Leaders Unite on HIV in the Latino Community

By Helen Kao

I was brought up in the south Bronx," says Marina Alvarez, an AIDS advocate and educator. "There were a lot of us, and we were poor. I didn’t know we were poor because there was so much love. In 1983 my brother died of AIDS. It infected his wife, and a year later she died. And now we had the first set of orphans in our family. Despite everything, I saw the love and unity of my family - how we pulled together and took care of my brother and loved him.

"My sister left another set of orphans. My uncle, who is my godfather, lost children to HIV. His son died in a prison hospital of AIDS. His daughter died at the age of 33 and left another orphan child. My uncle wasn’t around to see his daughter die because he died of suffering from watching. Last year we found out my 70-year-old uncle is infected with HIV. And that’s just my family."

Last spring Alvarez told her family’s story to 60 Latino community leaders from across the United States and Puerto Rico who had convened at Harvard University for a summit to address issues associated with the high rate of AIDS among Latinos. She asked them to help her prepare a future for her grandchildren that would be free from the sort of tragedy and loss she has suffered. A campaign called Leading for Life/Unidos Para la Vida was launched at this meeting; it follows the model of a similar effort begun two years earlier to address escalating HIV-infection rates among African Americans.

The rate of HIV infection among Latinos in the United States reflects an increasingly dire situation. Currently, 20 percent of all AIDS cases in the United States occur among Latinos, even though Latinos represent only 11 percent of the total population. The rate of HIV infection among Latino men is 3.5 times greater than the infection rate among white, non-Hispanic men is. Similarly, women and children in the Latino community have rates of infection that are 7 times greater than the rates found among white women and children. If these trends continue, the Harvard AIDS Institute projects that by the year 2003 the percentage of total annual AIDS cases attributable to the Latino population will eclipse the percentage of such cases attributable to the white, non-Hispanic population.

"I watch the news. I watch people talk about wars in other countries and I identify with the feelings of those people," says Alvarez. "I know they have bombs thrown on them. I know they have weapons pointed at them. But we have a weapon that is killing my community. We have to silence this weapon of AIDS, which is killing us."

The Campaign Launch
The aim of the Leading for Life/Unidos Para la Vida campaign is to harness the commitment, resources, and talents of Latino leaders in the arts, business, government, medicine, and religion. "We have to increase the engagement of our community - bankers, lawyers, doctors, everyone across the board," says Mario Cooper, a founder of the Leading for Life/Unidos Para la Vida campaign.

Participants addressed issues such as prevention and education, media, public policy, and diversity and incorporated their decisions in the resolutions and action steps they would like the campaign to implement in the coming year. Participants also issued a summary document, "A Call for Mobilizing the Latino Community," that detailed Leading for Life/Unidos Para la Vida’s goals and plan of action. Summit conveners included the American Red Cross Hispanic HIV/AIDS Education Program, the Centers for Disease Control and Prevention, the Harvard AIDS Institute, the Henry J. Kaiser Family Foundation, the Latino Commission on AIDS, the Mauricio Gastón Institute, and the U.S.–Mexico Border Health Association. The summit was funded by grants from several groups including Ansell Americas, Glaxo Wellcome, and the Levi Strauss Foundation.

Dennis deLeon, president of the Latino Commission on AIDS and a summit convener, saw the meeting as an opportunity for the community to move beyond internal prejudices. "It’s 1998 and we are still acting as though we are a tail on the dog in the response to AIDS. I hope we can move from a reactive to a proactive stance in our community because AIDS is quickly becoming a disease of color. It’s quickly becoming a disease of our own prejudices, a disease of our own lack of warmth toward the gay community and toward drug users. It’s a disease that reflects all of our neglects. I hope today we can move neglect into respect."

A Present and Future Threat
The AIDS epidemic threatens not only the present generation of Latinos but also future generations. By the year 2000, more than one-third of the members of the Latino community will be under the age of 18. With rising rates of HIV infection among all youth, the implications for the Latino community are ominous. "As overwhelming as this epidemic might seem to us right now," says Rafael Campo, a physician at Beth Israel Deaconess Medical Center, a poet, and a summit convener, "even greater devastation faces our next generation of irreplaceable young people whose future should be to lead this country into the next millennium; to take our places in medicine, business, in government; and to share with the world the tremendous brilliance and creativity of our culture."

Crafting a Campaign for a Community
Participants felt that changing these perceptions and overcoming obstacles could best be addressed through prevention and education programs that are culturally appropriate and peer-based. Medical education programs, for example, should include all types of health care providers, not just physicians and nurses. And research on Latino sexuality and behavior should include participation by members of the Latino community on all research, review, and advisory panels.

Participants stressed the need to examine sexuality within the broader context of sexual health, a context that includes negotiation and other skills, decision making, and self-esteem issues. Curricula should be developed to address communications between parents and children and within couples. Health curricula should also include lessons covering substance abuse, needle exchange, condom use, and violence prevention.

To bring this message of prevention and education to as many as possible, participants proposed a media campaign that would target the major cities in the United States that have large Latino populations. Suggestions for this campaign included the development and production of a bilingual film that would deliver HIV prevention messages through Latinos’ personal narratives about family, drugs, and sex. The media effort would also focus on briefing publishers and high-level media professionals about the AIDS epidemic among Latinos and on harnessing their commitment to accurate, fair, and empathetic reporting on the effects of HIV and AIDS in the Latino community.

Ensuring That All Voices Are Heard
The participants re-solved to create a group that would focus on issues of public policy. The group, Latinos Re-sponding to AIDS Network (LRAN), gives voice to the concerns of Latino leaders and existing organizations in-volved in AIDS work; it has been spearheaded by the Latino Commission on AIDS in New York. As an example of their public policy interests, the Latino leaders urged the federal government to fund needle-exchange and drug treatment programs, not only to address the high rate of drug-related HIV infections among certain Latino subgroups, but also to help stem the national epidemic of substance use. As a long-term goal, the group recommended that a report card be issued assessing the records of all elected officials on issues of concern to the Latino community.

As Miguelina Maldonado of the National Minority AIDS Council declared during the summit, "The goals are to prevent and reduce the impact of the health care crisis of HIV and AIDS in the Latino community and to have all sectors of the Latino community address this health care crisis in the ways they can." By keeping the goals broad, participants hope to avoid diminishing the importance of specific issues - such as those concerning gay people, immigrants, or adolescents - while allowing leaders and organizations with different emphases to bring what they can to the mission of Leading for Life/Unidos Para la Vida.

DeLeon cautions, however, that the campaign’s agenda must not be so broad that it loses its strength, becoming merely a list of general points endorsed by a group whose members happen to be Latino and opposed to AIDS. "Leadership is not just getting the absolute consensus of everybody," he says. "Leadership is speaking out for something."

Moíses Agosto of the National Minority AIDS Council believes the need for continuing, effective leadership on these issues is vital to the campaign’s success. "I think it’s important for us to have this determination that we will be the leaders, and that we will build the infrastructure that is needed to have the young people also be leaders and feel proud of it."

- Helen Kao is special projects coordinator at the Harvard AIDS Institute.