversies and a lot of potentially life-saving information about PrEP, the HIV-preventive prophylaxis, reverberated from Urban Mo’s in the heart of the San Diego’s LGBTQ Hillcrest neighborhood out across the nation via social media and streaming video Saturday, as LGBTs In The News with Thom Senzee returned to the nationally touring panel series’ hometown.
Panelists included actor-activist and PrEP navigator, Blossom C. Brown, community organizer, Lukas Volk, UCSD infectious disease physician and researcher, Dr. Susan Little, who is also head of Lead The Way/Good To Go – a leading HIV-testing, awareness and prevention campaign – plus Timothy Ray Brown, sometimes referred to as “The Berlin Patient.” Timothy Brown is the only person ever to have been declared cured of HIV by the global medical establishment.
Headlining the panel engagement was award-winning journalist, Benjamin Ryan who flew to San Diego from New York City to lead the discussion. Ryan is widely recognized as the most prolific and possibly the best informed journalist in America reporting on Pre-Exposure Prophylaxis, or “PrEP”.
In the days leading up to the engagement, Ryan was quoted in news articles and at lgbtsinthenews.com: “I take something of an agnostic view, looking for data-driven facts over any kind of an activist agenda. It is not my job to promote PrEP, but to advance an up-to-date understanding of the science behind PrEP. That’s not just the science about how it works for the individual, but research about how it is winding its way into the health care system and how it works on a public-health level. People often ask me, simplistically, if I’m, “pro- or anti-PrEP.” I tell them they’re asking the wrong question.”
Ryan’s pre-panel statement set the tone for a conversation among the five panelists that presented an objective and surprisingly diverse, facts-based discussion in which live-and online-audience participation was a major component.
“Some of the highest-risk people out there in regard to HIV infection are gay men and transgender women of color,” panelist Blossom C. Brown, who is herself a trans woman of color, said during the discussion.
Other questions on which the panel shed light came via Twitter. A user named “Moonaholic” (@littlelovefish) tweeted, “…I heard PrEP could cause kidney damage! Is this significant and reversible?”
As Dr. Little pointed out, Truvada – the drug that comprises PrEP – is not metabolized through the kidneys.
Blossom Brown brought an important distinction during the panel engagement between PEP and PrEP. LGBTs In The News visibility partner, Radiant Health Centers tweeted live during the event a succinct synopsis of the discussion around that distinction:
“PEP is a medication you take within 72 hrs of potential #HIV exposure to prevent transmission—like HIV’s morning after pill. PrEP is a pill you take daily to prevent it–like HIV’s birth control pill,” the Orange County-based LGBTQ health-and-wellness and HIV care organization tweeted from its @radianthealthoc account.
Weighing in from the grassroots, sex-positive community level, Lukas Volk – who in addition to his community-organizing work is also head of marketing and communications for Mo’s Universe and its array of popular Hillcrest-area bars and other venues, worked for years as an executive in gay, adult entertainment – shared a more circumspect, even tentative perspective on Gilead Sciences’ blue pill.
“I’m cautiously optimistic with PrEP,” Volk said to the audience and his fellow panelists in response to moderator Thom Senzee’s question about his vantage point as someone who’s active on gay hook-up apps, has seen the importance of HIV prevention in the gay adult film business, as well as his role as an LGBTQ-community organizer—and as someone who happens to have close friends who are scientists currently working in HIV biological research.
“Our community is thrown this pill on a daily basis,” Volk said. “It’s put in our faces everywhere. You watch Ru Paul’s Drag Race and there are PrEP commercials. You go to a bus stop in your ‘gayborhood;’ there’s PrEP advertisement. You do anything at our San Diego LGBT Center and there’s PrEP.”
Volk described a dynamic called “PrEP shaming” that can be used to verbally abuse both those who are sexually active in the LGBTQ community (and other communities or the general public, for that matter) who are on PrEP—as well as those who are not.
“It almost makes you feel bad if you’re not on PrEP,” he said. “I have been PrEP shamed. I have been on a hook-up app and told people ‘I’m old-school and would prefer to use a condom’ [only to have others on the app] say, ‘you’re crazy. Why are you using a condom? You should be on PrEP.’”
The other form of PrEP shaming is when those on PrEP are accused of reckless promiscuity. One audience member said he has been called a “Truvada whole” and “PrEP slut.”
Benjamen Ryan and Dr. Susan Little noted during Saturday’s engagement of LGBTs In The News that PrEP was recently approved for use by adolescents under a doctor’s supervision. Ryan pointed out that, while the FDA’s approval of PrEP for adolescents lacked a specific age range, the decision to approve was based on a study that looked at 15 to 17-year-olds.
Senzee wrapped up the landmark panel discussion and nationwide audience Q&A by asking each panelist a question that was used as a hashtag to promote the event; that being #shouldiprep?
“It really is a person’s decision whether or not to use PrEP,” said Timothy Ray Brown, whose singularly unique experience of having been cured of HIV via two bone-marrow transplants primarily aimed at curing his leukemia (which they did). His marrow donor had two copies of an HIV-preventing gene mutation.
“I completely understand there are people who prefer to use condoms,” he said during the live event. “I personally prefer not to. When I decided to go on PrEP it was because I was having lots of sex and I was afraid I would get the virus [again].”
Timothy Ray Brown said some friends admonished him not to take PrEP because it could “ruin his story” as the only person to date who has been cured of HIV.
“I don’t know if it’s ruined my story,” he said. “I just want to be safe. I don’t want HIV. Been there, done that and I don’t want to do it again.”
Dr. Little agreed that PrEP is an extremely personal issue.
“It needs to be an individual decision,” she said. “My hope is that it is a risk-informed decision. I think one of the things many people don’t understand is a realistic assessment of their risk [of HIV infection].”
Dr. Little pointed out that while overall, the numbers of new HIV infections nationwide are going down, two groups are seeing increases: Hispanic men who have sex with men, and men who have sex with men who are between the ages of 25-34. At the same time, the number of new infections among African Americans has stabilized.
Dr. Little and UCSD’s Lead The Way/Good To Go program is among a growing number of destinations, including AHF Health Care Center and Pharmacy where HIV testing, counseling and PrEP prescriptions can be had—often in a single visit.
The Sept. 22 engagement of LGBTs In The News was made possible by Mo’s Universe/Urban Mo’s, Dr. Bronner’s the SAG-AFTRA LGBT Actors Committee, AHF Pharmacy, GoGURUNow.com, GoodToGo – a PrEP awareness campaign of Lead the Way, Porto Vista Hotel, Little Italy San Diego & Top of The Bay , Christopher Michael Hair + Makeup, and Radiant Health Centers, and Lafayette Hotel and Swim Club.
“When we learned that LGBTs In The News was presenting its first-ever forum on PrEP, AHF Pharmacy knew we wanted to support this engagement of the panel series,” said Joshua Kessler of AHF Pharmacy.
“There’s a lot of information about PrEP out there. Some of it’s not always accurate. We support getting accurate information to people about HIV prevention and PrEP’s role in getting to zero new infections. But an individual can only make a sound decision about whether or not PrEP is right for them when they have a full understanding of the process, the risks and the potential benefits of being on the prophylaxis. All of people think they can’t afford PrEP or those who don’t have insurance don’t know we have resources to help them pay for the drug—if they decide it’s right for them. ”
Myriad other issues and questions about PrEP were addressed and explored at the event—too many to list in a single article. Fortunately, a Facebook Live video (link: https://bit.ly/2xER2A6) can be found at Radiant Health Center’s Facebook page and at lgbtsinthenews.com