PrEP Dissent Rooted in Gay Culture Shifts, Lower AIDS Mortality
The debate about HIV pre-exposure prophylaxis (PrEP) -- anti-HIV medication taken to prevent being infected with the virus -- has been loud, and heated. The noise is about to get louder, now that two studies in Europe have ended the placebo arm of their research into the effectiveness of Truvada (a coformulation of tenofovir and emtricitabine, currently approved in the U.S. for use as PrEP when taken once daily) in preventing new infections. While the full data won't be released until next year, researchers say the drug was remarkably effective in preventing new infections -- not only with daily dosing, but also when men were invited to take the drug intermittently "on demand" based on sexual activity.
That likely won't sit well with some in the gay community, where the divide over the issue of PrEP has sometimes even devolved into finger-pointing and name-calling. But why is there a battle over an intervention that, when taken daily, has 92% or better efficacy?
TheBody.com spoke with three leaders in the LGBT community to try to get under the heated debates and understand what is really happening. Peter Staley is a longtime HIV and gay rights activist. Jack Drescher, M.D., a psychiatrist who practices in New York City, has extensive professional credentials working with the American Psychiatric Association in revamping that group's clinical manual -- specifically as it relates to LGBT people. And Sean Strub, executive director of the Sero Project, is an author, activist and founding publisher of POZ Magazine.
What they had to say is that, at its core, the argument is about changing cultural norms -- including why men have sex with each other, how they have that sex and who gets to define those boundaries. It's about marriage equality, too. And it comes back to the consistent fight in the U.S. over sex and sexuality as they interface with morality.
Staley is in favor of scaling up PrEP access. Drescher takes a more cautious approach, believing it is a choice that must be made by individuals. Strub, while characterized as being opposed to PrEP, has a much more nuanced view on the intervention. On an individual level, Strub says, it's a good choice. His issue is with a large-scale public health policy.
Staley explains that there are many layers to the PrEP debates, with three interrelated but separate types of opposition.
The first is about a new gay social norm related to relationships. This, he says, is where the construct of "Truvada Whores" was born.
"That's very much a function of this generation and this new gay culture around marriage and the increase of those espousing monogamy and future marriage," Staley says. "So those who admit by their use, by their consideration of taking PrEP, that they're really actually having sex with more than one person at a time, they get shamed by their peers."
Drescher says the sex debate is an old debate within the community.
"There are some people for whom raw sexuality is always bad," Drescher explains, "and some people for whom assimilation and 'gay people acting like straight people' is always bad."
The second type of opponents, according to Staley, are fighting to maintain the "condom code." The code was a cultural norm adopted by the gay community in 1985 to "save lives."
"For some, it became a kind of morality," says Staley. "They are strongly trying to enforce that code and fight against the tide of it falling apart."
Many PrEP opponents argue that an increase in PrEP use will result in widespread abandoning of the code, despite evidence that shows those on PrEP do not appear to have any more condomless sex than those who are not on PrEP.
There is a reason, he argues, the code is falling apart.
"In the absence of death -- which was really the motivating factor that was the building block of the condom code -- when you pull that huge motivation out from underneath it, it begins to fall apart over time," he explains. "What built that condom code was the fear of death. And that is gone."
Staley points to South Africa as an example where the same momentum to adopt condoms as a cultural norm is beginning to slip. Fifteen years ago, he notes, people were dying from AIDS and the transmission rates were out of control. So people adopted the use of condoms. But now that access to treatment has increased and people are living longer and healthier lives with HIV, the fear is subsiding.
Fear of death is a powerful motivator. During the early years of the epidemic, we saw what scientists called an epidemic of fear as well. Those who died of the virus weren't buried, because funeral homes refused to take the bodies; people sick in the hospital had their food left on trays in the hallway as staff refused to enter their rooms; people were fired from jobs; there were moves in California to pass a law that would require the quarantining of people with HIV or AIDS.
Condoms, Staley notes, were an answer to stem the tide of death, but also to relieve the tension of that fear of death the disease incited.
Strub, who says he now faces allegations of sex shaming due to his concerns about PrEP, cites his own history as someone who has been outspoken about aspects of condom promotion and as a publisher who ran early stories on barebacking:
"I've never been an advocate for 'use a condom every time' and was probably one of the first to expose (repeatedly) how hypocritical (and unnecessary) it was to promote condoms for oral sex, something almost every major AIDS service organization in the U.S. did for years," says Strub. "Having said all that, I think condom use should remain the primary first-line HIV prevention strategy promoted by public health on a population-wide basis. They are the most accessible form of prevention, generally inexpensive and effective, as well as protecting against unwanted pregnancy and other sexually-transmitted infections."
"The irony is that I'm attacked now as a shaming, sex-negative scold, but you remember how I was attacked from the other end when we published safer barebacking tips in POZ," he adds. "But coming from a community of people engaging in that behavior, sharing risk reduction tips with each other, is very different than having a public health policy that everyone should be advised about safer barebacking tips. That's far from a perfect analogy with PrEP, but in a way there is something to compare."
Drescher notes that some of this condom code response could be rooted in envy.
"If you've changed your whole lifestyle to use condoms, and suddenly the next generation doesn't have to use condoms, you might be a little bit resentful and envious about the fact that you did," Drescher explains.
He also notes some of the opposition to the adoption of PrEP and the perception it will lead to more condomless sex could be fueled by the experience of caring for and watching friends and community members succumbing to the virus in the early years -- the time Staley refers to as "plague years."
In that instance, Drescher says, "you might be more cautious."
The final type of opponents are broadly seen as pharma-opponents who argue that the drugs are bad.
Strub expresses many of the concerns of this group.
"My concern is less about any specific individual side effect than about how side effects are downplayed or confused with tolerability," he says. "The treatments are much more tolerable now than they were in the past, which is a good thing. But to suggest there aren't side effects from PrEP, or that they are only minuscule, because little has shown up in a year or two in the trials is misleading because we know many serious side effects, including from Truvada, don't show up until someone has been on the drug quite a bit longer."
He notes potential side effects such as bone density loss and kidney damage.
He further adds, "Talking honestly about side effects and what we know and don't know about them I think is a moral imperative; dismissing or minimizing them to promote widespread uptake of treatment for a public health objective -- HIV prevention -- I believe is unethical. We need a lot more focus on treatment literacy."
Staley says similar refrains were used when there was a move to expand access to antiretroviral drugs in Africa and the developing world, and even in 1996 when the "cocktails" were originally introduced. Those arguments, he said, "crumbled."
Debate Is Not Bad
While the debate about PrEP rages, activists agree it's important.
"Public debate is healthy for the consumer," Drescher says.
"The debate itself -- regardless of its painful extremes and heatedness at times -- gets people talking about HIV/AIDS and preventing the spread of HIV," says Staley. "The number one issue in reducing HIV infections is this society's unwillingness to even go there mentally. These days there's a real resistance to thinking about HIV/AIDS. It's a story that largely depresses people. They want to think it's largely over with and they want to think it's something only my generation dealt with."
"I've been critical of the PrEP discussion in the U.S. and how quickly and cheaply it fell into a binary of you're either for it or against it," says Strub. "Much of it has not been nuanced, has been far too quick to attack those with different views in a personal way and, sadly, many community leaders have been part of the divisiveness, seeing this as a campaign to be won or lost rather than a highly-complex issue with many moving parts and different communities with different needs."