This article from San Francisco AIDS Foundation appeared on their website Beta here.
“Undetectable” is a medical term—but its meaning goes beyond lab reports and doctor’s offices. It refers to suppressed viral load, which is both a key goal of treatment to protect the health of people living with HIV and an exciting new tool for reducing risk of HIV transmission to negative sex partners. (Want to know more? Watch our animated video for an easy-to-follow explanation of undetectable viral load and its importance for HIV health and HIV prevention.)
So how do we talk about it? And what does it mean to different people in different contexts? BETA put these questions to Zachary Barnett and Derek Brocklehurst, two gay men with different experiences of “undetectable.”
Zachary is the founder and executive director of the Abzyme Research Foundation, an organization working toward an HIV vaccine, and has written candidly in the Advocate about his experiences disclosing his own HIV status and undetectable viral load. Derek brings his perspectives as a San Francisco-based registered nurse specializing in HIV and an outspoken past PrEP user with HIV-positive and HIV-negative sex partners.
In this Q&A, Derek and Zachary offer their takes on what “undetectable” means, and their advice for how to talk about it with hook-ups, dates, and other important people in your life, whatever your HIV status.
What does “undetectable” mean to you, in your life?
Zachary Barnett: Its meaning is two-fold. The first meaning is very clinical: Doctors aren’t able to find a detectable amount of virus when they screen you at regular check-ups. This applies, obviously, to someone who has already been diagnosed as HIV positive, and who has controlled replication of the virus.
What it means in a social context is that this person, in theory, is the least “infectious” they can be, biologically. So, this is someone who is in relatively good health, in terms of their HIV, and is taking care of himself—and who is extending courtesy to his community by taking care of himself and thereby presenting less chance of transmission to HIV-negative partners.
Derek Brocklehurst: In my experience, when a guy says he’s positive and undetectable, that usually is the initial clue to me that he is on medication, he knows his status, he’s taking steps to improve or maintain his health, and he’s taking care of his life. So that is Step One for me. I want to destigmatize sex with positive guys. It’s not taboo or scary: This person is a person. That’s what “undetectable” means in my head.
When I ask guys if they’re undetectable, it’s one question in a series. I might start with, “Do you know your status?” “Yes, I’m positive.” “What’s your viral load?” Asking the viral load question triggers a series of follow-up questions that help gauge where he’s at and how he takes care of himself.
Today, so much of this is done electronically, on Grindr and Scruff and Jackd and all these applications and online connections, that communication can actually be easier than being face-to-face.
How have guys responded when you have asked those questions? Are they surprised, or do they appreciate it?
Derek: For the most part, they appreciate that I’m bringing it up. I guess I’m sort of at an advantage, in that I’m an HIV nurse and I usually disclose that up front. They might expect that I’ll know what all these terms are. But for the most part, guys are thankful that I ask these questions. And it gets the dialogue going.
Also, I always stay away from language like “clean and negative,” or “clean and healthy,” or “disease free.” All those labels are really biased, and they can be hurtful to people who are positive.
Zachary, what about scenarios in which you’ve brought up undetectable viral load or been asked about it when you’re dating someone or looking to hook up?
Zachary: Well, I feel like the situation is a little bit different if you’re the positive person. Not that you’re on the defensive, per se, but I feel there is an obligation to disclose—an ethical one, and in some situations a legal one. For example, Lambda Legal is taking up a court case in Ohio, where a man has been sentenced to 25 years in prison because he had protected sex with someone, and they found out afterwards that the man was HIV positive. There are still laws about not disclosing HIV status in upwards of 30 states.
So in a “chat” scenario, if you’re talking on a mobile device, like Derek mentioned, I think the immediate go-to is to disclose, or to ask the person you’re interested in sleeping with, “What’s your status?” I often lead with “Are you poz friendly?”
Even if it doesn’t lead to something, or even if the person ends up rejecting you, you’re putting the burden of being cool in their court. It becomes basically like saying, “You know, I’m just not into hairy guys.” You’re putting the rejection in their court, which is advice I tell a lot of guys who are newly positive. It is easier to just say, “Are you cool with protected sex with HIV-positive guys?” It shifts the dialogue into a more neutral zone.
In a dating scenario, I think it’s even harder. I think if you go on two dates with someone and you develop a rapport, and then you have to bring up this kind of clinical discussion, it brings a tone of seriousness that often the relationship isn’t ready for.
It takes practice. I tell guys that a lot. The first couple of times, it’s probably not going to go well—you’re going to clam up, or you’ll get nervous. But the more you’re comfortable with it yourself and the more you accept what’s going on with you, the more you allow other people to accept it, too.
And I would also say the initial signs and responses they give you are 90% indicative of how they will behave and what they will do with you. So, if their first response is frosty, then that person probably isn’t open to being with an HIV-positive guy.
What if you tell someone you’re HIV positive and undetectable and he asks, “What does that mean?” I think a nice thing to do, from a positive person’s standpoint—or someone in Derek’s position—is to offer a bit of gentle education. You know, people don’t want to go around on Grindr giving sermons, but I think it’s nice to help the conversation along and move community knowledge forward.
It sounds like you’ve talked quite a bit with newly diagnosed folks about how to handle these conversations.
Zachary: Well, I came out publicly in the Advocate article in 2012. Since that time, everyone knows someone who has been newly diagnosed, and they point them in my direction because I’m working in the field. So I’ve had a bunch of experiences where someone calls me and says, “Hey, can you go have coffee with my friend?”
Looking back on what the first three to six months were like for me—they were really tough. I think it’s gotten easier in the last five years, because more people are talking about being undetectable and what that means for sexual behavior, and also because of the introduction of PrEP. I know more and more guys under 25 who are on PrEP and are very comfortable talking about HIV. I think that’s a new thing, and it’s fantastic, because community knowledge will be the turning point in this epidemic, on the behavioral side.
Say you’re advising someone how to ask about undetectable viral load and what it means for the kind of sex that they can have. What do you think they need to know?
Zachary: This question terrifies people! But I think it’s a good question.
If you start getting into the real nitty gritty with people who don’t have a work-related or deep relationship to HIV, you lose them. I think it goes over their head. So my advice is, always keep it simple when you talk about “undetectable” and sex.
My sense is that sex with an undetectable guy is completely, 100% safe when you use a condom. And people have kind of yelled at me about that, but I go back to clinical studies. Where is the documentation for undetectable people transmitting HIV? And then you add an extra layer of protection with condoms, and what are you looking at there?
All of my serious relationships since I’ve been positive have been with negative guys, and that conversation is central within our understanding of what we can do. But I think it’s honestly a very difficult question to answer publicly.
Derek, help me out here. What do you think?
Derek: I agree with you in a lot of respects. After the age of 22 or so, when I educated myself about HIV and viral load, I never chose partners based on HIV status. But I think it’s important to talk about the act as well, and that undetectable viral load means undetectable in the blood.
There have been studies suggesting that, most of the time, the virus is undetectable in semen if it’s undetectable in blood, but it might not always be consistent. If you get bareback topped by a guy with an undetectable viral load, and you let him unload in you, that’s pretty safe (in terms of HIV) if you’re on PrEP and/or you use condoms. But at the same time, I want people to be educated and know what “undetectable” means for each individual.
Zachary: I think that’s the problem here. People are basically looking for a checklist: “With a partner who has an undetectable viral load, you can do this and this and this.” Honestly, people are hesitant to give that checklist because of liability. People’s personal practices around this scenario differ from what they will say in public simply because they don’t want to be held liable for a rare occurrence that ends up hurting someone.
So I think the safest thing we can say is that being undetectable massively reduces any chance of transmission. It adds a huge layer of protection against transmission—and, similarly, PrEP adds that huge layer of protection for a negative person. With the addition of condoms, you honestly have nothing to worry about, right?
And with any behaviors outside of that model, you run into so many variables that you’re going to have to take the burden of knowledge onto yourself. We can’t give you a cheat sheet for that. People need to understand those variables and make educated decisions about what level of risk they are comfortable with.
What factors into undetectable viral load and its effectiveness for HIV prevention? See our fact sheet to find out.
You know, a former scientific advisor for the charity that I run spoke at the International Mr. Leather competition a couple years ago, and for his Q&A session, he chose to talk about PrEP. If you’re not going to use condoms, he said, PrEP is an amazing alternative to help protect you from acquiring HIV. And it was this huge, huge deal. Similarly, when I wrote my piece in the Advocate about disclosing my status and talking about being undetectable, I got so much hate mail saying that condoms are the only thing.
As soon as you start saying anything else works besides condoms, you’re opening Pandora’s box, and you’re responsible for everything that follows
Derek: That’s the worst. I can’t stand that.
Zachary: I think when the condom line was really being enforced, it worked. For a while, it did curb infection rates—and then it stopped. And I believe the reason it stopped is that the visible reminders of the burden of HIV decreased, and people stopped being afraid of the consequences, because now the consequences are less intimidating.
Derek: There is a lot of controversy in the community, and you have two parts to both generations: You have older guys who only believe in condoms, and you have older guys who only bareback. And then you have younger guys who are loving barebacking and they don’t know much about HIV, and younger guys who are like, “Oh my God, I’m in a long-term relationship of five years and we always use condoms.”
So it’s critical to find that grey area and get people to understand that there are other prevention tools [like PrEP and undetectable viral load] that can help if sometimes you “slip up,” or you get intoxicated, and you don’t wear a condom.
We’ve talked about how you address “undetectable” with potential partners; how do you talk about it with friends, or people in your family, or folks you know professionally—people whose stake in that conversation is different?
Zachary: In my family, they rely on me to kind of guide them about my health and my check-ups. And I think the word “undetectable” has definitely leaked into mainstream language. I think that people naturally understand it’s a good thing, that it means you’re in a better spot.
I think the question around sexual behavior is harder for people to broach because people are inherently a little prudish. It can be difficult to talk about sex with your family! But I think a situation that is more interesting is talking with family members of partners.
I’m openly positive, and my serious relationships just happen to have been with negative guys. Coming in contact with their families and developing family relationships—that can be very challenging, because people are naturally protective of their kin and their offspring.
Sometimes that’s the more in-depth conversation, where you actually have to walk them through a bunch of research and terminology to say, “I’m not putting your son at risk, and I’m actively mitigating as much of the risk as I can through X, Y, and Z.”
I think that’s a situation, more often than not, that’s more challenging. One would hope your own family would do the best they can to mitigate stress for you and support you wherever they can. Your partner’s family may not have that perspective, you know? Their prerogative may be, “I want you to completely reduce any potential harm to my son, my baby.”
So I think that’s the situation—more than disclosing to a partner, even—where you really have to be versed, and comfortable with leading someone to a more knowledgeable position, and comfortable being patient with them. Because the initial reaction may not be encouraging.
Derek: I agree with Zachary. We’re trying to destigmatize HIV status within the gay community, and education about what undetectable viral load means for HIV health and HIV transmission is a huge part of that. With our families and others who may just now be accepting us as gay, you’re adding another layer: What does it mean to be HIV positive and gay?
I think really educating friends and family and just being as open and honest and communicative as you can is the key. That’s how I’ve always tried to live my life. I love education; I can’t say it enough!
All month long, BETA will release new articles and resources exploring the meanings of undetectable viral load. Have questions or thoughts about what “undetectable” means for you? Let us know!
Zachary Barnett (photo: Mitchell Gold + Bob Williams)
Derek Brocklehurst, RN (photo: San Francisco AIDS Foundation)