Latinos are about 18% of the U.S. population, but they represented almost 30% of all HIV cases nationwide in 2019, according to the Office of Minority Health at the Department of Health and Human Services. So of the nearly 1.2 million people in our country with the virus, about 300,000 are Hispanic/Latinx. I am one of them.
I’m a 53-year-old Mexican-American gay man living in New York City. In November 2003, I was living in Little Rock, Arkansas, sick with what I thought was a stubborn case of bronchitis. I had a dramatic cough so violent that my roommate Cassie could hear it from her bedroom at night. One afternoon, Cassie came home from work at lunchtime to check in on me and found me lying on the floor. My face was blue, and I was gasping for breath. She carried me to her car and sped me to the emergency room, where I was intubated and put into a drug-induced coma.
I woke up three weeks later with my parents, my brothers and my sister—along with a very serious-looking doctor—all standing around my hospital bed. I was getting my bearings when the doctor told me my diagnosis: AIDS. I’d had pneumocystis pneumonia, thrush and histoplasmosis. My viral load was through the roof, and my CD4 count was 4. I looked at my family in horror, worried about what they were thinking. My sister took my hand and said, “Don’t worry about us; we’ve known for three weeks.” I left the hospital on Thanksgiving Day, the best Thanksgiving of my life.
I was lucky, in more ways than one. That I lived was the big miracle, but there were practical considerations too. I had been fired from my waitering job days before my hospitalization (“You just haven’t been yourself lately,” my snotty boss had said), and I didn’t own a house or even have my name on an apartment lease. Uninsured and lacking any assets, I was considered indigent by both the hospital system and the government. That made me eligible for a lot of benefits.
While I was in my drug-induced bliss, my parents took care of the paperwork, signing me up for every benefit possible. By the time I was released from the hospital, I had disability benefits, including Medicare and Medicaid. I was connected to case management and services at the Arkansas AIDS Foundation. I was streamlined into the systems already in place and slid right from hospital care into regular HIV care. I quickly regained health and went from having an extraordinarily high viral load to having undetectable virus in mere weeks.
Although I almost died, I’m very aware that my HIV experience oozes privilege. I’m a fifth-generation U.S. citizen. I speak English. I have support from family and friends. It was and continues to be relatively easy for me to navigate finding the care and support I need, whether that means dealing with the social security system or pharmaceutical issues or finding medical care, mental health support or anything else. The barriers to my treatment and overall care have been few. That is not the case for many Latinos living with HIV.
According to the Centers for Disease Control and Prevention (CDC), compared with all people in the country with HIV, Latinos have lower viral suppression rates. Sixty-one percent of U.S. Latinos with the virus receive some HIV care, 49% remain in care and only 53% make it to an undetectable viral load. The CDC cites several causes for these numbers: racism, discrimination, homophobia, HIV stigma, poverty, lower education levels, language barriers, mistrust of the health system and fear of disclosing immigration status, among others.
These barriers can seem insurmountable. Yet, many in the Hispanic/Latinx HIV community who’ve faced and continue to face such challenges are living full, joyous, healthy lives with HIV. I had the pleasure of speaking with two of them.
Christina (not her real name) is a stylish 29-year-old transgender woman who lives in Birmingham, Alabama.Because she doesn’t speak English and I don’t speak Spanish, Alexander Bautista from the group AIDS Alabama graciously sat in as a translator.
Christina was born in New Mexico but was raised in Veracruz, Mexico. “I had a very terrible childhood,” she says. She grew up with her mother and three siblings. She says, “I was very lonely because I wasn’t a normal kid and wasn’t allowed to play with anyone.” Christina also suffered sexual abuse as a child. “It was from someone in the household,” she says, “from when I was 6 to when I was 8.”
Christina always knew that she was female, even though she didn’t know what a trans woman was. When she was 7, she started to question her gender. “I wondered, Why do I feel like a girl and I’m a boy?” Christina recalls. She began to honor her true self at age 13 by wearing more feminine clothing; at 14, she began medically transitioning.
Her family disapproved. “I come from a very Catholic religious family,” she says, “and they still believe that the whole LGBTQ community is going to hell!”
When I asked Christina to tell me about her HIV journey, a look of sadness came over her, and she took a deep breath. “It all started with my family’s disapproval,” she says. “I was never a rule follower. I always just did what I wanted,” she says. Christina felt as though she had to choose between two terrible options: to stay at home with her family and become what they wanted her to be, a “real man,” or to leave and be vulnerable to the unknown. She ran away at age 12.
These barriers can seem insurmountable.
Life away from home was not so easy. “In Mexico, when you are an innocent, away from home, you are like a target [for predatory men]. Easy to exploit,” she says. She intimates that she was repeatedly abused.
She found work at a discotheque. At the club, Christina was tested for HIV and other sexually transmitted infections every six months. When she tested HIV positive, she was 15 years old. She didn’t know what HIV was or what testing positive meant. She thought that death was imminent. “I went out of my head,” she says, “I drank and did drugs. I wanted revenge on those guys [who gave me HIV]. I had unprotected sex without caring. I was a very irresponsible 15- and 16-year-old.”
Her attitude didn’t change until she was 20 or 21. “I started to see that my situation was not the worst. I realized I had to change,” she says. Three years ago, in 2018, she and her mother moved to the United States.
Christina moved here seeking more opportunities. She settled in Alabama, where she first saw a doctor who insisted that she start antiretroviral treatment immediately. She had not been on HIV medication before. Fortunately, she hasn’t experienced any side effects from her HIV treatment. Christina relies on AIDS Alabama and other HIV organizations for support and is involved with the group Trans Latinx Alabama.
Christina says that, although the HIV treatment in the United States has been great, she has had some problems with medical providers. “They’re not very accepting of my situation,” Christina says. “It feels like some doctors are just treating me because they are getting a paycheck, not because they care. They see me as just another patient. They don’t try to make a connection with me, with who I am.”
She feels that some medical care providers have a strong phobia against trans people living with HIV. Also, language poses some challenges. “Sometimes I call, and I ask for someone who speaks Spanish, and they get annoyed with me or just hang up,” she says. “It’s so frustrating, but it’s not an obstacle for me,” Christina adds, “I’m still going to get my treatment and my care.”
Despite such hurdles, she is happy to be living in the states. Christina married her longtime boyfriend on June 9. “Oh my God! It was the most beautiful day of my life,” she smiles. “It was the happiest day. I think of myself as such a strong independent woman, and now, I’m also a housewife!”
The hilarious and smart Daniel G. Garza was born to a Mexican mother and Texan dad in Monterrey, Mexico. “I’m the original Tex-Mex,” he says. His family was very conservative and very Catholic. When Daniel was 3 years old, he and his parents moved to the states, settling in Dallas.
He knew he was gay from an early age. “I don’t remember ever not having ‘I like boys’ thoughts. You don’t know it’s gay,” he says, “you just know you like boys.”
To escape the bullying he faced as a kid in Texas, Daniel returned to Mexico to attend high school and lived with his older sister. He was outed as gay when he was 17. “I had this moment with this boy over the summer. Summer lovin’! But word got around and to my parents,” Daniel says. “It was very dramatic, even for Mexicans. It was over Thanksgiving, so it was like, ‘Pass another turkey tamal, Daniel’s gay!’”
At 18, he moved back to Dallas, fell in love with his first boyfriend and tried drugs for the first time. The romance didn’t last, but Daniel started on a 16-year path of addiction. Cocaine, alcohol, acid, ecstasy and crack were his drugs of choice.
In the summer of 2000, he was living in Houston. “I was still doing a lot of drugs, and that summer, I started to feel a little sick.” He noticed that he was feeling chills, experiencing night sweats and losing weight. “But I thought, Cool!” he says, “I fit into a size 28 jeans—I’m hot!” That fall, the manager of the restaurant where he worked took him aside and expressed concern. “She told me that I looked really sick and I had to go to the doctor.”
The next day, a friend took him to a clinic. “They took one look at me and pushed me to the front of the line,” he says. “They really didn’t think that I was going to make it. I went to the hospital for three weeks.” He was diagnosed with AIDS. “I didn’t really get it. I was selectively naive. I knew that it was sexually transmitted. And I knew there was medication, but that was it.”
Daniel says his naiveté, mixed with cockiness, is what saved him at that serious moment. “I never thought of myself as a victim. It’s like when I was a kid and getting bullied. I needed to change direction, and I did. The same with AIDS,” he says. “I thought, Nope! I’m not going to fall for the fear tactics. You’re not going to put fear in my head because of AIDS.”
Once he was discharged from the hospital, Daniel moved to McAllen, Texas, a border town, to recuperate and started volunteering at the Valley AIDS Council. “That’s when I started my advocacy. I would go and do the typical condom packets for them, just pack them up,” he says. “Then I was given the job to order pamphlets.” One of Daniel’s first projects came about after he noticed that there weren’t enough informational pamphlets in Spanish. “I would call up the companies and say, ‘Hey! Why don’t you translate this?’ So my first advocacy job was getting more stuff in Spanish.”
From there, Daniel seized every opportunity—whether it meant furthering his education, manning a booth or agreeing to do a speaking engagement. “I started realizing that I knew more than I thought I knew.”
In the years since his diagnosis, Daniel has become an amazing HIV advocate. He started by working at local service organizations in Texas, and his opportunities grew. He has been able to use his story, humor and skills as a bilingual advocate to teach people about HIV and push for more information and assets geared toward Spanish speakers.
Daniel got sober in 2007 and now lives in California with his partner, Christian. Daniel’s work as a champion for HIV issues has earned him national attention. He has worked with HealtheVoices, a social media leadership program developed by Johnson & Johnson, as well as the “Positively Fearless” campaign launched by Janssen Pharmaceuticals. As if that weren’t enough, he has a YouTube channel and broadcasts live on social media. He has also acted and directed and performs stand-up comedy.
“God, the universe—they spoil me. I am definitely blessed,” Daniel says. “I am a 50-year-old successful HIV-positive Latino gay man, and I have earned my name.”
Editor’s note: The map of flags accompanying this article has been updated, click here to read more.