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Interviewer: Thank you for agreeing to do this. I know your schedule is incredibly hectic. I’ve seen some of your movement and travel through social media. It is amazing and wonderful. Please just start by telling us, what is the Black AIDS Institute?
Copeland: The Black AIDS Institute was founded in May of 1999 and we are the only national HIV and AIDS think tank focused exclusively on Black people. Our mission is to end the Black AIDS epidemic by engaging Black institutions and individuals effected by HIV and AIDS. We do training, capacity building, mobilization, information dissemination, advocacy, policy, and provide direct HIV services here in Los Angeles from a uniquely and unapologetically Black point of view. Our motto speaks to our mission, which is “our people, our problem, our solution.”
Interviewer: So, tell me about your tenure at the institute, where you started and where you are now.
Copeland: So, I have a background in public health. I got my bachelor’s degree from UC Berkeley and studied African American Studies and public health. Then I got a master’s in urban public health at Charles Drew University here in Los Angeles. So, I have always been very passionate and committed to working with Black people, and for me that really lied in health and making sure to Black people are able to live their full and healthy lives. After undergraduate school, I ended up working at Planned Parenthood. I was in reproductive health and that’s when I tested my first person as HIV positive. He was a young Black gay man and I remember his response was, “well, I guess it was going to happen anyway” and this idea – the inevitability – that, you know, he was going to acquire HIV. And that really kind of drove me into HIV work. And so, when I found out about the Black AIDS Institute, it was kind of perfect merger for me, thinking about Black folks and working for Black people and also health. [ … ] But really the tragedy is that we haven’t ended HIV. We have all these tools and we know [we] can end HIV and some communities are getting really close. San Francisco and New York are getting really close to ending HIV. But you see these huge disparities – still most Black folks. We see really huge disparities in the south, which is where the majority of Black Americans live. And we see that there are all these intersections that really kind of impact HIV. Homophobia fuels HIV, transphobia, poverty is closely linked to HIV. And we know that mass incarceration, so strictly taking black men out of communities, fuels HIV because [ … ] the way HIV works – it’s an infectious disease – if we have smaller numbers of people when you have a smaller pool of folks, it’s going to move faster. [ … ]
Interviewer: You mentioned San Francisco as kind of a great example of how rates of HIV have dramatically declined. So, talk more about the disparities that might be different between San Francisco, Los Angeles, and Atlanta, for example. What are the differences? And which communities have we seen the climb and which communities we have seen decreases.
Copeland: You can even look at San Francisco and Oakland right there, right across the bridge from each other. But you know, they’re very different epidemics. I think in San Francisco, they have done a really great job of surveilling HIV. So, they are able to see, when there are new HIV infections. [ … ] It may be focusing on giving people resources when there are substance abuse issues or mental health challenges that folks are facing. But when you look across the bridge in Oakland, the issues that folks face when they’re not getting into care are very, very different. If you don’t have housing stability getting into care or getting tested is not going to be the highest priority. If you’re experiencing high rates of intimate partner violence, there are actual barriers for you getting into care or even kind of (thinking about) what is most important to you when it comes to kind of survival.
So those are issues that, you know, particularly when we see Oakland, we think about Los Angeles – when you look at how black people fare – we’re always doing worse for the most part. [ … ] So, we’ve seen decreases in HIV infection rates for Black women, but we still see perinatal transmission, which is really interesting. So perinatal transmission is when women who are living with HIV have a child and the child is born with HIV. And so, we particularly see it in a handful of states in the South. And the thing with that is we know how to end perinatal transmission. What does that mean for our healthcare system that, that women who are having children aren’t being tested. [ … ]
We also still see AIDS deaths happening across the country and that it’s disproportionately impacting Black people. And at this point, we have really great medications for HIV. People should be able to live long and healthy lives with HIV if they’re in care and if they’re virally suppressed meaning that their viral copies of HIV are so low, they’re undetectable meaning there’s no kind of tests that we have can actually pick up the virus.
Interviewer: So that means there are several layers of prevention that are not happening, particularly for Black people. How are Black women faring compared to counterparts?
Copeland: [ … ] It doesn’t really compare — Black women are still disproportionately impacted. Of the number of women who are living with HIV Black women are 60 some odd percent of those folks. And then when it comes to viral suppression, Black Women are not having viral suppression at the same rates as counterpart.
Interviewer: Which means most likely they’re not getting the medication?
Copeland: Not getting medications, and clinicians not believing Black women and not providing high quality services to Black women. That could include a woman going in and saying, “this medication that I have is really making me really nauseated, it’s not working.” And the clinician not listening to that and not saying, you know, “let’s try some other new medications” or whatever it may be. Clinician interaction is a big piece of it. [ … ] many Black woman describe experiences of going to a clinician and saying, “I want an HIV test” and the clinician saying, “why?” or saying, you know, “I don’t think you need that” or “are you sure?” right. So, sort of questioning Black woman needing HIV tests, and then that fuels the stigma around it. We have such high infection rates within Black communities that we’re all at risk for acquiring HIV. And so, this idea that there’s only a certain type of person, this prototype of a person, is absolutely inaccurate and really stigmatizes HIV.
Copeland: And then there’s this concept, of linking to care. So, say you test positive, how do you then link to care? Because care is a huge part of living a long healthy life with HIV. But there are so many barriers that can happen. [ … ] whether it’s needing childcare, whether it’s being able to take off work, whether it’s being able to actually have stable housing, substance use and mental health that needs to be responded to. That all of these things have to be considered and we have to have response systems for them to be able to accurately or effectively link people into care and retain them as well. And then say you test for HIV and you test negative, part of the tools that we have that can end HIV are biomedical tools. So, for people who are HIV negative, we have PrEP – preexposure prophylaxis, which is a pill that people can take daily to prevent HIV. And it has a 90 plus percent success rate of protecting folks against HIV. But Black women in particular don’t know about PrEP. We go to Essence music festival every year and we do HIV testing with the state of Louisiana. We work with our partner, Kaiser Family Foundation with a campaign that we cofounded called “Greater than AIDS” and so we test maybe like a thousand, some odd women over Essence weekend. And for the past four or five years, we’ve done a survey of around three to 500 Black women, kind of assessing their HIV knowledge and awareness. And, we started doing it when PrEP first came out a few years ago and Black women had never heard of PrEP. And they were actually really upset that they hadn’t heard about it because they said, you know, “how can we have this tool and we’ve never heard of it?” but really interested[ … ] this past year we had more Black woman who knew about PrEP than ever before, but they really had concerns. They were like, you know, “my clinician hasn’t talked to me about this … I want to know more, but nobody’s having these conversations with me.” And so that’s, you know, another barrier. For many women it’s a great option for them but they don’t have clinicians that are talking to them about it. They don’t have anybody talking to them and saying, this is a potential option for you if you want to stay HIV negative. And, so for us, as we think about Black women, it’s thinking about how we change some of these cultural norms that happen in our community thinking that HIV is something that only gay men should be thinking about. And also understanding the context that HIV happens and understanding the risks that particularly Black women are at for acquisition of HIV.
Interviewer: So, doing some of that work getting some of these messages out there and using popular culture, using representations, using performance – that’s something that the Black AIDS Institute has been really successful at.
Copeland: Yeah. So, we at the institute … a piece of our model is thinking about how we change cultural norms within Black communities. And so, we work a lot with Black civil society in that effort. And within Black civil society we work a lot with media and Black celebrities to really try and kind of change cultural norms. [ … ] from early on in the epidemic, we’ve worked with large celebrities like Magic Johnson. Early on we’ve worked with celebrities like Sheryl Lee Ralph, and Vanessa Williams. Particularly in the 90s and 2000s to do speaking events. We have a Black Hollywood task force that we use to develop PSA and recordings. And that’s really been kind of a huge success.
Interviewer: There are probably change agents and people of influence and industry who might not yet be connected to the Black AIDS Institute. If you were to sit down with someone else who had a similar platform interested in these issues of Black women, what are some of the things that you would want them to tease out? What are some of the nuances that you would want them to address in a representation?
Copeland: Some things that are really important are power dynamics in relationships and particularly relationships that women have with our lovers. I think that within that, a huge piece of it is intimate partner violence and how that affects and influences women and impacts this really strongly. And I think if you go even further than intimate partner violence, it’s kind of what does self-esteem look like? What unhealthy relationships are in families and in school and how that influences individuals long term is really important.
There’s also kind of just the biomedical piece around Sexually Transmitted Infections as well. We know that STIs are a biological kind of fire when it comes to HIV and we have high rates of STI’s in our community as well. And so I think that’s an important piece of it.
Interviewer: And also just women as receivers. Any receiver is usually more at risk, male or female, but generally that’s something that affects women.
Copeland: Yeah, receivers that’s a good term for it. And then mental health and substance use are definitely big ones as well. But what happens when you’re kind of going through those things, those are the things that are the most important. It’s really hard to negotiate condom usage when you are depressed or you are going through an episode.
Interviewer: Or being abused.
Copeland: Or being abused. And so those are important conversations or things to think about when it comes to our platforms. There’s also kind of what it means and how much mass incarceration affects women and our partners. And so we know that when you take out these partners from our communities …
Interviewer: Particularly for heterosexual women.
Copeland: Particularly for heterosexual women. We also know that, concurrent partnership, really fuels HIV for Black woman as well. [ … ] For many Black women, there’s no number one risk for HIV. So what we call that in the public health field is non identified risk. So for here in Los Angeles, the number one risk for HIV acquisition for Black women is non identified risk. So you can’t say it by number of sexual partners. You can’t say it by where you live necessarily. You can’t say by …
Interviewer: Income? Education?
Copeland: There’s no identified risk.
Interviewer: So does that mean that a Black woman with a PhD and a great job is equally at risk … … as a Black woman who has a GED and a low wage job?
Copeland: Absolutely. That’s exactly what it means. For many different reasons, nothing that we can say is going to help us predict when and how Black women acquire HIV, which essentially means that we have to always be thinking about HIV. We have to always be responsive to it because it’s not just one type of person that acquires HIV.
Interviewer: Not even age. Because our older Black women are sexually active and also at risk. Correct?
Copeland: Absolutely. In some states you see increases with age. Especially, I think when you get up into like the fifties and sixties, that you see these increases in HIV. And so I think that overall some of the messaging and the platforms that when people are thinking about their platforms is that this is for Black women in particular. This is all of us. And that’s just cis women. If you want to think about trans women I think the current estimate – and we don’t have a great number right now because data is not collected on trans folks very well – but it’s expected that I think 60 plus percent of trans women will acquire HIV within their lifetime. And all of that is really kind of just related to being trans and having to survive.
Interviewer: I want to talk a little bit more about your role as CEO and the beautiful transition between the founder [Phill Wilson], a Black gay man activist, and that transition (of leadership) to a woman. A cis-gender, heterosexual Black woman and how the leadership encompasses all of these needs that you talked about. What are some priorities for you as you’ve taken this torch from such a brilliant man and now addressing current issues?
Copeland: Our founder was so intentional about this transition. What does it mean to be someone who is HIV negative leading the only Black national HIV and AIDS think tank. For me it is a signal of how we are supposed to all be doing this work, And that this is not something that just gay men should be doing. This is not work, that just people who are HIV positive should be doing. One of the core principles of mobilization is that people who are closest to the problem have the solution. And so we have a core group of folks and core leadership who are people who are living with HIV. We have, you know, over half of our staff are LGBTQ folks, which is going to remain an important principle for us. [ … ]
Interviewer: For “all of us”– meaning all of us in …
Copeland: … the Black community. And I think that’s the only way we’re going to end it. That it’s all of us coming together that it’s HIV negative people, it’s cis, it’s trans folks, it’s as all of us coming together. And that in coming together, we have to center folks, right?
Interviewer: Center who?
Copeland: I think for us it’s important to center people who are living with HIV. I think it’s important to center trans folks, it’s important to center LGBTQ folks. I would say the biggest centering for us are people who are living with HIV, because those are the folks who are most impacted by HIV. Within our board it’s important for us to have people who are living with HIV … Within our staff we have people who are living with HIV and then within our constituents. So we’re a think tank, but we have networks and coalitions across the country who do this work as well. I’m a Black woman here living here in Los Angeles and we’re a national organization, but we have folks in Florida and Georgia and North Carolina and experiences that they have are important to elevate and lift up as well. Within the HIV and AIDS world, we talk about regularly the fact that we have the tools to end HIV but Black folks don’t actually know that. And so [ … ]we started working more in traditional HIV spheres: the federal government, the CDC, National Institutes of Health, working with HIV and AIDS organizations that get funding to do HIV work, working with community clinics … But one of my big focuses is making sure that Black Americans know about the tools to end HIV.
And so that means working with media much more. Working with traditional Black institutions, Black elected officials, working with Black media, working with Black fraternities and sororities, working with Black civil institutions, Black professional organizations. So that Black people everywhere, people who are, you know … working at the post office know what PrEP is. They know about viral suppression. And so for us, that’s a really big focus. And so we’re doing a lot through media … working through social media, and working with Black celebrities to have these conversations across the country. So that Black Americans know about the tools to end HIV. We’re also really focusing on making sure that institutions know how to serve Black folks. We can make sure that Black Americans know about the tools, but then if they go to their clinician and they’re like, hey, I want to get PrEP. And the clinician says, I don’t think PrEP is a great thing for you, it negates the work that we’ve done to ensure that Black people actually know about these tools. Black people going in to see their clinician, first of all, is a revolutionary act because the medical mistrust that Black folks have is …
Interviewer: Well documented.
Copeland: … well documented. And of course we should have medical mistrust.
Interviewer: And that sounds like that is also a great place for intervention in terms of media representations. Not just the part of Black people getting the information but also representations and storylines that deal with medical institutions. The person on the other side of the counter and the education that they need to have on how to be fair and how to be just in their treatment of Black-bodied people.
Copeland: Absolutely. We talk a lot about cultural humility, which is a step above cultural competence. Cultural humility is treating the individual. When clinicians have cultural humility and their approach, you see high levels of client satisfaction as well.
Interviewer: I am really looking forward to thinking differently after this interview, about the way I teach about Black feminist work. Thank you so much.
Acknowledgements
The author extends gratitude to Raniyah Copeland and Wendell Miller at the Black AIDS Institute.
