When We Talk About HIV, Who Are We Not Talking About Enough?

Which communities do you think don't get their due share of attention when it comes to HIV awareness, policy, prevention and/or care? Since HIV thrives on silence, it is essential to find ways to address the impact of the epidemic among populations that get left out of conversations -- and subsequently funding, programming, media coverage, activism and more -- around HIV. We asked a wide range of HIV/AIDS community members which groups they saw falling through the cracks.

Katherine Cantrell

City of Austin Health and Human Services, Austin, Texas

I would say communities that are non-identifying -- people who don't identify as MSM [men who have sex with men] or transgender or gay or lesbian. We're really focused ontargeted populations and targeted testing, so those non-identifying populations get overlooked. There are big "buzz words" like black MSM and youth, and so I feel like those are the things that people focus on -- but the non-identifying folks get left behind.

Ruth Deramus

Activist, Alabama

Living in the U.S. South, the community I think we are really excluding a lot is the rural community. I think there are a lot of people in the rural community that are not even aware that there is a virus. They're not getting the testing they need; and naturally, if they're notgetting tested and they're not aware that they're infected, they're not getting the treatment.

Matt Ignacio National Native American AIDS Prevention Center, Denver Specifically, our organization works with American Indian/Alaskan Native/Native Hawaiian populations that are infected and affected by HIV. There was a recent New York Times article about one particular tribe that's had a 400 percent increase in HIV rates over the last 12 years -- in part because of better surveillance, but we need to continue talking about and addressing prevention needs for indigenous populations that live in rural/reservation communities. Part of this is inviting people to the table to speak, without having an agenda set -- there's nothing worse than being invited to a meeting and the agenda's all set for you, and you don’t really have a voice -- so creating a real space for people to speak up and address key issues. Part of it is also on Native people to stand up and speak about HIV. I think we need more of that, and I think when we have visible Native people who aren't afraid to speak up, it makes the work that much easier.

Theodore Kerr

Visual AIDS, New York City

I have two answers. First, women. It doesn't matter if a woman is aboriginal, Asian, black, brown, drug injecting, gay, gender non-conforming, homeless, imprisoned, Latina, married, poor, pregnant, queer, rich, senior, straight, street-involved, trans, white, and/or otherwise, she will beoverlooked in the conversation around AIDS. A deadly second classing. Working throughculture with women all over the world, Jessica Whitbread, current global chair of the International Community of Women Living with HIV/AIDS, is changing this.

Second, systems and structures. Too oftenAIDS talk revolves around individuals and their behaviors, or communities and their behaviors, meanwhile going under-discussed is the crushing role the state, corporations and cultural norms play on our ability to care for ourselves and each other. This is something that I learned from J. Bob Alotta of the Astraea Lesbian Foundation for Justice, and Dean Spade.

Steven-Emmanuel Martinez

AVAC: Global Advocacy for HIV Prevention, New York City

I think we're not talking enough about immigrant communities. I was just talking to this woman from this organization called Farmworker Justice, which is located in Washington, D.C. And Farmworker Justice works specifically in rural communities, particularly with Latino immigrants in rural communities, and how Latino immigrants are being infected with HIV got me thinking about how we are not paying attention to the needs of immigrants. Some of them come here without a dime, they may be forced into sex work, men come here months ahead of their wives and children and we have this "machismo" culture, so they might have relations with other women.

Eddie Matos

Newark Beth Israel Medical Center, Newark, N.J.

In my community, it's Latinas. There is no mention of them, because the services that are out there are geared toward MSM and African-American women. They don't mention anything about Latinas, and we don't target the Latino population. I believe it's because of the high rate of positives among African-American women, but no one is seeing that this has become a problem in the Latina community. Because they don't have statistics that prove that there is a high rate -- because there's no testing available to them, there's no information available to them -- programs are not culturally sensitive to Latinos.

Alan McCord

Project Inform, San Francisco

I think we need to look at where the epidemic is the most pronounced; and young men of color are certainly at the top of the list, with African-American youth and Latino youth bearing the burden of infections, especially in the U.S. South and in larger cities all over the country.

I think we really need to focus an awful lot of energy in those communities. We also need to revisit talking about HIV prevention in men who are 50 years of age and older. I think that condom fatigue is an issue, not only for younger, but especially for older MSM, and I think that's something that's not talked about enough. There are opportunities to talk about pre-exposure prophylaxis, or PrEP, and other messaging along the way to help prevent HIV.

Ian Morton

UC San Diego AIDS Research Institute, San Diego

Honestly, I think we're not talking enough about the Asian and Pacific Islander groups. I think when it comes to the transmission of HIV and -- one of my own personal things -- LGBT communities and MSM communities, we're not talking about Asian and Pacific Islander populations.

Antwan Nicholson

My Brother's Keeper, Inc., Jackson, Miss.

I think the community we don't talk about the most is the heterosexual community. We always talk about them being a part of this disease and a part of the numbers; but we don't focus on them enough, and we don't educate them enough or get the informationout to them. We may feel like we don't need to worry about them, because HIV-related problems are bigger in other areas. Instead, let's look at heterosexuals and see where we can give them the education, give them the knowledge, as well as other groups. That way they'll be equipped with the knowledge, they'll know their status, and they'll be able to spread that information to other people.

Wayne Smith

Samaritan Ministry, Knoxville, Tenn.

The one that just stands out is African-American MSM, and MSM in general -- especially in the religious community. That'ssomething we just don’t want to deal with, so it's harder to get conversations started around gay and bisexual men.

Sabina Strat

Philadelphia Center, Shreveport, La.

I think rural communities are a different kind of community that need a different approach in order to have them listen to information about HIV -- and then have them communicate what they need to know about it.

Cedric Sturdevant

My Brother's Keeper, Inc., Jackson, Miss.

I think we're not talking enough about the people that are living with HIV. We're talking about preventive measures, we're talking about testing; we're beginning to talk abouttreatment as prevention, but we're still not talking enough about how to help the peoplethat are living with HIV to deal with the shame that they still may be going through, and some of the stigma they may face. I think there needs to be more empowerment things going on surrounding people living with HIV. We talk about wanting them to come out about their HIV status -- but are we actually talking about what can be done to help them to come out?

Jacquelyn Williams

Newark Beth Israel Medical Center, Newark, N.J.

The white groups, Caucasians. Because they don't live in the ghettoes.

Brandon Wollerson

Travis County Integral Care, Austin, Texas

I think the communities that we are missing right now are those older than 50 -- the aging population. I think that's something that we're missing because the concern is that we need to be focused on the whole picture and not just the youth. The concern is that the pendulum is swinging back the other way toward youth regarding HIV, so we're chasing after these targets, but we're missing these other groups. How do we make sure we're adequately addressing that people feel part of the conversation?