By Benjamin Ryan
Originally published on Advocate.com November 18 2010 5:00 AM ET
Having lived with HIV for well over a decade, Carlos Hernandez had pretty much resigned himself to not having a future. He eventually “ran out of T cells altogether,” he says, but he still refused to take antiretroviral medications. He’d tried them a couple of times in the early days of the newly formulated drug cocktails and was adamant that he’d never face the side effects again. The fact that more tolerable medications had been rolling out of the pipeline over the years since his last attempt at treatment in 1999 escaped him.
“I told myself, Screw it! My days are numbered,” he recalls. “I quit paying my taxes. I just quit paying attention. I didn’t plan on being around. To me, my only future was that I was just going to have a slow death from AIDS.”
After two bouts of meningitis, he wound up in the hospital for what seemed like the third and final time — so ill that the 5-foot-8 Hernandez dwindled from his usual 170 pounds to 85. It was finally time, he felt, to tell his family that he was HIV-positive.
Similarly apathetic, heroin addict Samuel Morales, who tested HIV-positive and was given six months to live in 1985, blazed through the go-go decade on a spree of theft and drug dealing, bouncing back and forth between prison and the streets of Philadelphia. “That was my thing: drugs and stickups,” the 53-year-old preacher’s son and one-time honors student says. “I didn’t really care about life. My life was like… I walked in the streets and felt like people knew who I was. I would stick them up and tell them, “It’s not me. It’s the drugs.” I guess I was looking for somebody to kill me, or I was trying to kill myself. I ain’t care about life.”
In 1990, facing a bundle of charges, including attempted murder and skipping out on bail, Morales pleaded no contest and was sent to prison for eight to 20 years. There, continuing to deal and use drugs on the inside, he faced the dismal medical care typical of U.S. prisons throughout much of the early days of the AIDS epidemic, extended stays in solitary confinement, and the apparent certainty that he would die before ever getting out.
In contrast, 41-year-old Mexican native Gabriel Rocha says that he was desperate to live but was unable to find any help that would allow him to. In 1999 while living in Puerto Vallarta his health declined to a point as dire as Hernandez’s at its worst. “Doctors wouldn’t touch me,” he wrote earlier this year in his fund-raising pledge for the California AIDS/LifeCycle. “They told me I was going to die and there was nothing they could do for me. They condemned me to a death sentence and were unwilling to lift one little finger to help.”
Fortunately, Rocha had a patron saint of a friend in the United States who flew him to San Francisco. Cheating death, he would remain in the hospital there for the next four months. Eventually, he applied for and was granted political asylum in the States. But it wasn’t just the lack of proper medical care in Mexico that threatened his life; he was once abducted by a group of men and tortured over a two-day period because of his sexual orientation.
The need for improved strategies to target Latino men at risk for and living with HIV is great — perhaps even greater than for any other demographic because of the historical lack of attention paid to their plight. Theirs is an epidemic that has run silently over the decades. Latinos have no Magic Johnson to serve as a role model or as a public face for living with the disease. Latino churches, by and large Catholic, tend to be as AIDS-phobic and homophobic as — or more so than — African-American churches. In comparison, though, there is little public outcry over this major source of stigma, which otherwise has the potential to become a pulpit for greater awareness.
The rate of new AIDS diagnoses among Latino men, according to the White House strategy report, is three times that of white men, and as a risk category, Hispanic men who have sex with men have the fourth-highest numbers of new HIV infections per year at 5,710, behind white and black MSM, respectively, and black heterosexual women.
More than any other an ethnic group in the United States, Latinos are alienated from health care and proper health screenings, according to the Kaiser Family Foundation. Nearly a quarter of HIV-positive Latinos are uninsured; 41% test late and develop AIDS within a year of their HIV diagnosis; and, as Carlos Hernandez’s story illustrates, they are more likely to delay medical care after a diagnosis.
The triple-layered effects of poverty, racism and homophobia drive the epidemic among Latino gay men in particular, according to Rafael M. Díaz, Ph.D., who studies HIV in Latin culture at San Francisco State University. Men so heavily oppressed are more likely to seek solace by taking sexual risks and are likely to do so while under the influence of alcohol or illicit drugs. With HIV infection thrown into the mix, men are at even higher risk for substance abuse disorders, anxiety, and depression — which can all compromise antiretroviral treatment. Díaz’s research of HIV-negative gay Latinos’ attitudes has found that they tend to blame HIV-infected men both for their infections and for infecting others and also shun them as potential romantic partners.
“The number 1 problem is the stigma associated with HIV and AIDS,” says Guillermo Chacon, president of the Latino Commission on AIDS. This stigma, which is fueled in part by a rigid Catholic belief system and the machismo ideal of the masculine, domineering head of the household discourages Latinos from getting tested and into care.
Also to blame, says David Ernesto Munar, who is vice president of the AIDS Foundation of Chicago, is the isolation Latinos experience because of cultural or language barriers. HIV-positive Latino men may have to fracture their sense of self and wind up with a lack of full emotional support from their family — the bedrock of existence across the many diverse shades of Latin American culture.
“They may be out in the gay community, or they may be bicultural or more Americanized,” Munar says, “but in their Latino family or their Latino enclave, they can’t talk about gay issues, or they don’t feel safe talking about health issues or HIV issues.”
Like Morales, heterosexual Latino men are largely infected through unsterilized needles. And they can suffer homophobia by association for their HIV status and shoulder yet another layer of blame because of their substance abuse.
“They’re often faced with the idea that this is a community of discard,” says Ruben Acosta, who is a health educator at the Los Angeles Gay and Lesbian Center. Speaking ironically, he continues, “I mean, they’re drug addicts. If somebody wants to take a needle and stick it in their arm and it’s not clean, that’s on them.”
His parents have remained married for half a century. “They’re a typical Latino family — where the mother has no say,” Hernandez says. Over the years he’s managed to maintain a relationship with both his mother and father and his four siblings. At 18, he disclosed that he was HIV-positive to a sister in secret. In his mid 20s, when he told one of his brothers — “another macho Latino who was in the Marines” — the brother responded, “I love you, you’re my brother, but I don’t want to talk about it.”
Hernandez’s apathy about his future ran parallel to the tenuous support he received from family. Not bothering to enter into the proper medical care that had by then been available for a decade, he nearly died in 2006. “When you don’t have the support — if you don’t talk about it — you’re not going to deal with it,” he says. “It’s a lonely struggle. My dad would’ve been a lot happier if I had had cancer. At least then you can die with some dignity in his eyes and that’s ‘respectable’. ”
Twenty-five year old Anthony Solder suffered similar dismay when, early last year, he approached his family with the news that his former boyfriend (who still maintains he’s HIV-negative) had infected him shortly before their breakup. While one of his two older brothers became a strong supporter, the other, a pharmacist, responded, “How could you do this to the family?” and cut all ties with him. In the weeks that followed, his Puerto Rican mother began furiously sterilizing things he’d touched and refused to drink out of the same glass.
“I understand the stigma that my family had already, because they’re not educated,” says the native New Yorker who is in school in Tampa to become a registered nurse. “I was like, ‘Listen, you cannot be acting like this toward me,’ ” he told his mother, “ ‘You cannot contract it from water, you cannot contract it from using my restroom.’ ”
Ruben Acosta, a 19-year veteran of living with the virus, says what he sees as an “anti-intellectual tendency” in Latino culture makes discussing and learning about HIV more challenging for those infected and their family members alike. “It’s like my brother says, ‘Don’t start talking smart to me,’ ” Acosta explains. “Trying to elevate yourself with just using the proper vernacular in the language, sometimes in the Latino community, is looked down on. Oftentimes, the community isn’t ready to say such things as ‘nondetectable’ or ‘T cells’ or ‘viral load’. ”
Word choice also illuminates what Acosta sees as a certain defeatist identification with the virus among HIV-positive Latino men. “When they identify, they say, ‘I’m HIV,’ ” he says. “And I say to them, ‘You’re not HIV. You’re actually HIV-positive. But you’re hot, you’re sexy, looks like you’ve got a lot to offer — I mean, there’s a lot about you that you are that I’d love to know more about!’ ”
Then on a day like any other in 1993, he returned to his cell with some heroin he’d scored and, as he recalls, “Something just clicked in me. I was like, You know what, Sam? You’re doing the same thing you did in the streets. And you’ve got 20 years to do. So I said to myself, I’ve got to stop this. So I just stopped. I had to take an inventory of myself.”
He got his GED. Then, fed up with the poor medical treatment offered to him and his fellow HIV-infected inmates, he went to the law library and approached a friend who was in for life. “Teach me the law,” he said.
By 1995, he initiated a civil suit against the corrections institution for misuse of funds for their care for HIV-positive prisoners. He started an HIV support group and by 1998 got a job on the inside as a law clerk.
Hernandez experienced a similar moment of reckoning. A hospice nurse approached him as he was waiting to die and said, “Why are you giving up? Why aren’t you fighting anymore?”
“That night,” he says, “I remember getting on my knees and I just prayed. I said, ‘God, just give me a second chance.’ And I kind of made a deal with him. I said, ‘If you give me a second chance, I will completely turn my life around. I will dedicate my work to sharing what I’ve been through with other guys who are avoiding their status, who are hiding from it.’”
The process of healing included helping his parents cope with both the shock that he’d been hiding his serostatus from them for 15 years and their lack of education about the virus. Eventually, a social-service organization for HIV-positive Latinos and their families in San Diego called CASA was able to provide the Hernandezes with the right kind of education and support to bring them together again as a family.
Today, Hernandez is a health educator at the Los Angeles Gay & Lesbian Center, doing just the kind of work he promised he would. Even though he and his father still have their rough patches, he has reconciled with him and says he no longer blames him for the abuse that drove him to try and take his life as a teenager.
“It’s that cycle of abuse that was passed down,” Hernandez says. “He had extreme abuse. By the age of 10 he was living on the streets of Mexico City with no shoes, nothing. So I just had to put myself in his shoes and try to understand what he was trying to deal with, seeing that he has a son who’s obviously gay — kind of has this feminine side growing up — and didn’t know how to deal with it.”
Since his release from prison in 2000, Morales has committed himself to HIV education and advocacy work in Philadelphia, gathering an armful of awards for his service to the community. In 2008 he and a friend founded Proyecto Sol, an outreach program targeting local HIV-positive Latinos.
“I tell people, ‘You don’t let HIV live you, you live HIV,’ ” he says. “My life changed. I continue doing it. My only pleasure that I need is to see people smile. If I see people smile, that’s the pleasure I get — helping people.”
Anthony Soler, who also does outreach HIV education work in his free time, successfully got his mother to see the error of her ways. Not long after their heart-to-heart, she approached him as he was drinking out of a cup. “ ‘What are you drinking?’ ” he remembers her asking. “And she grabbed my cup and started drinking out of it. It made me cry, because I kind of felt like, OK, the stigma’s being broken little by little.”
Gabriel Rocha, who now calls San Francisco home and is waiting on becoming a full U.S. citizen, has participated in the 545-mile AIDS Life/Cycle benefit ride from San Francisco to Los Angeles. Riding through the farmlands one day, he and his fellow riders struck up a conversation in Spanish with some migrant farmworkers, who asked about the ride. “They came together and scratched through their pockets — and they give us money right there — and they said, ‘We want to support you,’ ” Rocha says. “That’s how we have an impact. That’s how we make a difference.”
“One of the things I always tell people: is that it’s all about being proactive,” Hernandez says. “Get involved, be your own advocate, be informed. And the last thing I tell them, he says with a laugh, ‘Do your taxes! Those are never going to go away. They’ll find you.’ ”
He adds, “If you live in denial, little things become bigger problems. Then they become stressors and they just affect your health overall.”
It wasn’t easy, but after keeping up his end of things with God, Hernandez says he has finally settled his bill with the I.R.S.
He’s glad he can laugh about it now.