Stigma Keeps Many Gay Latinos Off HIV Prevention Pill

Nov 4, 2015
Originally published on December 22, 2015 11:36 am

Earlier this year, Victor Barillas decided to get on the HIV prevention pill called Truvada. When taken every day, the pill is nearly 100 percent effective in blocking the transmission of HIV, even through unprotected sex.

Sitting in the doctor's office, Barillas whipped out his phone and posted a status update on Facebook: Doc, please give me Truvada.

Within minutes, Barillas remembers, his ex-boyfriend had sent him a message.

"And he said, 'Wow, really? You're just being out there and open about Truvada? That's kind of something private.'"

It was the kind of response Barillas had come to expect. He said most of his gay Latino friends looked down on the drug, labeling men who took it as "whores." Why take Truvada if not to be promiscuous, they thought?

Barillas had considered taking Truvada before. As a gay, sexually active Latino, he knew that statistically he was at higher risk than most gay men to contract HIV. The stigma had kept him off the drug. He said it's kept a lot of his gay friends off the drug, but especially his Latino friends.

"Growing up as young children, you're taught family values," Barillas said. "I was actually raised Catholic and was an altar boy for years. I grew up with a mother who was all about having a family, and being a traditional Latino male."

Since the Food and Drug Administration approved Truvada for HIV prevention in 2012, stigma has been one of the biggest barriers health advocates have faced in their effort to get more Latinos to take the drug, which is also referred to as pre-exposure prophylaxis, or PrEP.

Richard Zaldivar runs The Wall Las Memorias, a Los Angeles nonprofit that works with gay and bisexual Latinos. Last year it hosted a community town hall to educate gay Latinos and their families about PrEP.

"There's a lot of fear and stigma still around talking openly about sex and their identity," Zaldivar said. "So if they're not at that point, it's hard for someone to ... tell the doctor, hey I need [PrEP], because I'm an active sexual player."

Stigma is not the only factor keeping Latinos off the HIV prevention pill. Truvada, the only drug currently approved as PrEP, costs $1,300 a month. Though it's covered by most insurance plans and by Medicaid, many Latinos remain uninsured, keeping the drug out of reach. As its name suggests, pre-exposure prophylaxis is a preventive strategy, but Latinos tend to avoid seeing the doctor until they're sick. Many doctors remain unaware of what PrEP is or which patients are good candidates for the drug.

For Zaldivar, however, all of these issues are moot if gay Latinos are unwilling to embrace their sexuality. Being ashamed of who they are makes them less likely to take steps to protect themselves, he said.

Every Tuesday evening, Zaldivar welcomes a couple of dozen men to the converted two-story house in northeast Los Angeles from which he runs his nonprofit. Over food, the guys talk about issues they face as gay Latinos. The meetings are a kind of support group for men grappling with their sexual identity.

It was at one of these meetings, over the summer, that Victor Barillas first told the group that Truvada had saved him.

"Two weeks after being on the medication, I met this man that I began having sex with," Barillas recalled. "And at first we did use protection. And then we didn't."

One morning, the man sent Barillas a text and asked to speak with him by phone. He told Barillas that he'd tested positive for HIV, and that Barillas had been his only sexual partner for months.

Barillas rushed to get tested. He was negative.

"I definitely believe that Truvada kept me negative," Barillas said, "because I honestly believe that, thinking about the sex that we had, that I would be HIV positive."

The night that Barillas shared this story with the support group, he looked over at one of his friends in the room, Joey Ponce de Leon. Ponce de Leon was one of the guys who openly criticized men on Truvada as "whores." But now, after hearing Barillas' story, he was crying.

"I felt extremely bad," Ponce de Leon recalled recently, "because here I was condemning it, and I was kind of like, wow, I could've lost him. And I apologized to him."

Ponce de Leon said it took some reflection to realize that his rush to judge men on Truvada stemmed from his own struggle growing up gay in a traditional, religious Latino family.

"Growing up, I couldn't be that particular person that I wanted to be," he said. "And I knew that I was either going to go to hell, or whatever, if I did do that." The fear of HIV was always lurking.

In Truvada, he said he saw a drug that allowed men to feel more comfortable in their sexuality than he ever did, and he resented it.

All that changed when he realized that Truvada had probably saved his friend. Though he's in a committed relationship and doesn't take PrEP himself, he said he, like Barillas, has become a PrEP advocate.

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The CDC says new HIV infection rates among Latinos have fallen with one exception. HIV is increasing among gay and bisexual Latino men. Health officials want to see more high-risk men taking the pre-exposure pill known as PrEP. Just one pill a day is nearly a hundred percent effective in preventing HIV, but it's a tough sell. Adrian Florido of NPR's Code Switch team spoke to several men to find out why. And a warning - this story contains frank language about sex.

ADRIAN FLORIDO, BYLINE: Since the early 1990s, activist Richard Zaldivar has worked with gay Latinos. He operates out of an old two-story house tucked behind a church in Northeast Los Angeles.

RICHARD ZALDIVAR: Hey, guys. How are you? Nice to see you. Make yourself at home.

FLORIDO: On Tuesdays, about 20 guys come over. They bring pizza, salad, eggrolls, and they sit in the living room to talk. Today, the topic is PrEP. Data show it's not reaching gay and bisexual Latinos even though they are at higher risk for HIV than most other groups. Zaldivar says there are many reasons for this. At this point, only one drug, called Truvada, is approved as PrEP, and it costs $1,300 a month without insurance. Latinos are also less likely to see a doctor for preventive reasons. When it comes to gay Latinos...

ZALDIVAR: There's a lot of fear and stigma still around talking openly about sex, their identity.

FLORIDO: Zaldivar says religion and traditional family values play a big role in this. So does machismo, the notion that Latino men should be hyper masculine. Zaldivar says that for the gay guys he works with, these expectations make it hard to be open about their sexuality.

ZALDIVAR: So if they're not at that point, it's hard for someone then to fight for prevention method and then tell the doctor, hey, I need that because I'm an active sexual player.

FLORIDO: One of the guys at this meeting, Victor Barillas, did ask his doctor for Truvada. The 40-year-old started taking it last spring, and he said so on Facebook.

VICTOR BARILLAS: I posted that I was going in for a checkup, and then at the end, I said, and doc, please give me Truvada.

FLORIDO: Within minutes, his ex-boyfriend sent him a message.

BARILLAS: And he said, wow. He's like, really? He's like, you're just being out there and open about, you know, Truvada? You know, that's kind of something private.

FLORIDO: Barillas says that kind of response is typical. One of his friends, Joey Ponce de Leon, used to talk trash about men on Truvada.

JOEY PONCE DE LEON: I kind of thought, like, you know, they were just going to just have sex with everybody. And just being brought up with lots of strong morals and values, you know, I just have my own feelings about it.

FLORIDO: He says that changed during the summer after Barillas told the story.

BARILLAS: Two weeks after being on the medication, I met this man who I began having sex with. And at first, we did use protection, and then we didn't use protection.

FLORIDO: One morning, the man texted him.

BARILLAS: He said, you know, please give me a call when you get a chance. So I called him, and I said, what's going on? And he said, you know, last night when I was hanging out with my friends in West Hollywood, I got tested, and I found out that I'm HIV-positive.

FLORIDO: Barillas rushed to get tested. He was negative.

BARILLAS: I definitely believe that Truvada kept me negative because I honestly believe, thinking about the sex that we had, I would be HIV-positive.

FLORIDO: Ponce de Leon says he cried when he heard that.

PONCE DE LEON: I felt extremely bad because, you know, here I was condemning it, you know? And - but I was just like, wow. You know, I could've lost him. And I apologized to him, and I apologize again to you. And I am so sorry, you know, that, you know, I thought the way I thought. And I would've hate to lose him if anything were to happen.

BARILLAS: Aw, thank you. Thank you.

FLORIDO: Ponce de Leon says he realizes now why he'd been quick to judge. Within his tradition-bound family, he had never felt safe in his sexuality.

PONCE DE LEON: I couldn't be that particular person that I wanted to be, you know? And I knew that I was either going to go to hell or whatever if I did do that.

FLORIDO: In Truvada, he saw a drug that allows gay men to feel more secure than he had about sex.

So you think you felt a little bit bitter?

PONCE DE LEON: I did, and it was mostly out of just being a hater, just jealousy.

FLORIDO: Ponce de Leon is in a committed relationship, so he doesn't use Truvada. But now he understands and supports others who do. Adrian Florido, NPR News. Transcript provided by NPR, Copyright NPR.