Awards of Courage

Moisés Agosto-Rosario

Honoring with Pride 2002 Honoree
 

Moisés Agosto-Rosario is a longtime treatment advocate and educator for people living with HIV and AIDS. A frequent public speaker and writer in both English and Spanish, Mr. Agosto-Rosario has played a crucial role in ensuring that communities of color have equal access to care, treatment, and lifesaving information and has won numerous awards for his work with the HIV community. He is currently Vice President of Programs for Community Access, part of the Sciens Worldwide Medical Education Network. 

From 1993 to 1998, Mr. Agosto-Rosario served as Director of Research and Treatment Education and Advocacy for the National Minority AIDS Council (NMAC) in Washington, D.C., where he was responsible for the development, implementation, and management of all treatment education components for NMAC’s numerous educational programs. In addition, Mr. Agosto-Rosario oversaw all advocacy activities related to treatment access and AIDS biomedical research and founded the National AIDS Treatment Advocates Forum, an important conference organized annually by NMAC. Prior to joining NMAC, Mr. Agosto-Rosario served as the editor of SIDA Ahora, the Spanish publication of the People with AIDS Coalition of New York, and was an active member of ACT UP. 

Mr. Agosto-Rosario has served on numerous community, industry, and government advisory boards, including the Health and Human Services National Task Force on AIDS Drug Development; the board of the Forum for Collaborative AIDS Research; and the ACTG Community Constituency Group. At present, he is co-chair of the Ad Hoc Minority Research Group of the Office of AIDS Research Advisory Council and is a member of the AIDS Research Advisory Committee of the National Institute of Allergy and Infectious Diseases. He sits on the Treatment Advisory Board of NMAC and on the board of directors of Gay Men’s Health Crisis (GMHC). 

Mr. Agosto-Rosario graduated in 1988 from the University of Puerto Rico in Rio Piedras, Puerto Rico, with a B.A. in Literature and Education. Currently residing in Manhattan, Mr. Agosto-Rosario has known he is HIV-positive since 1987. 

Interview

You have been involved in the fight against AIDS from the beginning. Can you talk about how you first got involved?

When I tested positive in Puerto Rico in 1986, there were no support services at all. So a therapist and I created the first support group for gay men who were HIV-positive. Soon after, I moved to New York for graduate school and also to look for treatment. A friend told me about a group called ACT UP, and that they were looking for people who could help them with translations. I went to the first meeting, and it was really great—almost like a religious experience. There I was, this Puerto Rican kid who had just come to the city and was adjusting to the culture and figuring out how to deal with being HIV-positive in the big city. And here was a room full of young guys with this fire in their heart who were trying to do something about it—not just for their own lives, but for the community. This was a turn-on for me, and there was no going back.

At ACT UP I started to do translations for posters and materials being developed for demonstrations. We started a committee within ACT UP to make sure that information was disseminated in Spanish to the Latino community. One of the things that caught my attention during this time was the treatment and data committee, one of the most powerful committees within ACT UP. I quickly realized that a lot of information on clinical research was out there, and that those who were informed about the latest in clinical trials had a better chance of surviving, a better chance of accessing medications that were not yet approved but probably could extend their lives.

A bulb went on in my head that this should not just happen here, but in other places as well. I was trying to figure out what could be done in the context of communities of color. In terms of AIDS health care, I was blown away by the disparities according to race. And I felt that we had to figure out a way to work together, to make sure that the same skills and access that the [white] middle class had would be transferred to other groups. One of the barriers was that the treatment information that was available was in highly medical or technical terms that were not that easy to understand for people who didn't have that kind of background. So Ken Fornatado and I eventually started the AIDS Treatment Data Network to fill this gap.

I became more and more passionate about people having access to treatment information. There were a couple of organizations—Project Inform and Gay Men's Health Crisis—that were starting to provide information about treatment in an accessible way, but there was absolutely nothing in communities of color. In 1993, I moved to Washington to start the National Minority AIDS Council Treatment Education and Advocacy Program. We were able to develop a program that was comprehensive enough to provide information about treatment to communities of color and also provide visibility and give a voice to these communities in the research field.

One of the things that I am most proud of is starting the National AIDS Treatment Advocates Forum, now called the North American AIDS Treatment Action Forum (NATAF). We created a forum to train future treatment educators around the country, to give them the tools to go back to their community-based organizations and teach people in the community how to be advocates. Today, NATAF is an international forum for treatment advocates.

How has the epidemic changed the gay and lesbian community, either for the better or the worse?

I'm very concerned about how the gay and lesbian community has been affected by the epidemic. One of the things I'm most proud of is how we organized ourselves in the beginning and took care of each other, fought for each other. There was this sense of camaraderie, even though we were surrounded by so much pain. Some of us were infected, and some affected, but the response of the gay and lesbian community was absolutely amazing. And I think it's been a response that still resonates and has impacted the whole notion of health care. For example, before AIDS you had never heard of patients demonstrating and engaging in civil disobedience for a health cause. AIDS activists from the gay community were the first ones to put their bodies on the line to make health care an issue of human rights, and I think communities of color have learned from the initiatives of the gay and lesbian communities.

Now, after 20 years of HIV/AIDS, even though we have been consistent about our responses to the epidemic, somehow the sense of camaraderie and urgency has been lost. The turning point was in 1996, when protease inhibitors were introduced. Suddenly we had hope and thought that the epidemic was going to be over soon. There was an assumption that we were moving toward a more manageable chronic disease, and away from a death sentence. HAART is helping people live longer, but at the same time has created a false sense of hope. We aren't as furious or determined as we were at the beginning of the epidemic.

As someone's who is HIV-positive, how has working in the field affected you personally?

When I found out I was positive, I was very young—in my early twenties. I felt I had to make sure my life was meaningful, that I had to do something to contribute to the epidemic. I had to get involved somehow in ending the pain, ending the suffering, and helping others. And in a way, I saw this as a way to help myself, to cope with living with this disease. In 1996, I got very sick and was one of those that was expected to die. I had zero T cells, my parents came, it was that whole deal. And just at that point, protease inhibitors hit the market and everything turned around. At that point I thought I probably should do what my friends who had died would want me to do with my life, to take it where I left it and continue on—yes, stay involved in the AIDS movement, but not make my life about just AIDS. But that didn't last very long....Now that I see how infection rates keep going up, and prevention is falling through the cracks, I feel this sense of responsibility coming back. Sometimes people say, well, you're paying your dues. But it's not about paying your dues, because it's not about me. Its' really about the whole community.

Can you talk about some of the strategies that can be used to reach African American and Latino communities?

Every community has their own background or history, and in the context of Latinos and African Americans—minority communities—the strategies have to be different. And they have to be different because they have to first empower communities that have always felt left behind, with little access to health care. But another challenge is that these communities do not trust the system. Mistrust of the medical establishment is rooted within this community, with the legacy of Tuskegee. So we are not just educating this community, we are trying to change their mindset about the epidemic—an epidemic that started out being stigmatized as a homosexual disease. It is a double challenge. For the outside world, we have to explain that people of color need to be focused on; we need to develop educational programs and outreach programs that are meaningful and relate to the way people lead their lives. It's not just language, but the way you do it, the way you reach these communities that is important. And within communities of color, the tactic is to make sure they understand that it is not just a disease that is affecting gay men, it is a disease that affects everybody. So we need to break the stigma on both sides, and at the same time make it possible for leaders in communities of color to take a more active role in outreach and education.

Looking to the future, what would you ask of the gay and lesbian community with regard to the fight against AIDS. Are there responsibilities that the community has in this battle?

I'm going to answer this for myself, rather than saying, "The community should...." As a gay man in my late thirties, I feel I have a big responsibility toward the people who have died from this epidemic—those who put their bodies on the line, who were doing political work or participating in clinical trials. If I'm still alive, I have a responsibility to make sure we keep up the fight—because they fought for me, and I fought with them. That's one responsibility. The second responsibility is to the next generation of gay men and lesbians that are going to have to live with this disease. My responsibility to them is to tell them my story, to tell them what we went through, and to tell them what we did and what they could do to have a better life—to live healthier and happier. So, if you're going to transfer how I feel to how the community should feel, I think we do have a big responsibility to those in the past who fought for us and to those in the future who will fight for us as a community.