LAS VEGAS—If there's one thing all of the participants on Free Speech Coalition's "HIV Stigma & Prevention" panel would like attendees to take away from that packed gathering, it's this: U=U.
The panel—which was moderated by Dallas-based community activist Candace Moore and featured Dr. David Holland, associate professor in the Division of Infectious Diseases at Emory University; sex worker/health activist Bella Bathory, co-director of SWOP-LA; Matthew Rose, policy and advocacy manager for the National Minority AIDS Council; and actress Charlotte Sartre—did its best to explain to the standing-room-only crowd of largely adult industry attendees that when it comes to HIV, once the disease has become "undetectable" thanks to modern medical treatments, that means it's "untransmissible"; no one who has sex with that person can be infected by him/her—or in common shorthand, U=U.
Hand-in-hand with that theme, though, was another one that many in the audience appeared to have an even harder time accepting: That just because someone is infected with HIV doesn't mean they should become a social pariah.
"I've seen first-hand so many, so many cases of not HIV destroying someone's life but the stigma of HIV destroying someone's life, so this is something I'm very passionate about," Bathory gravely intoned.
But first, for those in the audience who weren't familiar with the ins and outs of HIV science, Holland explained how the disease can—and perhaps just as importantly, can't—be transmitted.
"It takes some sort of sexual activity to transmit it," he declared, adding, "It can be transmitted through things like oral sex, although that is extremely rare. It's like really rare; like so rare that CDC can't even calculate what that risk actually is kind of rare, but it's been reported."
But since much of the adult entertainment industry is based around engaging in sexual activity, the panel also covered how not to get infected: Pre-exposure prophylaxis, or PrEP, a pill that when taken regularly makes it virtually impossible for the virus to spread within the body, and post-exposure prophylaxis, or PET, a combination of anti-HIV drugs that if taken within 72 hours of exposure can virtually assure that even those who've been exposed to HIV during sex won't get infected.
At this point, the audio-visual crew managed to get the projector working, and Moore took the audience through a series of questions, most of which were aimed at testing their knowledge of HIV—and, for some reason, escargot tongs. The more serious questions asked how many in the audience had ever had an STI (response: about 50 percent); how many Americans over the age of 13 were living with HIV as of 2015 (many got that one wrong; it's 1.2 million); and the final question: "The CDC described the risk of transmission for a person living with HIV with an undetectable viral load as which of the following?" No point in guessing, really; the answer is, "Effectively zero"—or, once again, U=U.
"When somebody is HIV positive with an effective anti-viral therapy, it essentially completely blocks the replication of the virus in that person's body," Holland further explained, "so if you look for the virus, it's just not circulating in the blood and it's not in their bodily fluids and therefore, if you have sex with somebody like that, you cannot get HIV from them."
Turns out, according to Holland, it's really not that easy to get infected with HIV.
"HIV has, to my knowledge, never, ever, ever been transmitted by a face splash, getting it in your eye, getting it in a cut—those are all these things that came out of the early days of HIV fear," he said. "That just never, ever, ever transpires, so facial cumshots, things like that, just not a risk. Even if you have a blood-filled syringe and stab yourself with it, that's a one in 300 [chance], so it's hard."
Holland was one of the doctors who vetted the Performer Availability Screening Service (PASS) system, and he gave a bit of the history of STI screening within the adult industry; most notably how simply testing for the antibodies produced by HIV infection via the ELISA test proved ineffective for a population that has so much sex with so many different partners, leading to the now-required biweekly use of the PCR-RNA test used by all approved industry testing centers.
But the problem is, many in the industry got their early HIV education from people who didn't actually know much about it Way Back When ... and that's a problem now.
"Most people in this country remember the '90s ... but the majority who remember the '90s, and that's also when the majority of education around HIV sucked—early 2000s, people stopped dying, we stopped talking about it—but that moment in the '90s is forever burned in your brain, like a scary sex-ed video telling you that people were going to die from HIV," Rose recounted. "Then we had this thing that happened in 2011. ... The scientific breakthrough of the year? Considered the most powerful prevention tool in the HIV toolbox: U=U.
"See, in 2010, we did this study called the Partner Study," he continued, "where we followed a bunch of people having sex, and we said, 'That's not enough!' So [in the 2014 Partner 2 Study], we studied a bunch more people—mainly gay men, because only gay men have butt sex, and people tell me butt sex is riskier, but they had 16,000 cases of sex ... and we had some more observational studies, and we all learned one thing from all of these studies: That people who are undetectable, we have had zero cases of transmitted virus, to the point where one of the world's leading HIV scientists ... has said, it would take thousands of person-years, thousands of lifetimes for people to find a single point of transmission, and yet in 2019, after eight years, we still have the same stigma. ... We have not figured out that literally the most powerful thing people can do is stay in care, take their daily pill, and live their lives."
Rose went on to note that nowadays, there are many avenues to get treated for HIV infection, including private insurance, Medicaid, grants from pharmaceutical companies—and if all else fails, there's the Ryan White Foundation, which was set up exclusively to treat HIV sufferers. PrEP is also available from similar sources—and Bathory touted one of her favorites.
"One of the things I've fallen in love with is an app called Nurx.com, and they do PrEP delivery at home, and they take your co-pay card, so you can go to [PrEP manufacturer] Gilead and get a co-pay card, use your insurance but you can use it with or without insurance," she told the audience. "You sign up online; they send you an at-home HIV test so they can make sure you're negative before beginning treatment, and then you can get a three-month supply of PrEP shipped to your door without having to go and speak to a doctor, and that removes a lot of the uncomfortable conversation. Nurx has been really sex worker, sex-positive friendly and they are really great at helping navigate if you have financial issues."
"If you don't have insurance, Gilead has a really generous patient assistance program, so if you make less than $60,000 a year and you don't have insurance, you can get it completely for free," Holland added. "And if you want to know a place to get it near you, there is a great website called preplocator.org, which will let you filter for whether you have insurance or not and give you local clinics that are known to provide good PrEP service."
But then the discussion turned to the question of HIV, detectable or not, among performers—and Bathory was quick to shut down concerns.
"The last on-set transmission of HIV was in 2004 ... and people get so freaked out when a performer gets diagnosed: 'Ohmigod, who was it? Who was it?' Let me just answer one of the questions that we get, which is, 'Why doesn't FSC let us know the name of the positive performer?' Because it's none of your fucking business!"—an answer which elicited a round of applause from the audience.
"The thing about the gay side is that they're educated about this; they know treatment as prevention; they know undetectable is untransmissible; they don't shun their HIV positive performers out of the industry," she continued. "I know people have that fear of, 'Ohmigosh, there's like HIV sneaking around waiting to infect us,' but the last transmission was in 2004. Since 2016, we've had 14 HIV diagnoses of people coming into the industry. Those are 14 people who were diagnosed HIV positive that did not enter the performer pool. We also had three performers that were actively performing, tested positive and the PASS system caught it, so that means that in the past two years, we've had 17 diagnoses, zero on-set transmissions. That's over the last two years ...
"I know you have fear, and that's a natural response, to protect your body," she said. "But have a little bit of fucking compassion, because when you work in the adult industry, all of our bills are paid by fucking on camera. When there's an HIV contraction and somebody has to go through that, that's not just like a bubble, that's not just a person on the street that has to deal with HIV; this is a sex worker whose body has got them through everything. Their body pays their bills, and if we can't make room to take care of our performers when they're diagnosed HIV positive, what are we doing to take care of each other as an industry?"
But at that point, Bathory, who's not a board member of PASS, FSC nor APAC, strayed into uncharted territory—so much so that Free Speech felt it necessary to issue a statement denying that what she said was even being considered.
Bathory, apparently speaking only for herself, brought up the notion of having two separate databases. Referring to the systems as "regular PASS and PASS+," she said, "When you opt to go into that [PASS+] system, you are consenting to work with undetectable HIV positive performers, and what we're trying to do with that is remove the awkwardness, the having to disclose every single time, and just have all these people who are woke and aware and comfortable being with HIV performers, they will be in a separate system and they will get drastically discounted testing rates. It's a thing in the works; we're still trying to figure out the entire thing."
In a statement released on Monday, FSC pushed back on the idea that a system like PASS+ was under serious discussion.
"There was much discussion about how PASS might evolve in the future, made by health and legal experts outside of FSC-PASS, but all was speculative. PASS has not changed, nor is there a current plan to change it," FSC said in a statement released on Monday. "To be clear: the PASS system does not allow anyone working with HIV, regardless of whether or not they are capable of transmitting the virus ... all discussions related to PASS, including the development of a separate testing system, were and are theoretical. ... At no point, did FSC announce any change or new protocols, nor does FSC have plans to do so."
Indeed, in response to an audience question, Leue stated, "I just want to clarify: Currently, there is no HIV positive performers, whether on treatment, not on treatment, in the PASS system, and that has been the regulation since the PASS system was created in 2011. As we continue to have scientific discussions around how science evolves, we are very aware of the nuance between what it means to be able to have informed consent as a performer, as a sex worker, to be allowed to make a choice in all regards, whether you like escargot tongs or you don't like escargot tongs, so that's incredibly important."
However, Leue did say that he would like to find a way to bring the gay side of the industry into a PASS-like system, and noted that some gay sets are already PASS-compliant.
"PASS+ is a theoretical framework for a potential solution for the gay industry," Leue later told AVN. "We have acknowledged that we are considering it, but all discussions related to PASS, including the development of a separate testing system, were and are theoretical, so it doesn't exist yet, but we are not saying that we aren't continuing to consider it. Our statement was only to make clear that we already have or are considering making changes to PASS. The two would be entirely separate systems. But again, so far it is only a working theory."
Much of the last half-hour of the seminar dealt with the subject of the stigma many feel surrounding HIV-positive people.
"I think the most important thing we can do is talk about this, outside of this room and in smaller groups," Bathory advised. "You hear people make terrible jokes, jokes about stigma, jokes about being HIV positive or about the Charlie Sheen debacle was happening. We've really got to change the narrative. ... HIV is not a fucking death sentence anymore and I think once we get that idea out of our head, that fear goes away. ... Most people, if they have access to care and they stay on it, become undetectable in like a month. It's fucking incredible."
On this topic, Leue had the seminar's final word: "What our intent is, is to make sure that the information that Dr. Holland, Bella, Charlotte and Matthew and so many others in this field carry around every day also permeates our industry so our industry can have a good dialogue about it and make good, informed choices, understanding how risks work, understanding how our protection options work, and making sure that you can choose for yourself because it's your body and it's your choice. I hope that we can continue this dialogue. ... This is an incredibly important dialog, and as an industry, we can change a whole lot and we have an incredible amount of power; we're an incredibly powerful community."
Pictured, l-r: Candace Moore (at podium), Bella Bathory, Dr. David Holland, Charlotte Sartre, Matthew Rose.
