Clinical Care: HIV/AIDS

Moderator: Alexandra Walker, Director of Digital Communications, National Association of Community Health Centers

Alexandra:. Welcome to Health Centers on the Frontlines, the podcast of the National Association of Community Health Centers. Today is the third and last in a three-episode series we’ve been doing about an epidemic that the nation’s health centers have been battling for decades: HIV and AIDS. PrEP access and use remain unequal in the United States, with women overall accessing it at a fraction of the rates of men. Meanwhile, one in five new HIV cases annually occurs in women. The overwhelming majority of Black women. Transgender women specifically, are at an even greater risk for HIV acquisition and oftentimes lack access to competent care to access primary care. When we think about health centers and all the work that is done with Black communities, we cannot leave HIV prevention and care for Black women out of the conversation. To discuss today, we are joined by a panel of experts, Dr. Keosha Bond, Assistant Medical Professor at the City College of New York. Tori Cooper, Director of Community Engagement for the Trans Justice Initiative at Human Rights Campaign, and Dr. Latesha Elopre, Associate Professor in the Division of Infectious Diseases at the University of Alabama at Birmingham. We start this conversation about ways that health centers can improve the engagement of Black cisgender and transgender women in HIV testing, prevention, and care. So if we could start with you, Latesha, how can we improve messaging about HIV prevention and care to improve acceptance of services among all Black women?

Latesha: Thank you. So, my name’s Latesha and my pronouns are she and her, and I am really excited to be able to talk about this topic. I think that when we’re talking about access and we’re talking about it for specific populations, we have to do it in the framing and the understanding that access is not equitable to begin with. So number one, there is a system-level barrier in regards to who’s able to receive the services. So when we’re understanding why, we’re seeing inequalities in regards to certain geographic locations. We’re talking about things like being in a non-Medicaid expansion state, having poor public transit opportunities available to you where you live, being impoverished, and being a victim of systemic racism, those are all barriers that communities of color face a lot of times on a day-to-day basis that make access difficult. But when we’re talking about specifically, how do we improve messaging and understanding around PrEP and HIV testing and prevention, I think that we have to do it from a framework where we’re not talking about risk, but we’re talking about health.  And that’s something that we haven’t been doing well in regards to public health in general. So I’ve been very excited, I think, where a lot of conversations have been moving and shifting, because right now if you were to ask many people in America right now, do you think you’re at risk for HIV? Should you be tested? They would say no. And based on how we’ve defined risk from a public health standpoint, you know, the answer actually would be not based on CDC guidelines and recommendations, a lot of times would put people, quote-unquote, at risk is nothing more than where you live. And that’s social determinants of health that are currently impacting you. So, I think we just have to change our messaging, be more sex-positive, be more health-focused and oriented, more talking about HIV testing, PrEP, and messaging. 

Alexandra: Thank you. And turning to you, Tori, thank you for joining us. What are some of the things that you believe health centers can do to improve engagement of Black, cisgender, and transgender women, HIV testing and prevention, like PrEP?

Tori: Well, thank you for having me. My name is Tori Cooper and my pronouns are she and her. And I’m a Black trans woman. So I speak on behalf of a lot of women who have similar backgrounds as I do. We’re Black, we’re transgender, we live in the South. One of the things really kind of going along with what we just heard, Black women, regardless of how you got to your Black woman, how you got to your womanhood, we often put others’ needs ahead of ours. We trust people, perhaps, who don’t deserve our trust, and yet we’re distrustful of medical systems. And so one of the programs I’m involved with is changing Risks to Reasons (From Risk to Reasons)where we’re actually helping Black women to reframe what risk is in terms of reasons. When we think about risk for HIV, we really are putting the responsibility, the power in someone else’s hands. Sex for me as a Black woman is risky because my partner may have HIV versus when we reframe our thinking, when we collectively reframe as Black women and think, well, “You know what? My reason for protecting myself against HIV is because I don’t want to have to take this medicine for the rest of my life, or I have children, or I want to be healthier, I want to take, my reason for taking PrEP is because I don’t want HIV.”  “My reason, if I do have HIV, to get into care is because I want to be able to take better care of myself.”  So part of that is speaking to Black women the way that we understand. Risk implies danger. Reasons imply empowerment, and for Black women, we get it all done all the time. We can speak from an empowerment standpoint and are stronger and better and can make healthier decisions when we speak from an empowerment standpoint when we speak from the standpoint of a victim.

Alexandra: Thank you. And Keosha, turning to you. What do you believe needs to change in the broader public health system to help Black, cisgender, and transgender women who are living with HIV achieve the goal of sustained viral suppression?

Keosha: Well, thank you again for inviting me. My name is Keosha Bond, and my pronouns are she and her. And I think that’s a really great question, because it is something that constantly comes up, and especially in our research setting and in our health settings. We had so long spent so much time focused on the individual in the sense of thinking that it’s the individual issue, that’s the problem, that’s why people are vulnerable to HIV. instead of looking at the environments that people are living in and the policies that are influencing those environments. So, I honestly think it starts from multiple levels. We do need a lot of policy changes, that is on the larger societal level, as well as in our health care facilities and how they are engaging in care, centering the patients, which we don’t do in all honesty in our health care settings. And we have, honestly, have separated how we look at sexual health from overall primary care. And that in itself has created a barrier to women of all experiences engaging in health care because we are not training our providers to provide gender-affirmative care. We’re not training them in cultural humility and competency, and that creates barriers for people when they are in, and encourages, I feel like it increases the medical mistrust because why would you want to engage in a system that constantly disrespects you and doesn’t see you as a full person? So when I think about what needs to change, it’s on so many different levels, but really what we’re looking at are the policies and how we are giving people access to health care, as well as how we are engaging people in this health care and not assuming that it is the individual who needs to change, but the system that they are living in that needs to change.

Alexandra: I’m wondering, can you think of off the top of your head any examples of that type of patient-centered care that’s an example of what we need to see more of?

Keosha: I think even how we approach one of the lectures I usually give our medical students is about how to engage in, do sexual health assessments in primary care and prioritizing different things being so that people are aware of  your vulnerability, but really they are aware of the different factors that influence your overall sexual health. So it’s not just about if you’re having sex, but who you having sex with, what type of sex you’re having, are you engaging in, what kind of practices you’re engaging in, what are your plans? And so these are things that are inclusive of it.  And so, I think combining frameworks like gender affirmative framework as well as the reproductive or social justice framework really will kind of center that if you’re speaking to the person and asking in them in general, like what,  who, how would you like to engage in care,basically, what are your options? We have so many missed opportunities, especially when it comes to women and PrEP engagement. Women are coming in and they are may be presenting with an STI and no one’s talking to them beyond that, they’re treating the STI, but they’re not talking to them about other options of what they can do, like maybe PrEP is an option for them, maybe PEP is an option, and giving them those choices, and giving them the right accurate information of what that may entail. 

One of the challenges that I think we had is that a lot of women did not understand or know that this was something that they could take, because no one spoke to them. Like the messaging in our communities was missing them, basically.  And it wasn’t until after it had been established that’s when it it’s an afterthought, but after a while, if you think about how we talk about health information or we talk about any kind of products, if you are directing to one population, then that’s who people are going to associate it with. And they’re not going to really associate it with everyone who could be sexually active, who are sexually active, because it basically who is for, you know, but that’s how we have the tendency to frame things, and I think that’s been a detriment to looking at HIV prevention because we’re not focused on sexual wellness, and that’s the whole person. And if you look at the WHO (World Health Organization) definition of sexual health, that includes physical, emotional, and mental.  And so we have to stop compartmentalizing sexual health in that way, really,and looking at the whole person, they’re all their experiences,and really focusing and centering it around the person and not thinking that everybody has the same one-size-fits-all remedies to being sexually healthy.

Alexandra: Tori and Latesha, would you like to comment on the topic of changes in the public health system or clinical approaches that you believe are necessary? 

Latesha: You know, it’s something that I’ve struggled with in regards to the fact that I am an infectious diseases provider. And I think throughout my career in regards to PrEP, I’ve been trying to really move PrEP outside of infectious diseases offices. I think that you have to meet patients where they’re presenting and you have to meet populations where they are. So that’s key to number one.  So if you have someone coming in for routine sexual health care, you have someone coming into their family doctor, if you have someone coming into their pediatrician, because really you should be talking about sexual health in adolescence, then technically, at that point in time, you should be teaching things like autonomy, what it means to have a healthy sexual relationship because I think that if you have a healthy sexual relationship, a lot of times that’s a reflection of your relationships and other forms throughout the rest of your life. And PrEP is a part of that. So any time you start engaging in sexual activities, you should be educating people about PrEP as a part of that toolkit. So these conversations actually should be happening regardless of your gender identity, regardless of your race or ethnicity and your background. The minute that you reach sexual maturity, you start engaging in sexual practices, and you should be educated about PrEP. That would be the beauty of holistic health care, I think.

Tori: I would also love to hear women talk about pleasure in a way that isn’t fetishizing but is intended to educate. For many of us, so I don’t know a single Black woman who got, Black transvestites, who got HIV from anybody other than a man. Every Black woman I know that has HIV, she contracted it from a man.  I happen to love men. I’m very man-centric. I have sex with men. So, yay for men. But we know that. And so immediately, that should, for many of us, say that Black men and trans women, are walking the same streets, sleeping in the same beds, etc., etc. And so there should be some unity there. But in addition to that, I think when we talk about sex as pleasure, then suddenly again, it takes away the victimization, but it also adds an empowerment aspect that I talked about once again. And, if your goal is pleasure, we know that from public health, we talk about substance abuse people and how hormones, pleasure-seeking hormones can trigger addiction. If you talk about pleasure, then you’re going to do what’s necessary to receive pleasure, to achieve pleasure. And if pleasure means having conversations, to get to a pleasurable point means having conversations around PrEP and PEP and what that means and healthier sex and being healthy sexuals, rather than concentrating on being heterosexuals. Then suddenly, it evens the playing field a little bit more for women. It gives us the power to make better decisions for ourselves, which is not something that we’ve always had the privilege of doing.

Alexandra: What are your thoughts, do you have thoughts, anyone, about additional things that health centers could be thinking about as they’re trying to make sure that the Black, cisgender, and  transgender women in their communities have equal access to PrEP, to HIV treatment and prevention?

Tori: So as Black women, we learn very, very early on the power of code-switching. You talk one way at work and then you talk another way when you’re talking to your family and your friends, and your mom and your kids. And so, there’s power in code-switching when used effectively. And I think that Black women can talk to Black women in a way that other people can’t. And so making sure that we that health departments are hiring people who are part of the communities that they serve is a great way to get messages to people in a way that they understand it because there’s no point in giving great information if folks don’t understand it, because then they can’t use it.

Alexandra: That’s a great point. And for those who don’t know, that is a real value of community health centers, to try to make sure that their staff, their leadership, and the boards reflect the communities they serve. But there’s always room for improvement.

Tori: Yeah. It doesn’t take a master’s degree to give an HIV test.

Keosha: No, it doesn’t. And I totally agree with you, Tori, especially in the sense of like, we constantly have spaces that we do not feel welcome, but we are expected to show up and participate in these spaces, especially Black women, when it comes to our sexual health, we have to acknowledge the fact that a lot of our sexuality has been stigmatized in this society, in this country, and part of that is having representation across the board, like Tori mentioned, like having people there at the table, but also framing it in a way that you are acknowledging the fact that women, Black women are dealing with these factors in their lives, like let’s not ignore the fact that they are experiencing gender and racism. And then what I approach them, and not understanding that, yes, I may be apprehensive about adopting or wanting to listen to PrEP because those things are there, you know, those things are part of our existence, they live with us, and so when you forget, when you don’t center it around who the person is, and I think that is in itself problematic, in trying, to even in the health material that you’re creating, you know, if you’re going to sit there and constantly tell me everything I’m doing wrong in my life, of course, I’m not going to be open to listening to anything that’s related to my sexual health that may help improve it. You need to be focused on the things that I’m doing right, you know, and in the strength of who I am as a person, as a Black woman, and focus on what’s positive and uplift us and provide us with that empowerment and having people there who we don’t feel that we have to explain who we are to, and explain those experiences, because I know that’s a big barrier again for Black people engaging in any type of health care, whether it’s mental health or sexual health, it’s just that having that burden is,  like Tori mentioned, code-switching when you are at your most vulnerable because you need assistance with something, you need answers. So I just think it’s really important to really center, understand the community that you’re serving and have people there who understand the community. 

Latesha: I don’t have a lot to add. It’s been difficult. I agree completely with the idea and the beauty of having representation at all levels, especially in leadership. And I just want to again repeat that until we have policy changes in regards to the resources available, especially in states that are non-Medicaid expanded, there is going to be a ceiling to how far that reach can go. Things like universal health care and being able to actually afford to pay for PrEP and to be able to have mirrored services that we have for people living with HIV that we also have for people receiving PrEP, you actually have comprehensive and holistic health care so you can get mental health services, you can get housing, you can get anything else that you may need, that is a barrier to you having optimal health outcomes would be, I think, the most perfect world that we could live in from a public health standpoint.

Alexandra: And Latesha, will you just explain for people who aren’t familiar with the difference that Medicaid expansion makes, what you mean by that, what kind of opportunities and resources that creates?

Latesha: Yeah. So, I can, so I am, there are 11 states right now that have not expanded Medicaid, and Alabama is one of those states. So, in regards to that, that just means that it makes it that much harder in regards to how far you have to live below the federal poverty level for you to be able to get access to health care, for you to get access to Medicaid, and for you to be able to get, really, just general preventive primary care services. So we have several people who do not have health care at this point in time who cannot get services like PrEP and PEP and primary care services because they are not so impoverished that they can qualify for Medicaid within our state. 

Keosha: Yeah. And I kind of want to add to this because we just did a recent policy analysis and we looked at the states that had the highest rates of HIV infection among cisgender women, and half of those states did not have Medicaid expansion, so they’re probably the ones that you’re mentioning. And so that in itself is a reflection of what we’re, of the challenges that we’re dealing with, is that that the access to care is not, the needs of the people are not being met, basically. And at the policy level, and this kind of thing createing more barriers to people engaging in care, and that plays a factor in how they engage with emergency contraception as well as PEP and PrEP and just having knowledge of where to go. 

Alexandra: Absolutely. I mean, these are policy issues,and as Daniel Dawes has put them, they are political determinants of health,right? and they,.there’s a direct connection, so it’s okay to talk about that.

HIV/AIDS prevention and treatment care with Black CIS, and Trans women needs to:

* Use messaging that emphasizes healthy sex rather than risk behaviors

* Make access to healthcare more equitable by addressing systemic barriers

* Center the plan of care on a person’s strengths as well as their needs