Epidemic Without an Identity

Sitting in the waiting room of the doctor's office on that sweltering day in April 2005, Julio was more worried about the cost of his co-pay than the sharp pain in his abdomen. When he later found out that a kidney infection was to blame, he, ever the self-critic, mulled over the past: I should've drunk more water. I should've been more proactive, taken better care of myself. But as it turned out, his kidneys were the least of Julio's worries. The day he got the much more serious news started like any other. He showered and got dressed. Then, on his way out the door, Julio realized he'd forgotten his morning prayers. 'So I prayed while walking to work,' he recalls. 'Seven blocks is more than enough time to talk to the Lord.' He told God about a dream from the previous night'he was surrounded by friends when something terrible happened. Then, as he had in his dream, he started reciting the Lord's Prayer: Padre nuestro que estas en los cielos, santificado sea tu nombre' His sense of foreboding grew when he got to work and saw the red light indicating a voice-mail message. It was his doctor. He hurriedly returned the call. The results of his HIV antibody test were in. 'You tested positive,' the doctor told him. The conversation, if it could be called that, was brief. The closest the doctor came to offering moral support was in passing on the name of a specialist, who couldn't see Julio for a month. Like many gay Latino immigrants who came of age after moving to the United States, Julio allowed himself to have sex with other guys, but he wouldn't'couldn't'buy or use condoms. Only gay men used condoms. Buying them would be a public admission of Julio's homosexuality, and he desperately wanted to maintain the illusion of heterosexuality. 'A Latino male,' he explains, 'has to be very macho.' After speaking with his doctor, Julio spent the next hour staring blankly at his computer screen. There he was'just 24 years old'feeling very alone and terrified at what lay ahead for him, and tearing himself to pieces inside. I was so stupid, he thought. This is what I get for breaking God's law. While sitting at his desk that day, an earthquake shook the high-rise office building and sent further shock waves of fear through him. Then, compounding his anguish even more, a coworker's wife brought their six kids by the office. It hurt to look at them. Julio was certain his own dreams of having a family were destroyed. He nearly went crazy waiting a month for his first appointment with an HIV specialist. Am I going to die? he constantly wondered. How long do I have to live? Knowing that his doctor's answers to those questions were still weeks away, Julio decided to take action on his own. He went online and found Bienestar, a social services agency that targets the needs of both gay and HIV-positive Latinos in the greater Los Angeles area and San Diego. There, he found not only information about HIV but also kinship. 'They knew that it's tough with the family that I had,' he recalls. 'The role of the mother, the religious background that most Latinos share, talking about going to hell, talking about God hating me. I think it's a cultural thing that Bienestar embraces and knows really well. I was worried I'd be cast off from my family. I don't think you can put a price on that kind of support.' Raging in Silence While many Americans today focus on the Hispanic population only through the myopic political lens of illegal immigration, largely escaping public scrutiny is the rapid emergence of a 'nuevo wave' of the U.S. HIV epidemic. Although Latinos represent only 13% of the U.S. population, they account for 19% of new AIDS diagnoses and 19% of all U.S. AIDS cases. They have an AIDS case rate more than three times that of whites, according to the U.S. Centers for Disease Control and Prevention. And 42% of all HIV-positive Latinos develop AIDS within a year of their diagnosis, indicating not only that regular HIV testing rates are low in Latino communities but that many Latino HIVers are potentially spreading the virus for a decade or more before learning they're infected. New immigrants'legal and undocumented alike'are at particularly high risk of HIV infection due to compounding factors of social instability, language and cultural barriers, and poverty, all of which fuel the spread of the virus. [See Ask & Tell on page 60.] And yet, despite these increased risks, efforts in the battle against HIV among Latinos are largely patchwork, run by small-scale organizations working mostly on the local level. In many ways this is an effective approach, because the 'Latino' umbrella hangs over a vastly diverse population. It helps for individual groups to tailor their work to suit more personal needs. But increasingly, Latino leaders are calling for a more cohesive, broad-based blueprint to fight the disease. In the face of a health crisis, a coalition of HIV advocacy groups, brought together by the Latino Commission on AIDS, issued a position paper in June outlining strategies for a unified national response, while calling on the federal government for increased vigilance. But while a national strategy is hammered out, local groups like Bienestar and the Los Angeles Gay and Lesbian Center continue to conduct street-level outreach, providing not only bilingual but bicultural services. 'It's not just a matter of providing services in Spanish,' says Alonso Bautista, program manager for the gay and lesbian center's Positive Images services for HIVers. 'It's really providing services from a Latino paradigm. And so we talk about stuff like family and religion.' Knowing the specific issues facing Latino males is important, Julio says of the comfort level he found at Bienestar. He had visited another social services agency in Los Angeles that targets a mostly Asian population and found himself feeling extremely out of place. 'They were very 'Forget your parents. Who needs them!' ' he says. 'To me that was a no-no.' His first time at Bienestar, Julio was too nervous to say anything during a support group meeting. So a counselor sat him down for a one-on-one conversation. At first he just listened to Julio's fears. But then he started to tell him not to beat himself up; that people could live a long and fruitful life with HIV. 'Those who die,' the counselor said, 'are those who don't want to live.' Those words and that invaluable support helped Julio begin a gradual transformation into a man who yet again saw hope and promise in his future. Reaching the Unreachable For agencies serving men and women like Julio, obtaining funding is an uphill battle. Oscar De La O, founder and president of Bienestar'which has a $5.4 million annual budget and 102 employees among its 11 community centers'says the organization struggles to attract white donors. And the Latino population, he adds, is still too uncomfortable to ally itself financially with the AIDS movement. That leaves government funds, which come with tangled strings attached. The CDC, for example, requires that community-based beneficiaries of its public-health grants select from a list of intervention programs that are scientifically proven to be effective in fighting the spread of HIV. However, De La O complains, few of these programs have been designed for Latinos, and the CDC does not readily provide extra funds for Spanish translation or other programs to accommodate different cultural needs. For example, the CDC forbids using its grant money to provide refreshments during HIV prevention events. 'That's a big disconnect,' says De La O. 'How do you come together as a familia if it's not around food?' 'We need to have programs designed by and for Latinos'not to take the Gay Men's Health Crisis or AIDS Project Los Angeles or whoever else's Caucasian-sensitive program and just change the words into Spanish,' adds Ruben Acosta, associate director of the L.A. Gay and Lesbian Center's health education and prevention department. Acknowledging the paucity of such programs, the CDC, to its credit, established an executive committee a year ago to address the Latino AIDS crisis. It hopes to issue a draft master plan this fall. For social service agencies, reaching a demographic that would rather remain hidden also poses a sticky challenge. Many undocumented immigrants fear that any contact with service groups could lead to exposure and deportation. Complicating the matter further is an animosity toward and disenfranchisement of immigrants that makes them feel unworthy of receiving help or even afraid to seek it, warns Heriberto Sanchez Soto, executive director of the New York City'based Hispanic AIDS Forum. 'They feel like they don't have options,' Julio says of the fellow immigrants he knows. 'What am I going to do now? I don't belong here; this is not my country. I will die; there is nothing for me.' So even when culturally appropriate services are available, access often remains low, Soto says. Another problem, according to Francisco Ruiz, program manager for racial and ethnic health disparities at the National Alliance of State and Territorial AIDS Directors, is that personal health can be low on the list of priorities for people struggling simply to feed and shelter themselves and their families. 'How can we integrate the messaging with these other issues that are a concern?' says Ruiz. 'How can we talk about housing and HIV? How can we talk about employment and HIV?' La Familia Julio's biggest issue was family. Thanks to the support he received from Bienestar, he was able to gather enough courage to drop a double bomb on his parents and brothers. They didn't know about his HIV infection or his sexual orientation. The moment came when one of his brothers was arguing with the family and threatening to move to another state. Julio went to his brother's house and gave him the news. 'Why are you telling me this?' his brother said. 'I need my family close,' Julio replied. His brother cried and hugged him. 'I don't want you to die,' he said. 'I'm not going to die,' Julio told him. 'But I need you by my side.' As he gradually told the rest of his immediate family, they too came around to a place of understanding and support. His father, however, took longer than the rest. A devout Catholic, he couldn't reconcile his religious beliefs with having a gay son. Julio recalls seeing him sitting quietly by himself at church, alone with his grief, during a social hour. Usually he was a gregarious man, chatting up the whole congregation. Then at a family barbecue, Julio and his dad shared a couple of beers and finally opened up to each other. Today, Julio says his relationship with his family has only grown closer since he his disclosure. [Because his extended family is still unaware of his serostatus, he chose to use only his first name for this interview.] 'We even joke about it,' he says. 'When I take my medicine, they make fun of me, saying I'm on the Pill.' Beyond Just Safer Sex Kurt C. Organista, Ph.D., an associate professor at the School of Social Welfare at University of California, Berkeley, who focuses on HIV prevention among Latino migrant workers, says it's time to think more holistically about HIV prevention for this population. 'Most funding these days is wrapped around making people aware of transmission and giving them condoms and sending them on their way,' he says. 'And yet some of the people who are at the highest risk'they have other things competing with their risk behaviors. So my thinking is really about how you make working conditions better so that people don't feel so desperate and then they start taking all these chances that they normally wouldn't take.' Organista tips his hat to the Multicultural Institute, a social services agency that targets migrants and day laborers in the San Francisco Bay area. It holds regular Friday afternoon soccer games for day laborers and field workers who are unable to find work that day and who might otherwise turn to a weekend of binge drinking to ease their frustrations. From an HIV prevention perspective, the benefits are double'the men are kept from engaging in risky behaviors, and they make contact with an agency that can refer them to antibody testing or other heath-promoting resources. Bautista says the Los Angeles Gay and Lesbian Center also follows this holistic approach. 'We really want to build the person up'their ability to be self-efficacious,' he says. Julio says the counselor he first talked with at Bienestar advised him about much more than just HIV. Gradually the two became friends, and the counselor felt comfortable opening up about his own experiences with HIV. He told Julio that if he really wanted to enjoy a full life, he had to take care of himself. Julio resolved to put extra effort into exercising. He decided he wanted to live. The two of them also discussed the importance of staying in school and about learning to relax. 'Sort of helping me put my ideas back on track,' Julio says.  Julio now sees himself as a changed man. He says he's gotten a college degree in finance and is working on another in accounting, ready for whatever the future holds.   'At the beginning I had these thoughts of dying'It's over for me,' he recalls. 'But it's not over. I have finished college. And now I'm working on my master's. You can still laugh and have your dreams come true.'