How Do You Talk About It? A Community Health Promoter Discusses "Undetectable"
December 13, 2013
Accounting for 20% of new HIV infections while representing only 16% of the total United States population, Latinos and Latinas are disproportionately burdened by HIV. As a trained promotora de salud (community health promoter) with San Francisco AIDS Foundation's Latino Programs, Norma Azúcar devotes her time and energy to educating Latinas and Latinos in our community about HIV testing, navigating health care systems, and living well with HIV -- including suppressing the virus to "undetectable" levels.
With HIV so heavily stigmatized, talking about viral load (and what it means for your health and your partner) can be a challenge. How does Norma do it? Find out in this frank Q&A.
As a promotora, how do you talk about "undetectable" in the Latino community?
There is a lot of misinformation. People think having an undetectable viral load means that they're cured. I explain to them that it means there's less than 50 copies of the virus per milliliter of their blood (or even 20 copies, for more sensitive tests). I always stop and clarify what it means, and that there is no cure yet for HIV. "Undetectable" doesn't mean you're cured.
Being undetectable just means you have less copies of the virus in your blood. I explain how that's one of the goals if you're HIV positive: Get on medication and get your viral load down.
I talk with a lot of doctors at Ward 86 [the longtime HIV treatment center at San Francisco General Hospital]. The model here in San Francisco is "hit hard, hit early" so you become undetectable sooner rather than later. Sometimes people in the community tell me, "Well, I have a lot of T-cells, so I can wait." I say, "Wait a minute! Let me tell you how it works." And people listen.
With HIV so stigmatized in many communities, how do you reach people who need to hear about this part of HIV health and HIV risk reduction?
People trust me because they know I'm HIV positive myself; I've been HIV positive since 1998, and I've learned a lot over the years. I attend groups at different agencies and the medical workshops here with Latino Programs. I stay on top of everything, and I let people know about programs here at the foundation. I'm always working to get people to be more informed about HIV.
Also, I used to be addicted to heroin; I have a lot of the same experiences as some of the people I'm talking to in the community. And I'm a woman.
Does being a woman make it easier for you to have these conversations?
It does, because I talk about HIV and health with a lot of women, a lot of mothers. Latinas are having a really hard time not just negotiating condoms but navigating being HIV positive.
Women don't have a lot of time for themselves; it's cultural. Most Latinas take care of everyone else and always put themselves last. So when I talk to women, that's one way I frame it. I ask, "Do you want to see your kids grow up? If you get on medication, you can have a normal life span. But if you don't take care of you, you're not going to be around." And it works. But I have to put it in life-or-death terms: "If you don't take care of yourself, the opportunity for you to have a long life is gone, so you need to get into treatment."
We have to change so much just to get women to even think of themselves -- to go get tested, to go to the doctor and start medications. I tell people, "It's not the death sentence it used to be. You can live with this. I'm still here! If you take care of yourself, you can live a good life in spite of HIV." I use myself as an example. I'm still living.
Do people have questions about being undetectable meaning less risk of passing the virus on to a partner?
They do -- but it's because they think they're cured! So I have to explain that having an undetectable viral load means you're much less likely to transmit HIV. It's not impossible, so I emphasize trying to use condoms. But a lot of women don't negotiate using condoms because their husbands would ask why and might accuse them of sleeping around. The machismo is so horrendous. Too many women have no say in this. We have to change the culture, change people's way of thinking.
I also remind people not to share needles, not even a straw if you're doing blow or a pipe if you're smoking crystal. Just keep them to yourself. It's not just the risk of passing on HIV -- there's also hepatitis C to think about. I always teach safety.
As you mentioned, getting to undetectable is part of taking care of yourself -- and taking care of yourself helps you get to undetectable. How do you help people understand that connection?
Well, adherence is a big part of what I talk about with people. I'm religious about adherence. And I explain that for people who've never been on HIV medications before, there are some really simple regimens with just one pill a day -- it doesn't have to be tough to fit into your life.
I also recommend meditation; I've really been pushing it in the community. In the six months since I started meditating, I've seen a surge of about 125 T-cells. And people in the community see the difference in me: I was walking with a cane before I started meditating. Now the cane is gone, and I have more energy. It's incredible what less stress can do: Your body just starts bouncing back. Twenty minutes in the morning and twenty minutes in the afternoon -- such a simple thing to do for such great benefits.
And I'm an ambassador for programs at the foundation. For example, Latino Programs has something going on every day to promote wellness and a healthy community. On Mondays the group is about health and beauty, we have medical workshops on Tuesdays and Wednesdays, on Thursdays we have our support group, and on Fridays we have a social night with movies and karaoke.
Clients have requested educational programs because they want to learn more about living with HIV, so we started an HIV 101 program; we just had the first meeting, and there was a tremendous response.
And I teach people how to navigate the systems. I guide them on what doors to knock on, and where to find services for people who are HIV positive. I love what I do! I get to help a lot of people.
To learn more about Latino Programs at San Francisco AIDS Foundation, visit online or call 415-487-8000.
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