“Let me just tell you about my first client,” says Jean Hernandez, “because she exemplifies all the barriers.” Hernandez, originally from Puerto Rico, is the dynamic and bubbly program coordinator for the Alabama Latino AIDS Coalition at AIDS Alabama in Birmingham, where she’s been working since 2011. She’s discussing obstacles that Latinos in the South face when it comes to HIV.

“First,” she says, “my client’s partner was lost to AIDS, and she didn’t know her status. This was 2011, almost 2012. She went to the clinic for testing, and they told her to bring somebody with her to talk Spanish.” Hernandez’s client was an immigrant working as a babysitter in her community and took her neighbor to translate.

Elias Diaz

Elias DiazKat Carey

It was the neighbor who was first told about the client’s HIV-positive status. “She told me, ‘If I’d known they were going to tell me something like that, I never would have brought my neighbor!’” Two barriers: language and confidentiality.

Hernandez took over as translator for her client at medical appointments. (In fact, 11 years later, with 60 clients—almost 200 when you include the families, as the coalition does—the majority of Hernandez and her team’s time is spent translating for clients.)

Hernandez’s client also had financial worries since her late partner had been the primary breadwinner. Because her neighbor knew the client’s HIV status, she now could no longer work as a babysitter. Barrier: financial stability.

Hernandez’s client also had diabetes, and by 2014, her kidney function was deteriorating. “She began to feel very ill, so I went with her to the emergency room,” she says. “I was doing all the translation, and then we finally get to the nurse.”

Jean Hernandez

Jean HernandezCourtesy of Jean Hernandez

Hernandez told the nurse that she was going to translate, and the nurse sternly asked the client how long she had been in the United States. Hernandez took a breath, translated the question to her client and told the answer to the nurse: Her client had been living here for six years. The nurse snidely remarked, “She’s been living here for six years and still hasn’t learned to speak English?” “In another space and time,” Hernandez says, “I would’ve lost it and kicked her! But,” she laughs, “I had to maintain my cool for the client.” Barrier: discrimination.

Now, in 2022, Hernandez’s client is in need of a kidney transplant. Since her client is undocumented, she cannot be on the transplant list. Hernandez met a doctor who talked about how people living with HIV can be organ donors to other people living with HIV. “I got so excited! But because of where we are, we have to be careful; we have to be silent,” Hernandez explains. The doctor informed Hernandez that her client would have to find her own donor once they started doing the paperwork. Because the client is undocumented and uninsured, she will not be able to get the surgery.

Even though the client receives Ryan White Program benefits and gets help from the AIDS Drug Assistance Program, she doesn’t have the health insurance to cover the procedure, hospital stay and recovery. Not only that, but the donor, too, must have insurance to cover their side of the tests and procedures. “We’ve been dealing with that, and my client is getting sicker. A transplant is sometimes more than half a million dollars.” Barriers: immigration status and health insurance.

Hernandez’s story about her first client illustrates just some of the barriers that Latinos face regarding HIV, particularly in the Southern United States. As defined by the U.S. Census Bureau, the South includes Alabama, Arkansas, Delaware, the District of Columbia, Florida, Georgia, Kentucky, Louisiana, Maryland, Mississippi, North Carolina, Oklahoma, South Carolina, Tennessee, Texas, Virginia and West Virginia.

Latinos make up about 19% of the U.S. population. The Centers for Disease Control and Prevention (CDC) estimates that of the 34,800 new HIV cases in the United States in 2019, 29% were among Latinos. Of these, male-to-male sexual contact accounted for most new cases; indeed, 85% of new male cases were among cisgender men who have sex with men. For cisgender women, 87% of new HIV cases were from heterosexual contact. (Transgender and nonbinary people were not specifically included in the statistics.) Roughly 55% of all the new HIV cases in the nation were in the South, and almost a quarter of those were Latinos. (Due to the impact of COVID-19 on HIV testing, services and case surveillance, more recent data are not currently available.)

Elias Diaz knows all about the challenges facing Latinos with HIV. Diaz is a Mexican-American man living with HIV in the border town of Eagle Pass, Texas. “It’s literally in the middle of nowhere,” he says. A native of Eagle Pass, Diaz is the cofounder of Eagle Pass SAFE (Sexual Advocacy for Everyone), an LGBTQ nonprofit serving the rural communities of South Texas. He’s also a compliance officer and mental health clinician for Maverick County Hospital District and a member of the Eagle Pass City Council.

“One of the biggest cultural considerations with regard to HIV is that the Hispanic culture is so family-focused, for better or for worse,” Diaz says. “We can’t move forward without our family. We see that in the way we internalize homophobia. We see that in the way we deal with each other as gay men.” He says that one reason many Latino men who have sex with men are resistant to taking pre-exposure prophylaxis (PrEP) is the possibility of family rejection. “Many believe the family would not be OK with that, just like they’re not OK with contraception.”

“The Hispanic culture is very centered on machismo, very centered on the manly man,” he says. “Many believe that being a man is a God-given gift, so why would you slap your family in the face by being openly gay?” Moreover, Diaz says conservative religion is important in many Latino households and can stifle a person’s authenticity. “Many Hispanics are Roman Catholic. I grew up in a Pentecostal home. Many people use [religion] as a crutch, an excuse to be able to disapprove of others.”

Adding to the religious aspects is the taboo of sex. “The fact that we can’t talk about sex affects everything from teen pregnancy rates to new HIV infections. This lack of conversation leads to tangible results and health outcomes,” Diaz says. “Our silence can be deadly.” Barriers: family, religion, communication.

The fact that we can’t talk about sex affects everything.

Arianna Lint, a passionate transgender educator and advocate originally from Peru, now lives in Miami, where she runs Arianna’s Center. The center serves trans Latinas and anyone in the trans community who is especially vulnerable. For Lint, the biggest challenge for trans people when it comes to HIV is stigma.

“I am a trans Latina,” Lint says. “I am from the South. I am living with HIV. The stigma is so big, so strong in this area, in South Florida. Thank God, things have gotten a little better. We have trans people being more open about their HIV status and PrEP and everything.”

Another challenge that she sees is the lack of representation. “People know we exist,” Lint says, “but we’re not at the table. We’re not in the conversations.” She talked about this with U.S. Assistant Secretary of Health Rachel Levine, MD, the highest-ranking trans person in the federal government, on the doctor’s recent visit to South Florida. “We talked about immigration status barriers, access to health care, language barriers.” She went on: “If we don’t talk about this to the people who have the power, who are at the tables, we will always be behind.”

Lint also pointed out that many programs aren’t tailored for the South. “Programs from the West, like from Los Angeles or San Francisco, they’re good. But working in California is so different from working in the South.” She mentions that in states like California or New York, the government has programs and funding set up to support trans service organizations and trans people. “The politics, the demographics, all these things are so different in the South,” she says. “In Florida, they want transgender people to disappear.”

To address these issues, barriers and more, in 2007, the Latino Commission on AIDS (LCOA) launched the strategic program initiative Latinos in the Deep South. The program began with seven states: North Carolina (where the program is based), South Carolina, Alabama, Georgia, Tennessee, Louisiana and Mississippi. In 2019, the program changed its name to Latinos in the South and added Texas and Florida to the ranks.

Joaquin Carcaño, director of LCOA’s Southern health policy, gave an overview of the work that Latinos in the South is doing. “We do capacity building, working with organizations, health departments and other health providers to engage our community,” he says. A component of that is providing language justice work and training the providers and community members themselves. “Language justice is everything from Spanish to English,” he says, “but also gender-affirming language, first-person language, really just supportive, nurturing language across the board.”

“We also do leadership institutes around advocacy,” Carcaño continues. “We did a leadership institute around language justice, specifically working with both people who are working in HIV but also interpreters who are looking to jump into HIV and other sexual health work.” The program is also deepening the advocacy and policy work that is part of its mission, specifically HIV decriminalization, immigration, issues related to the LGBTQ community, the anti-LGBTQ bills being proposed throughout the South and Medicaid expansion.

“These are specific things happening in the South where they’re hitting the communities harder because of the political environment, the lack of community or community support,” he says. “We’re really thinking holistically about how our communities are impacted.”

Jessie Claudio, the program’s community-building manager, commented on how Latinos who are marginalized because of language, immigration status, financial insecurity or a combination of factors are especially vulnerable and can become overwhelmed when dealing with the health care system.

“As Latinos in this nation, we already realize that there’s a racial struggle. When you go down South, it’s even more intensified,” Claudio says. “Those who are Latino and have an intersection with identity, whether it’s gay, bisexual, lesbian or trans, have to keep in mind that we are in the South. And so not only are you having to deal with the lack of Spanish speakers, the lack of Hispanic and Latino representation, but then also in the few spaces that we do have, it’s not always affirming and welcoming for individuals.”

Latinos in the South conducts research into what both Latinos and LGBTQ people need. “We’re trying to hear what’s happening,” Carcaño says. “How are you impacted? What are your experiences navigating care? How about PrEP? Are you receiving HIV care and testing across the board?” Last year, LCOA completed a mental health substance use assessment for Latinos in the South.

The hurdles and barriers Latinos living in the South face are many, but advocates across the Southern states are meeting these challenges head-on. Not only that, but they do it with compassion.

Diaz says there have been major changes to the landscape of the small rural town of Eagle Pass. “Last year, we flew the Pride flag over city hall for the first time. I’m hoping that the Eagle Pass that I grew up in doesn’t exist anymore,” he says. The nonprofit organization he runs, Eagle Pass SAFE, is literally a safe place for people in the LGBTQ and HIV communities to find family. “They’ve started a Del Rio chapter, and they’re about to start one in Temple, Texas,” he says. “Rural towns all across Texas are noticing the work that we’re doing and the validity in the work and wanting to create their own SAFE chapters.”

Hernandez talks about another client of hers who volunteered and interned as part of her team at the Alabama Latino AIDS Coalition: “I just found out about this from him. Years ago, I had put the Latino AIDS Coalition page up [on Facebook], and he saw it, and that’s why he decided to move from Mexico to Alabama.” He had seen that there was an HIV program for Latinos in Alabama and knew he’d have family there. And when he got his citizenship, the first thing he did was go see Hernandez. He asked her, “Help me fill out the application to vote.”

“And that gives me hope,” Hernandez says, “because we’re heading in the right direction. We’re saying, ‘We’re here.’”

Correction: An earlier version of this article stated an incorrect percentage for the Latino population in the United States.