Persistent stigma creates barriers to modern HIV prevention methods
· News-MedicalFor decades, HIV (human immunodeficiency virus) has been surrounded by fear, misinformation and stigma.
Question: What drew you to researching and advocating for HIV prevention and stigma reduction, especially in Latino communities?
Short on time? Here's what to know:
Answer: I identify as a gay Latino scholar. I grew up in a very rural town. My dad is from Puerto Rico. Growing up, I saw firsthand the stigma surrounding being gay and less masculine. Coming out as somebody who was gay later on in life and not really being well educated in HIV, there was a lot of stigma, a lot of fear that I held earlier on. Now, I want to be able to give back to my community.
Q: How have you seen or experienced education around HIV prevention and care evolve over the past 20 to 30 years?
Now, we have things like pre-exposure prophylaxis (PrEP), approved in 2012 for use among high-risk populations, which was a pill that you could take once a day for the prevention of HIV. (Next), we have injectables that are once every two months. They just approved one that's once every six months.
One of the most prevalent prevention methods for STIs (sexually transmitted infections) were condoms or dental dams. But now we have an additional tool for our toolkit, which is doxy pep. So if you feel like you've been exposed, you take doxy PEP and it reduces your risk of acquisition. Not by 100%, but in a meaningful amount to reduce STI diagnosis. There have been a lot of really fabulous advancements that have happened since 2012.
Unfortunately, because our education system doesn't want to promote sexual health education, let alone update (the curriculum), people don't really know how to prevent STI, HIV acquisition, so they constantly are living in fear when consensual sex is something that folks should be enjoying.
Q: Why is access to PrEP so important?
A: It is an excellent tool for reducing the risk of HIV acquisition. There are definitely populations that have higher risk of HIV acquisition: men who have sex with men, people who are injecting drugs, and at-risk heterosexuals. This might be folks who are engaging in sex work; this might be folks who are engaging in sex with somebody that might have HIV. It's so important to have access to PrEP because you're no longer relying on making sure that your partner is wearing the condom appropriately. You're taking charge of your own health.
Q: Despite these medical advancements, gay and bisexual men continue to make up around two-thirds of new HIV infections in the U.S. What are the barriers that contribute to this?
A: Right now, PrEP awareness is fairly good among men who have sex with men. So that means our campaigning for those folks who were at highest risk for HIV acquisition at the early days of PrEP has been working. Now, the problem is whether they perceive that they are eligible for PrEP. So you might have some folks say, "I'm not eligible for PrEP. I only have sex with my partner." Just because you are within what you perceive as a monogamous relationship doesn't necessarily mean that is what is happening - take that for what you will. So there's this lack of perception of HIV risk.
And then there might be discomfort. There used to be this PrEP stigma of "People who are on PrEP are more promiscuous." And I think that some of that is still prevalent. One (barrier) for folks who are on the down-low or still in the closet is the association of using PrEP with being gay, because it was so well marketed for men who have sex with men.
Then, you go in to talk to your doctor. That's another potential barrier. When I first got on PrEP, my doctor didn't know what PrEP was - and this was an infectious disease doctor. A lot of doctors don't know a lot about PrEP. They don't think that it's within their purview.
What is probably the biggest barrier for folks and particularly what we're seeing now with significant cuts to CDC funding and federal funding is cost. The Biden administration had made it so that Medicaid and other insurance companies had to cover PreEP. But now what we're seeing is that while some of those policies still remain, a lot of the funding to support routine STI testing that was part of PrEP care is no longer there. So now, folks are having to pay out of pocket.
Q: It's really disheartening that there are some doctors that are not familiar with PrEP. Say I wanted to start taking PrEP. How might you recommend I go about talking to my doctor?
A: We did this project called My Data, My Choice, and we interviewed providers, patients and care coordinators. We saw that often the provider is the one making the decision of whether you're at high enough risk for HIV for you to be prescribed PrEP. So, regardless of what the CDC recommendations say, which is any sexually active adult is eligible for PrEP, they are making the determinations of what questions they ask you and whether they even bring up PrEP as an option.
If you wanted to get on PrEP, that starts with talking with your provider about the sex that you're having, which can often be a difficult topic. But (you could) say, "Hey, I heard about this thing called PrEP, and I'm interested in hearing a little bit more about it."
Q: One in 3 people who received an HIV diagnosis in 2022 identified as Hispanic or Latino. Can you speak a little bit more to the unique challenges that Latino communities face around HIV prevention, testing and care?
A: A big one is language. Despite having translators within health settings, often you can't really translate culture. A lot of our systems are built for folks who speak English. Providers mainly speak English, and you'd be lucky maybe if there's one or two folks that are speaking Spanish to you, and it's not necessarily your provider. You might not necessarily have the language that you need to be able to ask your provider about what PrEP is, because you're like, "I don't know the medical terminology. I don't know."
The second is for our immigrant population. Often, some don't have insurance, so they can't get coverage for PrEP. And while there are programs to help cover PrEP for those who don't have insurance, those are often limited and fall short of covering the actual costs that it takes for somebody to get on PrEP. You have to think - it's not just getting the pills; it's the co-pays, the lab work, the transportation to get to and from an appointment. And then, anecdotally, when we started seeing an increase in ICE raids, people were afraid to go anywhere institutional because nobody felt safe.
Q: Many people grew up in environments where topics like these weren't discussed - especially in multigenerational homes. How do you think someone in that position can start having more open, supportive conversations around HIV and sexual health?
A: I would never encourage anybody to stand up to somebody who makes them feel unsafe - not even just physically, I'm talking about financially, emotionally, etc. So I often understand why people will not say anything or maybe go into a coping strategy for the sake of their safety.
I would say: Find people within your social network, even if it falls outside of your family. People definitely mention their families, but they also often mention their coworkers, friends. They serve as somebody they can talk to outside of family.
You can still have familismoA core cultural value in Latino and Hispanic communities that prioritizes strong family loyalty, tight-knit closeness, and mutual obligation toward both nuclear and extended relatives., but perhaps think about extending that concept to friends and other support.
Q: Say we are the friend or the coworker who wants to be more supportive of somebody trying to navigate getting HIV prevention or care. How can we help?
The best thing you can do is promote going to get the services that you need - regular HIV testing, STI testing, PrEP use, and encouraging that, welcoming that, and seeing that as a good thing. Breaking the stigma around sex, sexuality, and STIs - it's nice to just have somebody to talk to.
Q: What gives you hope for the future of HIV prevention and stigma reduction?
A: Seeing that we have gone from HIV being a death sentence in the '80s to now, where people live long and healthy lives with HIV, when people are on their HIV medications and are virally undetectable, they can't transmit the virus. That's really what's giving me hope: We continue to make advancements in that we need less and less injections or hassle to prevent the acquisition of HIV. That's helpful in the times where HIV budgets are being cut.
Biography :
Angel Algarin is an assistant professor at Arizona State University's Edson College of Nursing and Health Innovation. His research focuses on the impact of social stigma on HIV care and prevention, with particular attention to health disparities affecting Latino communities.
As a National Institute on Drug Abuse K01 awardee, Algarin is studying how intersectional stigma, coping, resistance and resilience influence methamphetamine use and factors affecting PrEP uptake among Latino men who have sex with men (MSM). His work aims to better understand barriers to HIV prevention and contribute to efforts to end HIV by 2030.
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