Truvada: Consider it one of the most misunderstood drugs currently on the market.
Clearing through the fog, the question at hand is this: What is this controversial drug? What is a "Truvada whore"?
What is Truvada?
Truvada is the pill that's exterminating HIV antigens in HIV-negative individuals.
It's a big deal.
Truvada is a two-in-one anti-retroviral drug that's been consumed as treatment for those who are HIV-positive since 2004. In tech-speak, it combines tenofovir and emtricitabine, two nucleoside reverse transcriptase inhibitors (NRTI) that prevent the conversion process when the HIV virus attempts to take over a cell and replicate it as virus-infected. It's like sending in covert agents to healthy cells to fend off burglars.
It's not a new drug, but its application is. By 2010, studies had demonstrated the NRTIs' effectiveness as a line of defense in HIV-negative individuals; by July 2012, Truvada had received FDA approval for preventive use.
A spokesman for California-based Gilead, the name-brand manufacturer of the drug (which has the patent until 2021), told PhillyVoice.com that 3,253 individuals began Truvada use between January 2012 and March 2014. Those users, who can get a prescription through their primary care providers, adhere to a once-a-day dosage; in return, they get peace of mind. That's because Truvada has a 92 percent protection rate. Combine that with condom use, and it's like doubling the width of a safety net.
But what's dominated the mainstream Truvada narrative since its approval is the slang label "Truvada whore" -- the kind of term you'd expect to find hiding in the archives of UrbanDictionary.com, not trending on Twitter. Its implication is that anyone who seeks the drug for preventive use must have a lot of sex -- risky, irresponsible sex, at that. It's a way of demonizing or sex shaming those who use the drug, presuming that it takes an already promiscuous person and further enables their sexual habits.
This type of playground-style name-calling is keeping at-risk individuals from using a drug they need. May 2014 CDC guidelines recommend 500,000 at-risk people in the United States take Truvada -- a far cry from Gilead's reported 3,253 actual prescriptions. Affordability is certainly a factor (without insurance, it can cost as much as $13,000 per year), but the perceived root of the apprehensiveness from patients stems back to a November 2012 Huffington Post Op-Ed titled "Truvada Whores?"
A year later, a reclamation of the label was sparked by San Francisco-based Truvada user Adam Zebowski, who, miffed, took the term and turned it into a campaign-style hashtag. (A "Truvada whore," in that sense, is someone who's sex-positive and fighting the notion that they're promiscuous.)
Truvada users are taking to social media to give the "Truvada whore" label new meaning.
Further unpacking the "Truvada whore" subtext, the common argument is that use of the drug -- or
PrEP (pre-exposure prophylaxis) regimens in general -- will lead to a decrease in condom use. The larger concern is that overall STI infection rates could increase as a result.
However, a
study released in the UK in February found that in a real world setting, PrEP subjects were no more likely to be infected with other STIs than patrons of participating health clinics who were
not on the regimen. The only recent research to claim otherwise found that
45 percent of 90 surveyed Truvada users were less likely to use a condom, but failed to account for the context in which they tossed their Trojans in the first place -- like, for example, a monogamous relationship.
This is where the birth control comparisons start -- a callback to 1873 when contraception literature was legislatively recognized by the Comstock Act as "obscene," "illicit" and "immoral" in the United States. Because of a long-running stigma of birth control as a license for women to have more sex, "the pill" didn't receive FDA approval until 1960.
"There's definitely a parallel to be drawn between birth control and Truvada," Elicia Gonzalez, executive director of GALAEI and a sex-positivity activist, told PhillyVoice.com. "It's the same old antics about people trying to control other people's behavior, whether that's through denied access to birth control, or Truvada -- it's nothing new, and it's something we've been fighting for years."
Philadelphia's HIV infection rates are far from being at a place where casually tossing out stigma-breeding terms like "Truvada whore" can be perceived as all-in-good-fun snark. By 2017,
15,000 Philadelphians will be living with an HIV or AIDS diagnosis; that's an increase from the 11,000 reported at the end of 2013. Of those 11,000, 674 of those are new diagnoses. And while gay men remain the most effected group, heterosexual men and women account for 275 of those infections. That's not counting injection drug users, who get their own category. No one group is left unaffected by HIV infections in Philadelphia.
'Truvada whore' is only feeding an epidemic that's far from over.
Philly's So-called 'Truvada Whores'
Ian Evans, of North Philadelphia, was prescribed Truvada in October after one encounter with a partner, he says, "scared the s--- out of me."
"There have been instances with guys who I didn't think I could completely trust, but the person I had the scare with was someone I thought I could," Evans told PhillyVoice.com.
He immediately got tested, came back clear and called up his doctor.
He'd heard about Truvada on his own months earlier while working as a legal aid at Mazzoni Legal Services (a branch of a Philly-based LGBT wellness organization) during the summer of 2014, but, unsure of whether he was at-risk enough to be on the regimen, shrugged it off. His doctor was relatively uninformed about the drug when he approached her about it, he says, so he put off taking it.
He's aware of the social blemish that comes with the drug, he says, and steers clear of making it a point of conversation -- putting it plainly, it's no one's business but his.
"I see this as an insurance policy just for myself, for the worst-case scenario," he says. "But I don't think it's made my behavior more 'risky' ... I think it's irresponsible to approach it as, 'Oh, I don't need to use condoms anymore,' because there are plenty of other things you can catch through sex other than HIV."
And that's the argument commonly lobbed at people like Evans: That he'll either stop wearing condoms, or, worse, also forget to take doses and leave himself and others exposed to HIV. He sets reminders on his phone to take it every morning.
Per the birth control comparison, it does feel freeing to take the drug, he says, but not in the way stigmatizers would suggest.
"Instead of going to get tested and thinking of every experience I've had, wondering if I've been safe or if there's been a possible exposure, I don't have that irrational fear anymore. It's liberating, in that way," he says. "It takes the hysteria out of it. But I don't think it's responsible to see Truvada as just a 'we're back to the free love of the '60s' sort of thing.'"
For every Truvada user like Evans, who's hush-hush about his use of the drug, there's also someone like Stephen Kramer, who has no qualms about owning up to his use of PrEP -- in fact, he wears it with pride, posting it on social media accounts. It's a direct counter to the "Truvada whore" label.
People like Kramer largely inspired the "
#TruvadaWhore" movement on social media, an attempt to take the sting out of the label, much in the way the LGBTQ community has transformed the word "queer" in recent years.
Ian Evans: "Instead of going to get tested and thinking of every experience I've had, wondering if I've been safe or if there's been a possible exposure, I don't have that irrational fear anymore. It's liberating, in that way."
"Any time you talk about it and the more conversation goes on, you remove the stigma, because stigma's all just finger-pointing," Kramer told PhillyVoice.com. "If you take ownership of what you're doing, you can no longer be ashamed by it, because everyone knows what you're doing. It takes someone's power away."
Kramer notes from personal experiences that Philadelphians are exceptionally "prudish."
"They don’t want to lay claim to the fact that they’re sexually active people, and because of that they’re too embarrassed to walk into a place like Mazzoni or Washington West [STI testing clinic], because it comes with a stigma," he says.
"I’ve seen that happen. There was an attack on my best friend once. He posted a picture of his negative HIV results on Facebook, and people were complaining about that. One comment was, ‘Oh, I guess we know what happens when he stops posting them …’"
That there's still shaming for getting tested -- let alone taking Truvada -- is especially worrisome. Conversations like the one Kramer describes are the ones keeping legitimately at-risk folks away from the drug out of fear of "Scarlet Letter"-type social branding -- a notion that, for anyone who survived the AIDS crisis of the 1980s and '90s, simply sounds absurd.
Out Alive
Skiba is a survivor of the AIDS crisis. Of his social circle, three of his four long-term lovers perished (one is alive, but positive), and "dozens" of his friends lost their lives, whittled down to shells of themselves by the disease's ruthlessness. This is the reality for countless survivors of the crisis -- a reminder that HIV is more than just a case of the sniffles, and that "Truvada whore" has roots in language that stems all the way back to the crisis' origins.
"The underlying premise here is that -- and this has always been the background feeling -- is that people who got AIDS asked for it. They deserved it," he says. "It's unspoken, but it's always been there. If you got AIDS, you were a whore."
That "Truvada whore" became a sex-shaming label, then, is no surprise to Skiba. Nor is it a surprise that most of its dialogue revolves around gay men.
"It's exactly the way it was with AIDS, being a gay disease," he says.
Bob Skiba: "The underlying premise here is that -- and this has always been the background feeling -- is that people who got AIDS asked for it. They deserved it. ... It's unspoken, but it's always been there. If you got AIDS, you were a whore."
"I had friends in the '80s who were basically celibate for 10 or 15 years, which was not unusual at all -- they were so frightened," he says. "So, is Truvada liberating in that sense? Yes, yes it is. It gives you more choices, if anything, and to not live in fear is liberating."
Squashing the Stigma
The consensus on how to kick the "Truvada whore" stigma is to first focus on open, honest dialogue about sex -- never mind Truvada. Because it's not just PrEP that's stigmatized, it's everything surrounding it; the blushing that still happens at routine check-ups when sex awkwardly creeps its way into the conversation.
“I love it when people reclaim hurtful words – ‘queer,’ the movement around 'dykes' and others. But my question is, ‘Does that stop the
conversation?’ And it may," says
Caitlin Conyngham, coordinator of Philly FIGHT's Youth Health Empowerment PrEP Program, told PhillyVoice.com.
Her PrEP program, she says, engages in conversation that acknowledges sex as pleasure. The goal is to not alienate anyone who walks through the door.
Philly FIGHT's Y-HEP (Youth Health Empowerment Clinic), which sees about 125 patients under the age of 24 per month and has signed on 50 Truvada users, is unique in that -- despite its initial focus on young gay men of color and trans individuals when its PrEP program started in January 2013 -- it's not strictly targeting at-risk groups in the same way many providers do.
"Our approach with PrEP is kind of like the present day approach to birth control: If you have someone who’s of a child-bearing age, you’re going to talk to them about birth control. We take that same approach with PrEP: Anyone who walks through the door, merely by living in Philadelphia, is at risk for HIV," Coyningham says. "I think that, when you're self-selecting who you think is right for PrEP, you're missing a whole range of people, and you're stigmatizing."
Do the math: There are 3,253 people nationwide on Truvada as PrEP, but there are, by Gilead and CDC standards, at least 1.5 million people at risk just in Philadelphia who could (potentially, but not necessarily) benefit from its use. That's not to mention every other at-risk city in the country.
Conyngham's advice to Truvada users put in a position of defense: "Be a smarty pants next time someone calls you a 'Truvada whore,' because there's really no difference in risk behavior," she says.
In other words, don't be afraid to not only defend yourself, but educate others.
"It's better to talk about this 'Truvada whore' stuff than pretend it doesn't exist," Conyngham adds. "Because there’s always progress being made, but what matters is how we communicate these things -- making sure progress isn't just happening in a lab, but coming back to communities.”
#TruvadaWhore hashtag /Instagram
