Talking low viral load to person living with HIV!

How Do You Talk About It? "Undetectable" Among African-American Gay Men

From BETA

November 26, 2013

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Blue Williams and Micah Lubensky

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 viruson 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 BrothersEsteem (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'tmean -- has a vitally important role to play in the health of individuals and their communities.

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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 theculture 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.