One of CBAM’s areas of focus is HIV prevention, especially in the context of addiction and communities with health disparities. We sat down with CBAM staff member Chris Blades to get an in-depth perspective on our prevention work with MSM (men who have sex with men) of color. In this 3 part series, we’ll delve into the challenges and experiences of working with the LA community to prevent the spread of HIV.
Part 3: “We hear it a lot: ‘I don’t want to be a guinea pig.’”
On the other side of it, for those who are HIV negative and don’t know what PrEP is, how do you go about bringing that up to people and what are the reactions you get?
It varies. Typically the conversations I have with people in the clinic differ from the conversations I have outside of the clinic. At the clinic, since people are meeting with the clinician and reviewing consent forms first, they’re already getting information about it, so there is some knowledge and understanding of the medication. So going into it, the conversation is different. Whereas if I were talking to someone off the street, who has no idea what it is and the purpose of it, then I really focus on the purpose of the medication, how effective it can be and stuff like that. What happens is a lot of times guys, particularly black men, have an issue with taking a medication for preventative reasons. We hear it a lot: “I don’t want to be a guinea pig” or “I don’t want you guys giving me this medication when you don’t know what the long term side effects are.” But it’s really about looking at the individual and what their risk is and telling them that they have options. Saying, “You don’t have to be on the medication but this medication is an option to you.” Some guys are a little bit more receptive to that and we do spend a lot of time discussing possible side effects and focusing on how to incorporate the medication into their daily routine. We’ve had a lot of guys say that the medication is going to cause this or that side effect, why should I take this medication if I only have 2 sexual partners, etc.
How often do you see people who are enrolled in the HIV prevention study?
On a monthly basis for the first four months and after that every 3 months.
Do some people change their minds and decide they want to try PrEP?
Yeah, we have some guys who are a little unsure about being on the medication initially, and then after they meet with us a few times and do some more research they decide that they want to be on it. Some guys decide they don’t want to be on it at all. We have had some guys who started the medication right away and later decided they didn’t want to be on it anymore because of side effects or because they were no longer at risk for HIV. From their point of view, there was no point of taking the medication if they considered themselves not at risk, which is understandable.
What are the misconceptions about HIV that you hear from people?
In this community in general, there is a lot of stigma, not necessarily just around HIV, but about sexual preferences and roles that people play in sexual relationships. People feel like they don’t want people to know that they’re the receiving partner or “bottoming,” and they say they’re a “strict top,” and then your counseling session is focused on that and you’re not really giving them the information on how to reduce their risk on HIV if they were the bottom if they’re telling you they’re strictly a top. It’s because of their feelings about that particular position. People get so caught up in the idea of being a top and how it sounds or how it comes off and that gets in the way of them really retaining information on how to prevent HIV in general, not just as a top but as a bottom. I think another thing is just how people view HIV. Some people look at it being HIV positive as, “If I have it I’m going to die,” or “I can’t tell anybody” and “my sex life is over,” or “people are going to look at me differently” and things like that. I think the whole immunity thing is something we’ve been experiencing a lot here. A lot of guys say they have some special gene that causes them not to become infected with HIV. With the guys who are like that, their sexual risk is really high. They have multiple partners and are doing a lot of things because they think they are immune to HIV. It’s very dangerous.
Do you think the biggest barrier for people to get care, either if they have HIV or to prevent HIV, are these misconceptions or do you think it’s a mix of not enough resources, not enough knowledge, not enough motivation?
I think it’s multiple things. I think there are still a lot of people who don’t feel comfortable talking about HIV let alone their sexual practices. I think a lot of people don’t feel comfortable going to certain agencies/testing sites because they are fearful of who the counselor is going to be or who the staff members are, and who is going to see the results. That has been an ongoing thing. There have been a lot of times when you see people who work in this field out in the community that are sharing information, so a lot of people lose trust in that and that’s why some people don’t like to get tested or go to certain agencies.
I don’t think there’s a lack of resources, I think there are a lot of places you can go to get tested for HIV, just in the past 5 years there has been a lot of money, I think it is changes where the dollars are going more to treatment than to prevention, however I think there’s still a lot of agencies and places that offer free HIV testing, and we have billboards, and we didn’t have that before.
Is there anything else you wanted to add?
I was here [at CBAM] for three years and some months and obviously really enjoyed the work I did here, and it was all focused on HIV prevention, and then I went down to Harbor UCLA and was working with the HIV medication there, and I saw a whole different side of HIV. Not the prevention side but the treatment side. Seeing the faces of HIV and seeing how young the guys were that were not just going to the HIV specialty clinic, but also being admitted to the hospital for HIV related reasons—that gave me a totally different outlook on HIV as a whole. I used the information that I learned there in my counseling sessions, and really to paint a picture to these young guys of what their lives could look like if they continued down a certain path.
Stay tuned for more CBAM blog posts and interviews.