Since its founding in 1990, the Latino Commission on AIDS has become the largest organization in the U.S. advocating for the health needs of the Latino community in response to the HIV/AIDS epidemic. Also known as Latino AIDS, the commission works with community organizations in developing HIV education, prevention programs, and capacity building. The commission, which began in New York City, now serves Latino communities in more than 40 states and Puerto Rico. Guillermo Chacón has been president of Latino AIDS since 2009.
JEFF BERRY: What do you see as some of the broader issues facing the Latino community?
GUILLERMO CHACÓN: First of all, it’s extremely concerning that new HIV infections have increased among young black MSM [men who have sex with men] and young Latino MSM. It’s around 21%, for Latinos, of new HIV infections in the latest data. We are always concerned about the effectiveness of our response. And when I say our response, it’s the communal one. It’s the CDC, it’s the community. One particular segment we recognize is the transgender community, which we need to understand and engage because they are one of the most challenging that we face. That’s something that has been reported, but it’s not a national commitment. I use “trans” because it’s my understanding that there are striations and variances in the community. Someone came to me and said, “We prefer ‘trans.’ ”
But also I’m sure you know that when we look at Latinos in general we also need to identify women who are still being impacted. I always try to be careful and mindful about explaining to many community-based organizations throughout the U.S. that the reason why so much attention focuses on women is because of new HIV infections among this population. Now, of equal concern for us is the level of homophobia that I believe represents a major challenge for our community across the board. The stigma of homophobia and transphobia is across all communities and all institutions.
We also believe when you look at the number of people that we know who are living with HIV that are connected to care, we don’t have the number that would make us more hopeful about the viral load suppression that we would like to see achieved by every individual in the United States and the territories. That is also another big challenge. I think that we need to review our prevention strategy. We know that low viral suppression equals less transmission.
JB: What barriers and challenges do you see facing Latinos specifically?
GC: In cities like New York, clinical providers, case managers, and health navigators that are not Hispanic or Latino don’t understand who we are. I’m talking more in general in terms of the diversity of the countries of origin. Don’t forget that when we talk about Hispanics and Latinos in the United States, it’s a significant segment of us that are foreign born. It’s a large number that are U.S. born, but the cultural dynamics between those two are significantly different. To understand where you came from will help me as a provider to either work with you to reduce risk behaviors or to stay in care.
HIV testing is another good example. I’m sure you know that Hispanics are labeled as late testers for HIV. Many times when I go throughout the U.S.—we describe ourselves as a local, regional, and national organization—and I go to Texas or Georgia or Los Angeles, and outside of New York City, throughout the state of New York, that is mostly rural, I’m always shocked when people say that most of their testing is only done Monday through Friday from 10 to 6. You and I know that if you are a working person, you may not have the ability to say, “Oh, by the way, tomorrow I’m going to work from home.” That issue is also connected to being labeled as a late tester and the translation of that is in many cases, in less than a year after you receive that HIV diagnosis you will also receive an AIDS diagnosis. That’s because by the time you test, the HIV has been with you for a little while. We know that one thing that we cannot allow is somebody to live with HIV for a long time without being treated, because that translates into serious damage of your immune system. It’s almost impossible to reverse.
JB: What about the immigrant community? There’s probably a unique set of challenges.
GC: Another huge barrier is a giant segment that is undocumented. Of course there’s a lot of misinformation that is broadcast every day in mainstream media that undocumenteds are here to take over or to use or abuse social services. Anybody in health and human services knows that by law you cannot access a variety of social services, because it’s part of the requirement to access those services to prove your immigration status in this country. But when we talk about those folks who are living with HIV without an immigration status, it’s getting worse. I tell people it makes it very difficult when we talk with partners throughout the U.S. because they tell us, “We were doing a lot of work in these three counties within the state but ICE [Immigration and Customs Enforcement],” the federal agency under Homeland Security in charge of implementing these policies, raiding workplaces and deporting people, “was creating fear in our communities.” And again, we understand that this is one of the big headaches in our broken immigration system.
JB: I’m sure a lot of the stigma stems from fear, but it’s fear that’s based in reality.
I like to go to a lot of places that provide services, I just like to see the dynamics and interactions. Let’s say I’m a trans person and I walk into this clinic. I try to see how the person in the clinic interacts with the individuals who are coming in. The one thing that I always react to immediately is when I see that somebody is not welcomed or is not offered a glass of water, even at the Latino Commission on AIDS. The level of dignity and respect and offering a free space where the person would feel welcome—that to me is many times the biggest failure in perpetuating the level of stigmatization that our folks face every day. I’m talking about Hispanics/Latinos that we know would feel more comfortable to move forward and seek services or to turn around and walk away. I think we cannot afford that, when we talk about HIV in particular or an STI or any other chronic condition, because sometimes there’s just a tiny window of opportunity that we can take advantage of but we may miss that moment. Also, I want to highlight another big challenge that we have. When was the last time that you saw a congressman or a congresswoman of Hispanic background talking in a very passionate way about the urgent need to address HIV, or the stigma associated with HIV? Or the Hispanic civic leader for a major local, regional, or national Hispanic organization? I’m saying we need a specific conversation, because one of the best ways to address the stigma is through leadership, meaning that you need to put a face on the issue. You need to address stigma and begin to put forth policies and rules and figures to begin to remove that stigma, beginning with you and your own family and then the institutions that you represent and that you have some type of influence in.
JB: No small feat.
GC: I know. It’s sad. Especially with HIV in the United States and the territories, where we have all the tools to ensure that everybody that is living with HIV could potentially achieve viral suppression. And if we have the tools and if we can prevent the spread of HIV, why would we not do our very, very best to make the difference and achieve what is known as the end of AIDS or achieve an AIDS-free generation? These are the goals that I’m very proud to tell you that in New York State the Latino Commission was deeply involved in developing. But the leadership of our governor and our mayor in New York City made a difference. You cannot expect to do something if the individuals that have those leadership positions will not take those goals to the finish line.
I want to highlight one thing, and it’s Puerto Rico, which unfortunately has been in the news because of the horrible financial crisis. But the problem is when you are facing over 70 billion dollars of national debt, everything will suffer, in terms of your priorities, in terms of your budget. Over 20,000 people are living with HIV on the tiny, tiny island of Puerto Rico. There has been a very good response from CMS [Centers for Medicare and Medicaid Services], from CDC, but many times you will see reports from institutions in the United States talking about the state of HIV in the United States, and you realize they’re talking about the 50 states. They do not highlight the territories. To me, that is irresponsible, because the territories belong to the United States. From a public health perspective we need to recognize that.
JB: You recently helped launch an anti-stigma campaign, “Podemos Detener el VIH .” Can you tell us more about that?
GC: We’re convinced that stigma is a major barrier and we need to create strategies to begin to approach and work with different institutions within the Hispanic/ Latino community, like the National Hispanic Medical Association, the National Association of Hispanic Nurses, and the Latino Social Workers Organization. The best way to begin to break a stigma is to begin to educate yourself about something that you don’t know anything about. It’s even better to have a direct experience, like when you start to know more clients and members of our communities, you realize that they have the same aspirations and many of the same challenges as any other segment that we have. And I always remind my trans sisters, and the trans community in general, that they have to be in a strategy from their perspective to engage the community as a whole. I’m always concerned when groups say, “Oh, we’re doing a stigma reduction campaign,” and what are they doing? “Oh, we made a poster.” I say I think posters help, but we need something more comprehensive and also more tailored to where some institutions or organizations are. Now the question is, the medical associations, state by state, must be a target for each of us. If we have an ethnic or racial association, even better. And we cannot ignore that media creates news and we need to engage them. Also when we talk about stigma we need the academic institutions to work with some of those communities that have been suffering for so many years a great deal of stigma and isolation. They have to be part of a better understanding of which strategy would help us create a more welcoming setting for individuals to feel more comfortable and able to access whatever they need.
I think that New York State is a good lab right now with the ending of the epidemic, with the [New York State’s Blueprint to End the AIDS Epidemic] that was adopted by the governor being fully implemented throughout the state. And one component of that is stigma reduction. And when I spoke about leadership, it’s very important to realize that it didn’t drop from the sky. There was an amazing unity among communitybased organizations that came together in one voice to talk to the governor and say, “We need your leadership.” And the governor was ready because, again, a good leader is a leader that will listen, will reflect, and immediately will act and move in the right direction.
JB: It’s a great blueprint, kudos on that. Is there anything else that you wanted to talk about?
GC: I also want to highlight that people interested in better understanding and responding to the Hispanic/ Latino community, number one is to begin to connect with our communities, our organizations and number two, the Hispanic/Latino organizations throughout the U.S. and the territories need to begin to work more to connect with our state authorities. Many people want to better understand who we are as a community, because we are one of the fastest growing populations. In age, we are one of the youngest segments of the U.S. population. We just opened in New York City a new LGBTQS center and the “S” stands for “straight,” because we believe that we need to engage our straight brothers and sisters, to join and to respect all of us. But the center especially targets young Latino MSM or Latino gay men to not only be a part of the center but also to be leaders for their health, including the prevention of HIV and STIs.
It is important for us to be in the history books, what we did to end the epidemic in our lifetime. I think that’s the aspiration all of us can have.