This year more than 20,000 people descended upon the nation’s capitol for the National Council of La Raza (NCLR) Annual Conference. The NCLR is the largest national Latino civil rights organization in the U.S. and the conference brings together the most influential individuals, groups, and companies to discuss trends in the Latino community.

At the conference, the NCLR partnered up with California State University, Long Beach (CSULB), Center for Latino Community Health, Evaluation and Leadership Training, and the National Institutes of Health Office of AIDS Research to release a set of guidelines titled A Donde Vamos? New Directions for Culturally Relevant Latino Community Involvement in HIV/AIDS Prevention and Services Research.

The following highlights from the report demonstrate how Latinos are working together to curb the HIV epidemic and how the community can move forward as one, healthier and stronger.

Thirty years after the first published AIDS cases, it has become clear that Latinos are disproportionately affected by HIV. In 2009, even though Latinos constituted only 16 percent of the U.S. population, they represented 19 percent of those diagnosed with HIV and 21 percent of those diagnosed with AIDS in about 40 states.

Furthermore, compared to their white peers, Latino men had twice the rate of HIV cases and Latina women had five times more. As a group, Latinos are the last to be tested for HIV and the first to develop or die from AIDS.

Researchers believe that the soaring numbers can be attributed to two general areas—macrostructural factors (built into society) and social and cultural factors.

The first category includes factors like poverty, discrimination, and lack of or access to health insurance. The second category includes factors like the difficulties of immigration, acculturation, traditional cultural values, gender roles, and the lack of Spanish services (like testing programs and health care information).

Even though Latinos across the country bear a large portion of the HIV burden, there are very few Latino-focused initiatives to help bring those numbers down. In fact, only a few Latino organizations have been asked to contribute strategies and instead organizations are left to modify existing programs to fit largely incongruent needs.

The NCLR and CSULB believe there are three areas that need to be addressed:

1) Integrating cultural values into treatment strategies. The fact is that almost two thirds of Latinos living in the United States are foreign born and they react to cultural influences and norms not commonly addressed in mainstream programs. Norms like strict gender roles, the feeling of “familia” and “confianza” in interpersonal relationships, the concept of “respeto” in hierarchical structures, and the powerful pull of machismo. Instead of programs that center, celebrate and work within these concepts, educators are left to add them in to rigid programs designed for all white or all black communities.

2) Using community assets. Most HIV programs focus on the power of the individual and his or her ability to take control of his or her life. But Latino cultures value tightly knit groups and familia over individuals. NCLR and CSULB believe that successful programs work with and celebrate the whole. For example, using “promotores de salud” that are recognized as members and leaders of the community to become trusted resources instead of targeting and training random individuals to take on that role.

3) Broad research studies including components of Latino culture in order to truly understand how strategies work. They should do this by including mixed-language, family-based strategies for HIV prevention and testing instead of only focusing on single-language, individual concepts. They also should include culturally appropriate biomedical approaches to treatment. The scientific community has made great strides recently in developing treatment and prevention, but studies gloss over Latino-specific contexts of risk. For example, biomedical research doesn’t take into account how a pill will affect the diseases that Latinos are most at risk for, like diabetes or heart disease.

After examining the barriers to reducing HIV cases and AIDS-related deaths in the Latino community, the NCLR and CSULB have made recommendations:

1) Improve data. This includes data on the impact of HIV on Latinos, publishing HIV data about Latinos in all states, tracking changes in HIV/AIDS cases among Latinos, and improving definitions of risk population categories (like including “presumed heterosexual”). Improving data will improve how the United States views and defines the epidemic, improve resource allocation, and allow researchers to improve prevention and treatment programs with clearer communities in mind.

2) Work within the social and cultural context. To do so, strategies must make references and be responsive to Latino cultural values and experiences and integrate them. They must also challenge the taboos of homophobia and sexual communication so prevalent within the Latino community and they must emphasize the positive aspects of gender roles. They also must develop linguistically relevant programs that target the Latino family.

3) Acquire the capital, financially and politically, to expand programs and research to be Latino-centric. The fact is that the Latino population is the largest and youngest minority group in the United States. By 2050, nearly one in three U.S. individuals will be of Latino descent. It is imperative to work within the community now to ensure the healthiest and brightest future later. Using a cookie-cutter approach for HIV prevention will only serve to expand the epidemic. Latinos should demand specific, targeted approaches for themselves, their communities and their nation.

For more information, click here to go to The NCLR/CSULB Center for Latino Community Health, Evaluation & Leadership Training.