A Seat at the Table

AIDS Network Lets Latino Voices Be Heard
by Larry Buhl

Miss Universe 2009, Stefanía Fernández, takes a rapid HIV-antibody test as part of her commitment to promoting HIV education, and the fight against homophobia and HIV stigma. Photo Courtesy Latino Commission on AIDS
We’ve heard the statistics from the 2010 U.S. Census: Hispanics are now 16.3 percent of the total U.S. population and accounted for most of the nation’s growth (fifty-six percent) from 2000 to 2010. There are some lesser-known statistics regarding Hispanics in the U.S. According to the U.S. Department of Health and Human Services, Hispanics are 2.8 times more likely to be diagnosed with AIDS than Whites. Hispanic males were also 2.5 times more likely to die of AIDS than their non-Hispanic White counterparts in 2007, and Hispanic women were 3.6 times more likely to die from AIDS.

Until 2008 a patchwork of local organizations served Latinos in preventing and treating HIV/AIDS but there was no umbrella organization able to work on the national and local level to develop a framework and a plan for reducing HIV/AIDS.

With more than 400 individuals and organizations working with Latino communities across the United States, the National Latino Hispanic AIDS Action Network has been filling that void and is now influencing national, state and local efforts to combat the spread of HIV/AIDS among the many Latino communities in the U.S.

Building infrastructure
At its first summit, Network founders developed an infrastructure for oversight, direction, and a vision for the creation of healthier Latino communities. They also set the goals of implementing its agenda, developing statewide agendas, convening another summit by 2011, and developing solidarity with Puerto Rico. “We’ve done everything we set out to do at the first summit, except for holding a second summit, and that was due to lack of resources,” Guillermo Chacon, president of the Latino Commission on AIDS, tells A&U magazine.

Though the Network has limited resources, it boasts a large number of allies, including health service providers, researchers, national and community-based organizations, state and local health departments, people living with HIV/AIDS and concerned individuals. These members have spent the past three years mobilizing, educating, and advocating on the national and state and local levels in collaboration with Latino-serving organizations and communities to prevent HIV infection, increase access to care and treatment, and inform research efforts that address the needs of diverse Latino communities. As a result, many state and local health departments have allocated additional funding, designing and implementing innovative programming, and dedicating staff and other resources to confront the burgeoning HIV/AIDS epidemic in Latino communities.

“[Through the Network] health departments join in the national, state and local efforts to build the capacity and infrastructure needed to effectively address these diseases in our communities,” says Francisco Ruiz, senior manager, Health Equity National Alliance of State & Territorial AIDS Directors (NASTAD), and a member of the Network.

“The Network provides an outlet for health departments to reaffirm their commitments to providing a comprehensive approach to addressing health disparities among Latino communities and to reassert their roles as leaders in the fight against HIV/AIDS in Latino communities,” Ruiz tells A&U.

A big win for the Network was the inclusion in the National HIV/AIDS Strategy (NHAS), delivered by President Obama in 2010. The Network’s Latino/Hispanic HIV/AIDS Federal Policy Recommendations were considered as part of the National AIDS Strategy, and members of the Network continue to meet with the Administration and federal partners to ensure that the realities and perspectives of Latinos are taken into account during their decision-making activities,” Chacon says, adding that having a seat at the table by offering suggestions in how to tailor the NHAS to meet the needs of Latinos was an important step. “Now we don’t have to send thousands of letters to HHS. They are writing to us to discuss what needs to be done.”

Coordinated and culturally relevant response to AIDS
Due to various political, cultural and linguistic barriers, the HIV epidemics among Latinos have often not received adequate attention in the overall response

Latinas attend training in HIV, STD, empowerment, and self-esteem. Photo Courtesy Latino Commission on AIDS
to reducing and/or eliminating new infections, according to Ruiz. But saying there are problems reaching Latinos suggests and reinforces a common misperception that Latinos represent a single bloc.

“We need to look at how HIV is transmitted in different Latino population centers in order to be more effective in crafting prevention strategies,” Chacon tells A&U. “In New York, for example, the HIV-positive Latinos are more often IV drug users, but in Texas, they’re more likely to be men who have sex with men [MSMs].”

In addition, Latinos/Hispanics have different backgrounds in different parts of the country. In central Florida there is a large population of Puerto Rican and South American immigrants. In the southwest, Mexican and Central American immigrants dominate.

For those reasons the Network is developing various statewide strategies to reach its target populations, and has already developed statewide agendas in Illinois, Maryland, D.C., and New York and are starting on Florida and California, according to Chacon.

There are some issues common to all Latinos in the U.S., and they tend to present challenges that are not faced with Anglos and other racial groups.
“Latinos tend to be late testers, so by the time they do test positive, too often they soon have full-blown AIDS,” Patricia Canessa, executive director of Salud Latina, tells A&U.

She adds that the American system of healthcare is so complex that many recent arrivals are frustrated with navigating it. Add the fear of being deported (for undocumented immigrants) and the language barrier for many, and you have a huge number of Latinos who avoid healthcare until it’s nearly too late. “This is not just for HIV/AIDS. For breast cancer and other diseases, Latinos tend to stay away from doctors. It is denial. They are afraid that if they go to the doctor, they will be told that they are sick. And if they are sick, that will cost money. So many have other survival priorities before healthcare.”

Young Latino immigrants, the largest growing HIV population, are not well served, Canessa and other experts agree.

“While there have been recent efforts on behalf of the Administration and federal partners to include Latino perspectives, these efforts will likely not prove effective if concepts of power and privilege are not examined,” Ruiz says. “Power and privilege create an uneven playing field and lead to inequities, gaps in services and a higher percentage of death and poor health. It is critical to reprioritize and scale-up efforts and strategies to address HIV/AIDS in Latino communities while acknowledging the challenges associated with power and privilege.

Beyond inequalities one of the barriers for Hispanics is the need for more culturally sensitive healthcare practitioners.

“Stigma is a big issue with Latinos,” Chacon says. “If I’m gay and I walk into the clinic and the staff laughs or is in any way insensitive, I will walk out and never get tested or treated. This happens in our communities all the time.”

Chacon adds that the heated rhetoric regarding immigration hasn’t helped Latinos feel comfortable in accessing government services. “When you have leaders bashing immigrants it creates damage, because people don’t trust institutions and they’re afraid to reach out for services. People who are afraid don’t make the best decisions.”

Getting active

Francisco Ruiz, senior manager, Health Equity National Alliance of State & Territorial AIDS Directors (NASTAD), and a member of the Network. Photo by Gary Jenkins
The Network has many ways to get involved. It hosts monthly Webinars regarding pertinent topics impacting Latino/Hispanic communities at the national and local levels. Another opportunity to be engaged is through three workgroups: Care and Treatment, Prevention and Surveillance, and Research and Data. Workgroups, open to all Network members, provide timely and thorough recommendations on assigned issue areas. Additionally, the Network hosts meetings and workshops at various national and regional conferences. These meetings give new and established members a chance to share strategies and ideas in how to better serve Latino communities in the U.S.

For more information regarding the National Latino Hispanic HIV/AIDS Agenda, send an email to [email protected]. Or go to www.latinoaidsagenda.org or www.facebook.com/nlaan

For general information, log on to: http://minorityhealth.hhs.gov/templates/browse.aspx?lvl=3&lvlid=70.

Larry Buhl is a freelance journalist and screenwriter living in Los Angeles.

August 2011