Guillermo Chacón is the president of the Latino Commission on AIDS (LCOA), a national HIV group based in New York City, whose slogan is “Unidos podemos” or “Together we can.” Previously, he was LCOA vice president for years until he took the helm in 2009 after the death of LCOA founder Dennis deLeon.
Chacón shares the cultural and structural challenges Latinos still face in the fight against HIV/AIDS, the opportunities and concerns for Latinos living with HIV/AIDS as the Affordable Care Act (ACA) is implemented, the ongoing work of LCOA and his hopes for its future.
What are the barriers to lowering HIV rates among Latinos?
Latinos are the fastest growing minority in the United States, but every single health indicator is very bad, including HIV. Latinos are considered “late testers” for HIV—many Latinos develop AIDS in less than a year after testing positive for the virus. The stigma associated with testing and knowing your status is a huge wall.
Religion is a big deal. There is a big difference between Catholic and Pentecostal congregations. We are open on many social issues and conservative on other social issues. Latino leaders need to take more ownership of homophobia across the community.
Immigration status also is a concern for millions of Latinos. Many families have kids that are citizens and other members who are undocumented. If someone is dealing with a chronic condition like HIV in such a mixed family, it’s complicated.
Health departments don’t know Latinos. They believe we are monolithic, but the truth is contrary. Many providers fail to understand these dynamics. You have foreign-born Latinos and U.S.-born Latinos. That alone is a challenge. Now add to that list countries of origin, cultural identities and norms.
There also are transnational challenges. Immigrants from Latin America will often travel to their country of origin. Let’s look at Honduras, which is the country most affected by HIV in Central America. You might not have risk behaviors for HIV in North Carolina, which has a large Honduran population, but you might [have them] back in Honduras.
Let’s talk about your programs. Tell us about Latinos in the Deep South.
Dennis deLeon established the program in 2007. His vision was to make visible something invisible—Latinos are in Alabama, Louisiana, Mississippi, Georgia, North Carolina, South Carolina and Tennessee, and they have HIV-related needs. We’ve been building statewide networks to bring information to providers and health departments.
Last year we opened a satellite office in North Carolina. One of our key initiatives in the Deep South is the Dennis deLeon Sustainable Leadership Institute. The program enhances the leadership skills of emerging leaders in the HIV/AIDS community. We need to prepare individuals to take leadership positions. People don’t drop from the sky.
What is the Sharing Stories, Creating Hope program?
Supported by [the pharmaceuticals company] Merck, it’s a series of videos featuring stories of Latinos with HIV. The videos, which are in Spanish and English, profile people from Puerto Rico, Florida, New York, the South and the West. We profile all kinds of people, including straight, gay and lesbian.
The videos give providers tools to overcome barriers to effective HIV care for Latinos, especially connecting to care. We also profile providers who are willing to connect with their patients. We are beginning to collect data to evaluate the program.
What awareness days does your organization promote?
We have two national awareness days. National Latino AIDS Awareness Day is October 15. We picked that date because it’s the last day of Hispanic Heritage Month, which starts September 15. Activities run throughout the month. For the last several years we have been organizing a related operational briefing in Washington, DC.
The other awareness day is National Hispanic Hepatitis Awareness Day, which is held May 15. Up to 20 percent of the 5 million people living with hepatitis B and C are Latinos. We also know that many people with HIV are coinfected with hepatitis. So it made sense for us to start this new awareness day.
How will ACA affect Latinos with HIV?
I’m very concerned. Even though health care reform is the law of the land, the Supreme Court decided the expansion of Medicaid will be state by state and territory by territory. When you look at where Latinos are, almost the majority are in the West, between California and Texas. California will implement Medicaid expansion, but Texas will not.
Even in New York, which is on a fast track to begin to enroll people as of October 1 into Medicaid expansion, there is a question about how many Latinos with HIV will be involved in the expansion. Most of the people in charge of expanding Medicaid don’t know too much about HIV/AIDS. They have been dealing with other issues.
Almost half of people with HIV in regular care already receive Medicaid. As Medicaid expands, the question is what will be the future of the Ryan White program [the federal program responsible for distributing funds for HIV/AIDS care]. We need to ensure that Ryan White will stay for the long run.
How did you get involved in HIV work?
I was working in San Francisco at a community center in 1988 when Wilfredo, a young volunteer at the agency, told me he wasn’t coming back. He decided to work with the gay community in El Salvador, where he was born. I also was born in El Salvador, so we had a connection. He died due to AIDS complications.
Our agency began to do more HIV testing and was recognized with an award for educating the community about the virus. Back then I also was very involved in projects promoting a peaceful solution to the Salvadorian civil war, which is when I first met Dennis deLeon. He was a human rights commissioner for New York City Mayor David Dinkins.
Without knowing Dennis was a board member, I worked as a consultant for the Latino Commission on AIDS in 1993 for the founding executive director Sandra Estepa. I left because my contract was up, but in 1995 Dennis told me he was running the commission and wanted my help. I spoke with him on a Wednesday and I started working for him that following Monday.
What is it like being a straight ally?
People might think that I’m gay, but for me it’s a compliment. When I worked with Dennis, people described us as the perfect duo—Dennis as an HIV-positive gay man born in the United States and me as an HIV-negative straight man born outside of the United States.
As chair of the board of the New York Immigration Coalition, for example, I’m able to be a good ambassador to educate and challenge people about HIV and homophobia. The best ways we have to defuse these things are by example and by changing behavior.
What are some future challenges?
We cannot just focus on HIV—we have to add hepatitis to our priorities, plus access to health care and eliminating health disparities. We need to help get immigration reform passed and help with implementation of health care reform.
In the long term, I would like to partner with organizations across the continents from Chile to Canada that deal with Latinos affected by HIV/AIDS. I also would like to help build an organization that will deal with Latino health issues nationwide and in the territories, especially in Puerto Rico, which is heavily affected by AIDS and homophobia.