In the Sessions and Hallways at the PrEP Summit, I Saw the Hope and Challenges of HIV Prevention Today
Sunday Morning, 7am:
It's the second morning of the NMAC PrEP (pre-exposure prophylaxis) Summit. The sessions yesterday were filled with research reports, data gathered from physicians, researchers and community health provider and advocacy organizations. It's gorgeous to watch -- to be in a room of mostly people of color in public health who are relieved to be in a room with one another.
It's rare for me to be in a room where my Asianness and my queerness blend in and render me happily invisible. I'm a psychotherapist who works with long-term survivors at least as often as I work with seronegative people on PrEP. I spend more time in my practice, and in my community of long-term survivors, talking about memory, grief and criminalization than about futurity and prevention.
It's just a few weeks past the elections, and everyone is on edge about the possible public health horrors of a Trump presidency. There are conversations about funding priorities and how to manage if funding is cut and criminalization and deportation policies leave more people vulnerable to the impact of HIV stigma. In public policy realms, people aren't quite sure whom to trust.
There's a press exclusion policy at this conference. At almost every plenary session, someone stands on the stage and says they are relieved by the lack of press in the room -- that they can finally say what they really believe. Media, even HIV and LGBTQ community press, are the symbolic stand-ins for the current sense of surveillance and unease. It feels like a throwback to the Reagan and Bush era. Maybe that's what we are preparing for.
Not many people are here yet. I drop my bags by the information tables and wander to the breakfast bar for a cup of coffee.
Back at my table, I organize the brochures leftover from the day before about HIV, PrEP, fertility and family planning for people and relationships of all genders and serostatus combinations.
A hotel worker who has been walking up and down the breakfast area straightening plates of muffins and scones comes over and looks at the table. What follows is my detailed recollection of our conversation.
"Good morning," I say, and smile at him.
"Good morning," he says, smiling. He picks up brochures from the table. "This is interesting. I've been listening this weekend, to some of the conversations. I didn't know anything about this." He points at the table across from me, which helps people find local PrEP providers. "How does it work?"
We talk about how PrEP works, that it can keep people who are HIV negative from contracting the virus if they are exposed to it.
He looks at me, disbelieving. "Really? That is possible? My doctor, he never told me anything like this. What does it do for people who are HIV positive?"
"Well, PrEP is for people who are HIV negative who are having sex with people who are HIV positive or who don't know their status."
"Like a vaccination?"
"Yeah, kind of like a vaccination," I say.
"Ah, well, I'm HIV positive, so I guess it is too late for me to have a vaccine, or something like it. But still," he continues, "my boyfriend -- well, he's my husband now -- he's HIV negative, so maybe he should be taking it?"
This has come up many times at the conference, that men who have sex with men, especially men of color, often aren't informed about PrEP by their health care providers. "It's certainly something he could talk to his doctor about."
"Wow. I can't imagine," he says.
"What part can't you imagine?"
"We've been together for 10 years. I can't imagine having sex with him without a condom."
"You've always used condoms?"
"With him, yes." He has tears in his eyes. He looks me directly in the eye. " You remember what it was like? When everyone was dying, all the time?"
"Yes," I tell him, my eyes mirroring his and filling with tears, "I remember."
"My first boyfriend, well, not my first boyfriend, but, you know, first serious one in this country, we might have gotten married if it had been legal then. He died."
"I'm so sorry."
"Everyone died then. Our friends. I thought I was going to. So now, with my husband, we always use condoms. I don't want him to get it. And it seems so," he pauses, looking for a word, "strange, to think about sex with him without condoms, when my ex and I mostly couldn't. I didn't know I was HIV positive until after he was really sick."
I want to tell him that I've had this conversation so many times, with friends and in my psychotherapy practice with gay men and some queer and transwomen who lived through the early years of the epidemic. That it's new and it's timeless, this question about what intimacy in one relationship means about all the intimacies before it. Twenty years ago, unprotected sex was taboo and we worked so hard to make barriered sex seem intimate, to make the epidemiological care of it stand in for a kind of sexual intimacy that it wasn't. Or, at least, that it was deeply divergent from. And now that it's possible, it's hard not to reread those older relationships as less sexually intimate.
"How's your health now?"
He smiles. "My health is good. My doctor says that my viral load is undetectable."
"That's great that you're doing so well. There's also new research that says that if your viral load is undetectable, you can't transmit the virus.
"What?" His eyes are wide and he braces the tips of his fingers against the edge of the table. I can see that some deep concept of his role in his relationship is opening and shifting a little.
"Yeah. If your viral load is undetectable, you won't pass the virus to your partner, even if you have sex without condoms, and even if your partner isn't on PrEP. Undetectable now means uninfectious."
"I didn't think that was possible. Not to pass it on. It is hard to imagine. But, really? I mean, we've been together for so long. We haven't ever had sex without a condom. I can't imagine. We've never. Our doctors never talked to us about it." He shakes his head a little. "Can you imagine it?" He has tears in his eyes.
"You can't imagine it?" I ask.
"Well, it isn't just that I want to protect him. What if," he takes a breath, "don't people go to jail? I've heard about it."
We talk about HIV criminalization, about how people are targeted for their serostatus regardless of transmission, disclosure or consent.
"Because also," he says, "I mean, now I have a green card. And so does my husband. But I used to worry about la migra, immigration. My boyfriend who died, it was a long time ago, but he didn't go to the doctor for so long because he was afraid of being deported for being sick or for infecting me."
This story is also familiar. So many people in communities -- people of color, immigrant, sex workers, intravenous drug users, homeless, LGBTQ youth, women struggling to survive intimate partner violence -- that are vulnerable to threats of deportation, police violence, poverty -- multiple overlapping categories of discrimination -- aren't able to prioritize preventative health. Many of them are "late testers" who only test HIV positive once they are sick.
"It is hard to imagine that sex could feel safe," he says.
"What would make you feel safe?" I ask.
"I don't know. I can't imagine feeling safe. A cure?"
I nod. I agree with him. I'm thrilled by all the possibilities of PrEP and undetectability. And I'm thrilled that so many of my friends and clients are staying healthy. The UNAIDS target is 90/90/90 -- 90% of seropositive people will know their status, 90% of them will stabilize in ongoing care and effective medication and 90% will achieve viral undetectability.
But what happens to the other 10%? It's been nagging at me throughout the conference weekend as people have talked, at least in the plenary lectures, about PrEP and prevention to the exclusion of conversations about the necessity of still demanding a cure. Especially in the context of a global epidemic where people in systemically disenfranchised communities globally struggle against stigma, criminalization and gender and racial bias in accessing consistent and appropriate care and medication.
Who gets left out? How might the markers of success of this plan widen the divide between who is considered savable and who isn't? Between who expects to survive and who doesn't? And from my experience as a psychotherapist, the expectation of survival -- whether it is in the context of health access, racial violence or gender violence -- is not only a question of individual bodily survival, but also of the survival of one's communities and families, both chosen and biological. One survives in the context of the survival of those who one loves. The impetus to tend to one's own health decreases when the survival of loved ones seems out of reach.
How do we insist on having conversations and setting public health policy and priorities that see the care of long-term survivors and the role of prevention as inextricably linked in the fights for health care access and an end to HIV criminalization, instead of feeling the anxiety of having them compete with each other for already limited resources and funding?
He asks me what my role is at the conference, and I tell him that I'm there with an organization that supports family planning for people who are HIV positive or in relationships with people who are HIV positive, and we are also making sure that the voices and experiences of women are amplified during the conference.
He nods and asks, "Do these drugs, does PrEP, work for women? And does undetectable viral load mean the same thing?"
I smile, "Well, there's not as much research about women as there is about men, but yes, undetectable viral loads have the same implications -- that undetectable means uninfectious. And PrEP does work for women, with slightly different dosing from men." (
"All kinds of women?" He asks.
I think this might be code, that he might be asking about transwomen, and he's hesitating and looking around. So, I answer directly and simply, "Yes. All women."
He nods. "Good. I have friends. Sisters. I'll tell them."
Around us, people are starting to arrive for the morning sessions. The PrEP table across the aisle is now staffed with someone who can help him find providers for his husband. I point that out to him.
"Amazing," he says, "that so much has changed. That I could have sex with my husband without a condom and not harm him."
There's so much more we could talk about. There are things about his experience that I want to ask him, about the psyche of trust, of remarriage in the midst of the epidemic, how he balances hope and survival. That he's already doing such hard work, believing in a future for himself and his husband and asking questions in service of the other people in is life.
He looks down at another flier on my table, which is a call to gather stories from PrEP users. "You tell stories?" he asks.
"Yes," I tell him, "it's so important, I think, for people to know that other people also struggle and survive and are successful in so many ways. That no one is alone in this. That the stories make a difference in the research, and people give each other hope and strength."
"Will you tell mine? Some of what we said this morning?" he asks.
"I'd like to if you want me to."
"Yes, I think so," he says, "but maybe, use a different name. Just in case, you know?"
"I'm happy to. Is there a name you want me to use?"
He smiles and nods his head. "Call me Miguel, in honor of, well, just call me that?"
I smile back. "OK, Miguel."
"I have to go back to work now," he says, looking over his shoulder at the breakfast bar, which is starting to fill up with conference attendees.
"Thanks for coming to talk to me," I say to him.
He looks confused, as if he doesn't know why I'm thanking him. "Thank you. Can I get you more coffee?" he asks.
"No, thank you. I'm awake now."
He nods. We smile at each other one more time, and he turns and walks away.
Keiko Lane, M.F.T., is a psychotherapist and educator in Berkeley, California. She writes and teaches about the intersections of queer culture and kinship, oppression resistance, racial and gender justice, HIV criminalization, reproductive justice and liberation psychology.