November 26, 2013
For people living with HIV, getting to an undetectable viral load is a key goal for good health and to reduce the risk of passing the virus on to others. It's a win-win -- but how do we talk about it? How do people in different contexts understand "undetectable" and use it in their own lives?
BETA put these questions to Blue Williams, program manager for San Francisco AIDS Foundation's DREAAM Project (Determined to Respect and Encourage African-American Men), and Micah Lubensky, PhD, community development manager for the foundation's Black Brothers Esteem program.
Both programs are for African-American gay and bisexual men -- a population that is disproportionately affected by HIV and AIDS, with more new infections and more AIDS diagnoses than their counterparts from other ethnicities. DREAAM and Black Brothers Esteem (BBE) work to address these inequities through outreach, HIV testing, case management, workshops, social events, support groups, and other activities to strengthen communities and empower African-American gay and bi men of all ages to get the HIV prevention tools, care, and knowledge they need to thrive and protect themselves and their partners.
As the following Q&A shows, undetectable viral load -- and talking about what it means and doesn't mean -- has a vitally important role to play in the health of individuals and their communities.
What does undetectable viral load mean to Black Brothers Esteem participants who are living with HIV, and how do you talk about it?
Micah Lubensky: Folks know that when they get to undetectable, it's a very good thing. Part of the culture of BBE's Phoenix Rising drop-in group is talking holistically about your health. When folks get their latest labs back and find out they're undetectable, they announce it to the group -- and the whole crowd applauds!
They're proud of being undetectable. There is a value given to it that's reflected back by the group -- it's a norm. And that's something we promote with BBE: people getting comfortable saying, "I'm on meds. I'm in care. I'm undetectable."
What about men who participate in the DREAAM Project?
Blue Williams: Our program is newer, the guys are younger, and the culture is very different. For a lot of the young men in DREAAM, in the communities in which they live, HIV is stigmatized, so most folks don't like to talk about their HIV status, let alone their viral load.
One guy who does talk about his status said that his doctor told him he was undetectable -- so he thought he didn't have HIV anymore. Unfortunately, I've heard that from more young men of color in the last year and a half than I've ever heard before. Recently I counseled a couple of young folks who got tested just because their friends were doing it, and they were completely surprised that they tested positive again. They thought their undetectable viral load meant they didn't have HIV anymore.
Something I think we need to encourage HIV clinicians to do is not just ask their patients, "Do you understand?" but instead ask, "In your own words, can you explain to me what I just told you?" Because there's obviously a communication gap. Even just having clinicians say, "'Undetectable' doesn't mean 'cured,'" -- that could go a long way.
Micah: Recently, we did broader outreach to bring folks in for testing, and we also had some folks who were completely new to BBE test HIV positive and tell us, "I just wanted to see if I still had it, because I was told I was undetectable." So this misperception is not just an age-related thing with young guys in DREAAM; most of the folks connecting with BBE are between 40 and 60.
How do you talk about "undetectable" as part of HIV risk reduction?
Micah: Our in-depth workshops -- "Healthy Relationships" and "Many Men, Many Voices" -- provide a guaranteed, structured opportunity to talk about sexual risk reduction, and people disclose things they do beyond the "ABCs" [abstinence, being monogamous, and using condoms]. That said, discussions around sexual risk reduction can happen anytime in BBE, and they do come up spontaneously.
Condom fatigue is very real, and some people disclose, "Well, I'm undetectable, and I feel like that gives me a way of worrying less about having sex without condoms." They talk about multiple strategies they use -- having more oral sex, or more manual sex, or bottoming instead of topping -- and having an undetectable viral load is one of them.
I always remind folks, when you're talking about "undetectable," you're talking about the quantity of virus in a certain volume of blood. And I ask, "When you are having sex, what is the fluid that may carry the virus?" And everyone says, "Semen!" I ask, "Do they check your semen when you have a viral load test?" And they all say, "No!" I even showed them a research article about detectable levels of HIV in rectal secretions. So there is awareness that there isn't necessarily a one-to-one correlation there.
And I always start these conversations by saying, "I am sex positive. I'm not giving you this information to make you stop having sex, or to cover yourself in a plastic sheet and never touch people! But you need to be informed." That's how I talk about undetectable viral load with BBE every time it comes up in our discussions of risk reduction.
Do people feel ashamed if they're not using condoms -- and does "being undetectable" have a role to play there?
Micah: The message that's been out for 30-some-odd years is that you use a condom or you're bad. So yes, sex without condoms is stigmatized.
Some people in BBE will stand at the top of the tallest mountain and shout, "USE A CONDOM EVERY TIME!" In one way, it's good to have a cheerleader saying condoms are important; at the same time, we know that not everybody is going to be able to use condoms, or want to use condoms, or have the self-efficacy to use condoms every time. There's a risk context: alcohol and other substances, survival sex, fear ...
Blue: I recently talked with two different people who'd had condomless sex in the past few weeks and were saying, "I know it's bad." I really tried to validate for them that they weren't bad people, and I asked them to think about what was going on in that moment. They both said they consistently use condoms, so my question was, "What was different this time?"
Because a lot of the time, we just want connection. We want to feel needed, and wanted, and like someone is attracted to us -- and that's valid! It doesn't make you bad, it makes you human.
Micah: I always remind people, "I want you to have a healthy sex life. Condoms are one way to do it, but that's not the only way." I remind folks that there are other options to reduce risk -- like having an undetectable viral load, being the receptive partner [if HIV positive], having oral sex or manual sex -- so they don't feel like they are going to have a finger wagged at them for saying they didn't use a condom every time.
It sounds like they could also feel proud that, by taking care of their own health and having an undetectable viral load, they are also helping protect their partners.
Micah: Yes. That is something they talk about and that we validate. It's part of the culture of how we talk about risk reduction at BBE.
What would you say is the most important thing men in DREAAM and BBE need to understand about undetectable viral load?
Blue: That it's attainable. That's it's not out of reach. It's attainable if they are in a space where they can get into care, see their doctor regularly, and take their meds. It's not going to be an easy road; you have to work at it like anything else, but it's an attainable goal.
Micah: I like that; that's important. Another thing that's important for the BBE folks to understand is the health benefits that are correlated. If you have an undetectable HIV viral load, what does that mean for you if you're exposed to hepatitis? What does it mean for HPV [human papillomavirus] infection? What does it mean for your cardiovascular health?
There are so many ways in which HIV can impact our immune systems and have a systemic effect on our lives. If you can get your viral load undetectable, how will that affect other parts of your health? How does being undetectable affect your mental health? How does your viral load affect any meds you take for your mental health, or any ways you self-treat?
And what will it mean for the amount of virus in your semen? If there were more research about the correlation between viral load in blood and semen, and people could understand that getting to undetectable brings all these other benefits with it, that would give them a hell of a reason to work on getting their viral load undetectable.
Blue: Yeah, we have a guy who just got back on his HIV meds, and he said, "Wow, I feel better!"
Micah: Right! This discussion of all the potential benefits of undetectable viral load really speaks to the fact that the work Blue and I love to do is holistic by nature. Through and through, at the core, it is holistic health -- because the people we work with do not think about HIV as the sole thing going on in their lives.
The HIV public health approach that we all currently "live" in is grounded in the biomedical, and yet people have whole, complex lives within systems that are correlated and connected. We have to understand how HIV works in their system, in their community. The way we talk about HIV prevention and care needs to be holistic to be powerful.
To learn more and connect with Black Brothers Esteem, visit the group online or call 415-487-8018. Curious about the DREAAM Project? Call 415-575-0150 (ext. 273) to find out more and get involved.