The following is a lightly edited transcript of Episode 14 of The Future of HIV Care, a monthly podcast from TheBodyPro about the issues and initiatives that are changing the way we approach HIV prevention, treatment, patient care, and services in the U.S. You can listen to this episode using the player below, by following The Future of HIV Care on Spotify, or by searching for it and subscribing within your podcast app of choice.
Juan Michael Porter II: It’s Black History Month, the shortest month of the year. And just like last year, we’re looking at structural racism, this time with a focus on solutions.
It’s not enough to talk about an issue or to acknowledge that the house is on fire. At a certain point, one has to look at those issues and formulate a game plan for addressing them effectively beyond the data and studies.
Similar to our discussion last year, rather than simply call in a Black person to speak about medical racism—which they suffer from and did not create—I reached out to an incredible Black woman who is living with HIV to speak about her experience and connect us to a way forward. I also reached out to a wonderful white man who is researching and developing practical applications around HIV within clinical settings to help listeners transform their practices.
I am excited to have Susan Cole-Haley as our first guest today. Many of you within HIV know who Susan is: She is a voice of HIV around the world who speaks to any and everybody—and leads us, and educates us, in a way that we know how to overcome these issues, recognize them, and think about: What would the world be like if it wasn’t this way?
As part of this Black History Month conversation, I said: I’m not going to ask Susan to talk to me about how to solve racism. I’m going to say: What do we say to other medical professionals who are thinking about actively becoming a conspirator instead of an ally, and decolonizing the medical space so that we who are so overrepresented within HIV [diagnoses in the U.S.] can attain optimal health outcomes.
Thank you for being here today, Susan.
Susan Cole-Haley: Well, thank you so much for that very kind introduction. And also thank you so much for everything that you are doing in terms of HIV information and addressing issues around racial inequality. I feel very privileged to have the opportunity to be speaking with you.
Porter II: Our viewers can’t see us, but I’m smiling so much.
We’ve spoken about this before, but you were actually diagnosed with HIV in Louisiana, I believe?
Cole-Haley: Yes, that’s right. I’d just gotten married to my second ex-husband—I’ve had three ex-husbands so far; always on the lookout for Ex-Husband No. 4 if you know anyone—and part of the immigration test is having an HIV test. It didn’t cross my mind for a moment it would come back as positive.
I was in rural Louisiana—so, very different to London. And the doctor said to me, “Well, the good news is you don’t have syphilis. But the bad news is you’re HIV positive.” And that’s how I got my diagnosis.
Porter II: I don’t even know where to begin with that. How did you process that?
Cole-Haley: It was absolutely devastating for me, because I knew very little about HIV at the time. It didn’t cross my mind for a moment that the test would come back as positive.
My children were only 5 and 7 at the time. I actually asked the doctor, “Well, how long do you I think I’ve got to live?”
And even though this was January ‘99, when there was effective treatment, he said to me, “Oh, about seven years or so.” So you can imagine how devastating that was.
Porter II: Do you find that there tends to be less-effective communication with people who are Black in medical spaces? Or do you think that they have actually improved where we are today?
Cole-Haley: I think things probably have gotten better than they were. But I think we would be fooling ourselves if people believed that it’s all fixed. And I think COVID may have shone a light on health inequalities.
We people of color know that it’s been affecting us for generations across all disease areas. And I think it’s been shocking in terms of HIV—particularly for Black women, who face intersecting forms of stigma, discrimination, and disadvantage.
There’s so much more than just having an undetectable viral load or a high CD4 count. We need to consider these other issues. And we need to consider the impact of racism that we experience and the impact that that has on our health. I mean, fortunately, in the U.K. there are some brilliant doctors who are working to address that, but working really closely with the community. Because I think it’s so important that we aren’t used, you know, in the sense of, like, as case studies, or in terms of lip service. But we’re meaningfully engaged. And actually, not just engaged, but leading the charge in terms of projects that affect us. Because ultimately, we know best.
Porter II: This makes me think about something Gina Brown, who was formerly at Southern AIDS Coalition, told me, where a doctor gave her information that was outdated. And when she informed him of the most recent statistics, he argued with her. And she said, “Well, aren’t I a woman who lives in my body? Wouldn’t I know best about what works best for me? And if I’m presenting you with the actual data and you are still arguing with me, then how do we have any sort of relationship where you can help me?”
I’m wondering: What is it that you think is different from those who are effective and those who are sort of, I guess, head-in-the-clouds, thinking we’re all on the same level playing field?
Cole-Haley: Well, I think Gina is marvelous, and so knowledgeable. And it’s the fact that people like Gina, who really knows her stuff, still faces that.
But I do think that knowledge is the most empowering thing that we have, and the most important tool that we can use in addressing the discrimination that we face. But we have to be honest. When people face this day in, day out, across disease areas—I think so many of the women that I speak with say, “Well, you know, I’m having these problems. I’ve mentioned it to my doctor. But they just don’t believe me. Or when I say again, they just don’t take it seriously. So what’s the point? Why bother? Because I’m just not going to get anywhere.” It’s a huge problem.
But at the same level, I mean, I’m quite conscious of my privilege, in terms of that I was born in the U.K., and I have economic stability. But certainly, Black women from migrant communities face even worse hostility. And immigration issues! The hostility to people who are asylum seekers is absolutely appalling.
Porter II: That’s such an important issue. This is a global, I’m going to call it, a pandemic. It’s a global pandemic. And we all know that we don’t get through this by treating only one person; we must treat everybody.
With that in mind, looking into being a conspirator, you named the fact that we face so many different health conditions. And I’m going to say a number of them for those who are unaware. Within the States, many Black people live within pharmacy deserts, vaccine deserts, medical deserts, and trauma care center deserts. That last point being very important because a number of Black people lack health insurance and show up to trauma care centers for basic care, including HIV care, because that is their only option.
And I wonder if you have ever spoken to someone who is in these sort of positions or working in these centers, and making them aware of the fact that, you know, it’s not just the broken arm. It’s not just the illness that you can see. It’s not just the illness that’s showing up on the chart. There are usually other issues that need to be addressed.
Cole-Haley: That’s a very important point that you raise. And we are quite fortunate in the U.K. in relation to HIV care. So, regardless of your immigration status, HIV care is free to everyone. But I’m really conscious, particularly for people from migrant communities, who may not have the eligibility to get treatment for other conditions. That can be really, really traumatic.
And often people say to me, “Well, you know, in terms of HIV, it’s fine. I’ve got an undetectable viral load. But I’ve got all of these other health conditions that aren’t being treated effectively.” And people with HIV, we’re more likely to experience stigma and discrimination in health care settings than anywhere else, which can be really, really problematic and stop people from getting the care and treatment that they deserve.
Porter II: That point there makes me think of something I heard in Puerto Rico from Pat Knowles. She made a point that—how can you ask me if I’m taking my meds or why aren’t my numbers going down when I can’t eat? When I can’t feed my kids? When I don’t have a place to live?
And looking at the history of deprivation—let’s just call it for what it is—or negligence, or financial disempowerment and disinvestment in Black communities, that becomes such an important issue, I wonder where we come into this conversation and say to doctors that it isn’t just about treating the illness. It’s about treating the actual systems that make it almost impossible for some people to escape.
Cole-Haley: Absolutely. And there’s so many similarities to what’s happening in the U.S., to what’s happening to people from Black and migrant communities in the U.K. And I agree health care professionals can play an important role. I know that they perhaps are a little bit limited because they can’t give people a roof over their head, or they can’t give them money to eat. But they can play an important role in signposting people to where they can get help and support.
And being in a position where they are a trusted source of information—because, essentially, HIV consultants need to recognize that they can’t just talk about HIV if they want their patients to be well, because there’s so much more that impacts on our health than just having an undetectable viral load and a high CD4 count.
Porter II: This makes me think about a basic question I asked one of my students, his family, his parents. “How are you doing?” And they were so shocked to hear me ask that very basic question, “How are you doing?”
And I think as Black people that’s not necessarily given the full weight. There’s the sort of expectation that we’ll say, “Fine,” and move on with it.
But what if a doctor actually said, “Now, how are you doing? I know that these issues are so pervasive within our country, within our system. How are you doing? You just came in for blood work. Did you eat? You just came in for blood work. Do you have to run to work five different jobs before you pick up your kid? You just came in for blood work. How many buses and trains did you have to get here?”
Because there is a tax that goes with dealing with the basic care of maintaining one’s health. But there’s also a tax that comes from being Black, especially when you’re living with this virus. And I think to that point, maybe we can’t get people a roof over their heads. I know that I can’t. But I can connect people to resources. And I think that when one is working within an actual hospital or clinic, there in the back of their minds has to be a place of, like, “Oh, hmm. You’re a little shaky right now. Can we get a separate room for you so you can sit and recover, so you don’t have to run right away? Or can we connect you this? Or what is your housing situation like? Because maybe there’s someone here who can help improve.”
Cole-Haley: Yes. Absolutely. I think that that’s so important. And often peer support can be really helpful. And some of the most effective clinics in the U.K. are the ones where they have a peer worker working within the clinic, as well, who can talk to the person living with HIV and help point them in the right direction. Because very often, people can be a little bit reluctant to tell everything to their doctor. It needs to be someone that they trust.
I run community engagement interactive workshops for people of color living with HIV. And very often the things that people are telling me, they say, “Well, I can’t tell my doctor that because my doctor might be angry,” and things like that. So it’s really people need to trust the person. And trust is really important in terms of communication.
Porter II: I think that acknowledging that there is a deficit of trust, particularly—and with good cause, let’s call it—in Black communities within the States. We talk about medical hesitancy and medical mistrust. And I always say, well, there’s medical distrust. Because mistrust is based upon false information, whereas distrust is, “I have a reason not to trust you.”
I’m not saying that all doctors are doing bad things. Absolutely not. I think that everyone came into this field to heal and to help. And it is much more complicated than what we saw on ER, where we’re playing the good guys. Because the systems are built to actually hurt so many people, specifically Black people, and Black women.
Within what you just said there, I’m thinking about actually reaching out and developing a relationship that does go beyond the fact of, like, “I’m a caregiver. You’re a patient.” No. “You’re a Black person. And there are some things I’m probably not going to understand because only 5% of physicians in the United States are Black. So, what do I need to understand so that I can earn your trust?”
Cole-Haley: Yeah. Absolutely.
And I think, as well, it’s like having the time for those conversations beyond the medical. So, in terms of, like, “Oh.” Because the patients often, just as they were about to leave, would say something like, “Ooh. Ooh. And another thing …”
And I feel that I’m pretty much alive today because I have HIV and I had that conversation with my HIV consultant when I had breast cancer. And I had, like many Black women, my breast cancer was diagnosed late. I was initially told it was just a cyst. And six months after that, I had my HIV consultation. And before I was about to leave my doctor said, “So, I’m just checking. Is everything okay, you know, in terms of your breast exam?”
And I said, “Yeah, yeah. It’s all fine. It’s just a cyst. But I’ve developed a rash around where I had my biopsy. But I’m sure it’s nothing.”
She’s like, “No. You’ve got to go back.”
I was like, “Oh, I don’t want to waste their time.” Because they were so dismissive. But when I did go back, finally, they found that I had triple-negative breast cancer, which is the most aggressive type that mostly affects Black women. And at that stage it was five centimeters all around. So it was huge. And I had to have chemotherapy because it was left so late.
So I’m really grateful that I have HIV because otherwise I wouldn’t have had that additional conversation to get it picked up.
Porter II: You really just named something. I’m a little taken aback by it. Because I’ve had friends who were dancers who, because they were young and, you know, all of these things; they had severe breast cancer, and it was caught so late. And it happens time and time again where it’s dismissed. It’s not taken seriously. And I hope that those who are listening consider that, again, we’re saying time and time again that it is not about treating simply HIV. It is about the full continuum of care. And that is something that we as Black people are frequently shoved out of, left out of, not allowed to participate in.
And because of the stigma around this virus, I think it’s very easy for us to be dismissed, or to even be blamed for our conditions. But actually, if you’re going to be a conspirator and not simply an ally, it’s best to lean in and to think about treating everything. And I would say even being overly cautious and going, “Well, we know that having this chronic illness, regardless of one’s ART, does have debilitating effects over time. And you are more prone to these conditions. Let’s keep our eye on them. Because you’re fine right now, but something may present. And we don’t want it to be late stage.”
Cole-Haley: Absolutely. Yeah. Very important point. And I agree.
Porter II: I feel a little bit like I’m mansplaining at times. Like, you say something and I’m like, “Let me interpret it.” But—
Cole-Haley: No. Yeah. No. I ever much agree with what you’re saying. And it’s really interesting having this conversation from across the Atlantic and seeing those parallels in the U.K. and in the U.S.A. And, yeah, we have to recognize that inequalities aren’t just between countries. It’s also within them. And we’re not going to be able to end HIV transmission. And we’re not going to have people, you know, like, living full, fulfilling, happy lives until we address the health inequalities and the racism that’s fueling HIV in the U.K.
Porter II: And the U.S.
Cole-Haley: Yes.
Porter II: The world.
Cole-Haley: Around the world. So you’ve got to get that sorted out.
Porter II: I think, to that point, you named something—the time—earlier. And I know frequently, one will say, “But who has the time to do all of these things?” And I always say, “You don’t not have the time.” Because you actually end up saving the life. And you save so much more time down the line when you take the extra minute or five minutes to actually address the issue in front of you.
Because imagine if your doctor hadn’t listened to you, or just let you go and not checked in. I shudder to think that you wouldn’t be here.
Cole-Haley: And how do you get your best care?
Porter II: I am hypervigilant. Because my mum was a doctor. And she equipped me to speak up in front of medical professionals. And I know how to speak. I know how to present. All of these things. And I won’t call it code switching, but I will definitely—I’ve been asked if I was a medical professional on more than one occasion because of that influence. And I would say that it has saved my life.
And I would also say that it angers me. Because there are people in Wisconsin who do not have that same sort of force field around them that protects them from being dismissed. There are people who don’t know how to advocate for themselves. And because I’m hypervigilant and very go-go-go about it and “we’re going to figure this out,” and am quick to pull out an article or a study to prove my point, it means that I tend to have a better time of it.
But there are definitely struggles, especially for someone, when I say, in my position as the senior editor of TheBody.com I should not lose access to care. And yet, it has happened.
Cole-Haley: That is shocking. And you make a really important point in terms of pulling out studies. Because I think that knowledge is the most empowering thing that we can have.
And it can be difficult to have these conversations about racism. But when we back it up with the data and the studies, it shows it to be the reality. So it’s not just, they can’t dismiss us and say, oh, we’ve just got a chip on our shoulder, or I’m an angry Black woman, and all of that nonsense that they usually say.
Because, you know, we are tired of hearing the same things year in, year out. We need to move beyond identifying it to actually fixing it.
Porter II: What if, instead of physician skepticism towards patients, we had physician automatic acceptance? And going, “Well, I don’t know if that’s what this is, but let’s assume that it is. And let’s pursue the possibility. Since you were so accustomed to having people not believe you for whatever reason (usually racism), let’s automatically assume that what you think is a problem is a problem, and eliminate all other factors. Or if we find out that it really is that problem, do everything we can to keep you alive.”
What if people believed us instead of dismissing us? I think that would actually get rid of the racism because the racism is the skepticism.
Cole-Haley: Absolutely. It’s very much just not believing us, not taking us seriously, dismissing our pain. So, yeah. It would be really helpful if the default position was belief rather than disbelief, which is something that, as people of color, we regularly face. So that would be really helpful in terms of what you’re suggesting, beyond just being an ally.
Porter II: For those of you who want to conspire with us in taking down the awful inequities within HIV care, and I would just say the full continuum of care, start off by believing us.
I’m going to do something odd for this podcast and plug another podcast that Susan is the co-host of. Would you tell us a little bit about this new podcast, Susan?
Cole-Haley: Yes. It’s actually, it’s a live broadcast series that I’m co-hosting with an incredible doctor, Vanessa Apea, who is a sexual health doctor in London. And it’s all about health inequalities, and not just calling them out, but solutions to fixing them. And all of our guests are people of color who are very much experts in their own right. And we’re working together to discuss it and to come together to finally break the scourge of racism in health that’s been affecting us for generations.
So, do please check it out. You can catch up on the last episode on the aidsmap website. And it’s available on Facebook and Twitter, as well.
Porter II: And I name that because this is not something that is solved in one podcast, in one go, in one listen. It’s an ongoing thing. And knowing that you are continuing this fight in ways that I can’t even imagine. Anyone who wants to learn more and do better, listen to Susan and her guests. They are the real deal.
Thank you so much for being my guest today.
Cole-Haley: It’s been an absolute joy, as always. Thank you for inviting me to join you.
Porter II: A key takeaway from this discussion with Susan is that Black people within the U.S. and the U.K. face incredible barriers to HIV care, to the point that it often feels as if we were purposely shut out, and that doctors with an awareness of this reality can intercede to help make a difference. And that when administering care, we should all listen to our patients and work from the starting point that, if we believe what you were telling us first, things will probably go very well.
Think about this. In a society that has been developed around discounting and dismissing the words of Black people for centuries, you can literally save a life and make all the difference if you come from the starting point that “I believe you. I take you seriously. And together we are going to get to the bottom of this.”
For our next segment, we are speaking to Dr. John Schneider, M.D., M.P.H., professor of medicine and epidemiology. He is a network epidemiologist and infectious disease specialist in the Department of Medicine and Public Health Sciences at the University of Chicago. He is also director of the University of Chicago Center for HIV Elimination. Clinically, he specializes in HIV prevention, with a specific interest in young Black men who have sex with men, and transgender women. He also has extensive experience with advancing the physician-to-patient relationship in resource-restricted settings.
Thank you for being here with us today, Dr. Schneider. How are you doing?
John A. Schneider, M.D., M.P.H.: I’m great. Thanks.
Porter II: I was very excited to have you on this call. Because so much of the discussion around medical racism and barriers to care within Black communities is, well, why can’t they get it together?
One of the things that I noticed in your research is that there isn’t this assumption that Black communities are doing anything wrong; there’s an acknowledgment that one may be living in a resource-restricted setting, or that one might face all sorts of stigma, stereotypes, and hostile behavior. And I’m wondering if you could tell us how this came to be a sort of concentration for you.
Schneider: Yeah. I’ve been working on the South Side of Chicago since 2001, and so that’s just over 20 years. And I’m a white cis man. Working in an environment that’s different from my background and experience required me to kind of adjust, observe, and then implement different sorts of practice than what typically is happening in sort of white or privileged settings, like the hospital at the University of Chicago.
I remember being in the Emergency Department as an intern, seeing patients, seeing young Black gay men coming in with syphilis or HIV, and it just not being the right environment for them. You know, the University of Chicago, while we now have made a lot of improvements, back then was still probably more homophobic, transphobic, didn’t want a lot of substance users coming through. And so there really wasn’t a robust sort of HIV program, which is something we developed. So, to deal with that we recognized that we needed to go outside of our walls and engage community, not in the hospital, not in our clinics where we’re always kind of having people come to us, but to actually go out into the community.
And so, my first project engaging the community around HIV testing was partnering with a community-based organization just a couple miles from the medical center. And so that was kind of the beginning. And it’s just kind of expanded and developed more, to the point where now we have a full-on community service research space off campus. Because the other thing we noticed—or I noticed, as a researcher—was that we’re asking our participants to come into the campus and medical center. You know, the campus is a place that Black people have been excluded historically, right? So you’re basically asking people to come to a place where they’ve been excluded, to a hospital where Grandma may have died because she’s coming there too late because she couldn’t get all the care that she needed before she was sick. And then she died there.
And then we have security at the front, right? So in top of all of that, then you have to navigate security, maybe looked at a different way than someone who’s white coming in through the front door. And so we’re just, like, we just don’t want to do any of this.
And we tried for a while. We had someone go outside and meet people and kind of shepherd them through the process. But it was just not—you know, we were kind of doing acrobatics, when it should just be pretty easy.
So we set the space up in a building that historically has had a lot of sexual- and gender-minority-serving organizations. So the community knew this is where, this is a safe space for being intersectionally Black and, you know, whether it be gay or trans. And so, when you walk in the front door, you could be coming to us. You could be going to get a haircut. You could be getting your physical therapy. You could be doing Kumon. There’s all these different suites in the building. So there was not stigma, and it was welcoming. And so, that was kind of my approach to really trying to get past some of these pretty significant barriers for engaging community.
Porter II: You’ve essentially created the safe space. You recognized the need. And instead of saying, “Well, if you’re not coming to us, you’re the problem,” going, “Well, maybe we’re the problem. Maybe historically there has been this problem. And let’s get rid of that and go onto their turf.”
I know that I have a lot of privilege. And so I walk into spaces and I’m very comfortable. Like, I’m a jerk about it. But that’s not the experience for many people. Some of my friends had said, “Oh, I don’t want to go to your clinic because I think people look at me funny.”
And I thought, “Wow. That never occurred to me.” But if a look is enough to deter you from care, then something needs to change. Because I think that what you’re telling us is that when you remove barriers, every barrier possible, uptake, of care, improvement of all these conditions go up, are improved dramatically.
Is that something that you’ve spoken about with colleagues?
Schneider: Yeah. You know, I mean, the saying is, you know, meet people where they’re at. That fits basically any condition, identity, you know. So that’s important. Yeah.
And so, there’s a group of us at University of Chicago who believe in that and believe in that type of engagement. I’ve gotten a little bit of a white beard now. So I’m starting to bring on people who are junior. And the people who we’re bringing on—we hired the first person of color in this section of infectious diseases who I helped bring on. We hired the first person who self-identified as gay. We hired the first Black person. So we’re starting to bring in diverse people to help this process. And that hasn’t been done to date.
So when you say, “Have you talked to colleagues about it?” Yes, I’ve talked to them. But I’ve also recruited people who really kind of are down with the program and really want to make change.
I don’t think you have to have a certain—we shouldn’t also assume that just because a provider is Black that they’re going to do well with Black gay patients. But I think it helps. And the physician-patient relationship trumps everything. And so if that can be generated and instilled and maintained, the patients will trust you with anything, really.
I was a former clinic. In this building I was telling you about there’s a Howard Brown Health Clinic, which is, I started here because we didn’t have competent LGBT HIV care on the South Side of Chicago. I don’t know how much you know about Chicago. The South Side of Chicago is like the largest Black, kind of, segregated community in the U.S., actually, the largest population. And so it was pretty remarkable, even back to my ER days, knowing that we didn’t really have HIV systems of care on the South Side. They were being asked to go to the public hospital that was further away. It wasn’t in the community. It was an isolated building. If you were even in a few blocks of that building, people were like, “Oh, that person has HIV,” right? So that was problematic.
So, setting up this clinic here was very useful to the engagement, as well. Because we’re doing other projects. And if someone had a clinical need, I can just walk them down the hall to the clinic. And they can be seen by someone who’s going to use their pronouns if they’re trans.
I brought that up because I was talking about the physician-patient relationship. Before the Howard Brown clinic that we started here I was at another clinic. I won’t mention where that was. But I had about 300 young Black sexual- and gender-minority patients there. And when I left that clinic because there were some issues there and started the Howard Brown one, they all came, right?
So that’s the thing about the physician-patient relationship and the importance of it, is in this crazy medical system that we have now, where some patients will see a different provider every couple months, there’s all this turnover, and you know, it’s kind of this yucky business model that’s happening right now, if you have a good provider and they stick with you, that’s where real progress in health can be made. And so, that’s been something that I’ve really worked towards, to gain trust of people.
And maybe I’ve had to work a little harder, given my privilege and how I look. But I now have a reputation on the South Side, and so people—everything is word of mouth. And, you know, we can put up a billboard and say University of Chicago. But that doesn’t bring people in. But if your cousin says, “Yeah, that provider, they’re good, or they’re respectful. You can trust them—” So now I’m starting to get my patients’ friends, their lovers, their cousins, sometimes their parents. It’s been really nice to be part of that.
Porter II: Go see Dr. Schneider. He’ll take care of you.
That is a big point about trust and the physician-to-patient relationship. And I think it’s sort of taken for granted that, well, I have a white lab coat, or I have a white doctor’s coat. Of course, they’re going to respect me.
And I think that respect can also have fear. And what it sounds like you have created and engendered is warmth, and this feeling of mutual trust, so that if someone presents to you and is like, “You know, I don’t want to be seen here because I don’t want people in my business. I don’t want them to know I have HIV.”
Instead of you dismissing them and saying, “Well, why should that matter?” it feels as if you would take them at their word and respect the need for that privacy.
Schneider: Yeah. Yeah. For sure. I think what’s helpful too is, the art of healing is really doing a lot of listening. I mean, right now I’m talking a lot. But this is more than I usually talk. When I’m in the room, I’m doing a lot of listening and a lot of, kind of, trying to understand what people are saying and where they’re coming from. And particularly, I find that probably more than half of my encounter is talking about the social issues, right? It’s not like doing a very biomedical interview. I mean, certainly, if there’s an issue, we go that route.
But a lot of it is, I want to know where they work. I want to know where they live, who lives with them, what are some of the people they’re connected to, and what their goals are. That’s helpful for me to then situate. “Okay, I’m going to make this recommendation. But I may make a different recommendation based on all the information you just gave me about your social situation,” right? Something that may be more conducive to that or amenable to being unstably housed, for example. That’s another important part.
I also have the luxury of, I work with young people. And so, it’s actually kind of fun. Because we’re able to talk about fun stuff and I’m able to learn what’s going on with young people.
Porter II: What’s interesting to me about you as a researcher and an active physician is that so much of your work seems to be informed by the social reality of who you’re working with. One study I was reading that comes to mind is about Black transgender people engaging with care, Black transgender women, specifically, and the understanding of, it seemed to be pretty clear to you going in that there’s something that they’re facing that’s preventing them from accessing PrEP.
And instead of thinking, “Well, why is that? What’s wrong with them?” really listening and paying attention and then finding that they’re facing discrimination sometimes. They are not comfortable.
So often when I interview different researchers, they don’t want to draw conclusions from the work. They want the data to speak for itself. But we’re speaking about living people, and not just data and figures. I wonder if you could say a word about taking things beyond the study into the community, instead of just like, “Well, this is what the study says. What else do you want?”
Schneider: Yeah. I think that study, in particular; it’s important to have varied methods, right? So, we can do like a quantitative survey and get people’s responses from a select, you know, sort of select options—which is helpful; it gives us kind of a general, big picture. But that study was in-depth, qualitative interviews and really trying to understand what motivates people.
And I think, again, this whole idea of decreasing barriers and motivating and meeting people where they’re at, I don’t have to do research to figure out. I know that if I have a Black trans feminine person that I’m seeing who’s vulnerable to HIV, I’m not going to say, “Okay, I’m going to give you this pill to prevent HIV. But, you know, you have to make another appointment with this other doctor to take care of your hormone therapy,” right? So I had to learn.
I didn’t train. You know, I didn’t have endocrinology training or specialized training during my degree, how to take care of transgender people. I read. I went to some courses. And it’s actually regular, primary care. And so the stigma that people have towards trans people—I think for providers it’s a big barrier. And a lot of them won’t provide hormone therapy, when it’s actually; it’s easier than doing diabetes care. Right? Much easier. And less complicated.
So, if I’m going to engage someone around PrEP, I want to make sure that all their other issues are addressed. Because PrEP is kind of coming from me. Sure, sometimes someone will come in and say, “Hey, I want PrEP.” But the majority of the time, it’s like, I’m talking to you about your social life and your transitioning and your starting to look more feminine. You may be getting into relationships more. And I want to make sure that you’re not going to get HIV.
Porter II: That’s such a huge point of, again, meeting people where they are, and also engaging—I’m living with HIV openly. And I would say that if someone was engaging me around what was interesting to me, that’s going to be my guy. That’s going to be my lady. That’s going to be the person I go to. Because I know that they actually care and are paying attention.
This gets to something I had, a conversation I had with Susan Cole-Haley of aidsmap. She spoke about her being dismissed around a lump she had on her breast, and then her HIV doctor speaking to her about it. And she was very late-stage with cancer. And, again, recognizing that when one is involved in HIV care, whether it is prevention or keeping someone in treatment, that it’s not just a single button issue. It’s the full continuum of care.
Schneider: Oh, yeah. Oh, yeah. Yeah. I think what happened —I mean, this is just kind of a historical thing—the HIV epidemic got thrust on some infectious disease doctors in the ‘80s and early ‘90s. And infectious disease doctors, they don’t do primary care. Infectious diseases, you just kind of treat the infection and then move on. You don’t follow people over time. So, you basically got the worst, kind of, group of people that could deal with this epidemic, and patients, and things like that.
I think ID providers, though, were good, in the sense that they tend to have been dealing more with people who use substances and other things. So there was that cultural part. But the primary care, kind of following people over time was just not part of their training.
And so, I think, though, now, with the younger generation, or the newer generation, they’re able to take care of all the issues, right? So, you come in with a breast lump; you come in with diabetes; you come in with whatever. We’re going to take care of that because you have to, right? You don’t want to be shepherding someone to a bunch of different providers and different clinics and things like that. So, people want one-stop shopping. Competent. Assuming there’s competency to take care of all those issues. And so, that’s the patient-centered approach. That’s the relationship building.
And so, still, we still have some providers who, they’re seeing them for their HIV and then they’ll send them over to me for gender care. And I’m kind of, like, well, you should do both, or I’ll do both. You know, that sort of thing.
Porter II: When you think about the way forward, you’ve spoken about a newer generation that is coming up and that recognizes the need for more than just, “I do one thing. I need to speak to you about the full continuum of care.”
For those who are older, for instance, people who don’t know how to prescribe PrEP because it’s not in their wheelhouse; they may not necessarily approve of it; or those who are not comfortable with different types of communities—is there anything that you might have as a word of advice for, like, “Let’s cut that out, or here’s how you get over that”?
Schneider: When PrEP was just kind of coming out, I did some trainings for providers. But you know, you can’t just have people come to a talk, you know, even a really good talk, about how to do it and how to be culturally competent about it and feel comfortable about talking about sex. So what I did is I actually went into the clinic, and I would be sitting next to them. And I would occasionally come into the room when they were in with a patient.
But you’ve got to have someone who’s willing, right? So, the willing people, when I did that, it was kind of like, do that a couple times; and then they were able to do it.
People who just can’t talk about sex? PrEP is not going to be something for them. I think everyone should be able to do it. I think it’s promising that now in medical school curricula we do have more lectures and workshops and small group discussions around sexual health, sexual wellness. And then also, when I went to medical school, we didn’t have any mention of LGBTQ, sexual- and gender-minority anything. Right?
And so, at the University of Chicago, I was the first faculty member to provide a lecture to our medical students on sexual- and gender-minority health. As a white, straight, cis male, doing that is because of my experiences working with the community. Right? And learning. And being able to communicate what I’ve learned to medical students. Now we have other people who have taken up the torch and are kind of moving that.
But I think, you know, when we talk about the newer generation, I think we are in some ways making progress in that way. Clearly, we have a lot of unbelievable political and other obstacles that are coming and keep coming. But I’ve got hope, more hope, with this group of people who are coming up.
Porter II: I love this. And what I take away from that is, it’s a willingness. And when one is willing the change does occur.
Schneider: For sure.
Porter II: And I also want to say I love that we started talking about race, and then going to where people are, into the full continuum of care, and then just getting back to a decent practice. At the end of the day, this is what any and everyone deserves. And I think that when one talks about race, that’s what’s left out of it—that no one is asking for someone to put on a crown. Like, just treat everyone where they’re coming from, decently. Whether they are a fisherman. Whether they are someone who works in sanitation. Whether they are a high-flying CEO. We all deserve care.
And I want to thank you, Dr. Schneider.
Schneider: Yeah. No, for sure. And I’ve mentioned that we’ve recruited people that look different from the majority of the faculty at the University of Chicago. But it’s also important that, you know—there’s also class differences, too, right? And other differences. And maybe people may not be the descendants of slaves but look like the descendants of slaves.
So, there’s a lot of issues. And so, I will go to most of the funerals of either patients that I’ve had that have died, or their lovers who’ve died, and I’ve gone to weddings. And that’s really important because, not only do I understand where people are and where they’re coming from, and other people I know are at these events and so they see me, and they know that I’m supporting. And so, I always encourage all of the trainees to go to community events, both outreach and general social events. But also, weddings and funerals are really important. Weddings and funerals define a lot of our lives.
Porter II: As an educator I actually moved to the community where I was teaching specifically for this reason. Because I recognized that I’m not connecting to my kids or their families. And it’s because I wasn’t present.
I think you really just highlighted a big point, that it goes beyond just describing a pill. It’s a lifestyle. And as a former dancer, I can say that, yes, it is not just taking ballet class or doing rehearsal; it’s your full life. And being a doctor, being a medical professional, is a beautiful calling that, again, goes beyond clocking in at whatever hour and clocking out. And thank you.
Schneider: Yeah. Yeah. No, for sure. I feel very lucky to have this privilege to be able to be part of people’s lives. It’s really—you know, I think it’s helped people. But it’s definitely helped me, as well, as a person and a human.
Porter II: As our conversation with Dr. Schneider shows, you can actually make all the difference in the world when you show up and are present and acknowledge that you are coming from a different place from your patients. For Black people, that means acknowledging the fact that medical racism exists and has existed for a very long time, and that we can actually go beyond the barriers to make sure that everyone is accessing the optimal care that they deserve. As Dr. Schneider said repeatedly, that means people where they are, even if you have to step out of your clinical practice and go into the community.
And as a final reflection from Susan, I want us all to remember that listening makes all the difference, and that it’s not a one-button issue; that it’s the full continuum of care. Once we get beyond the HIV, maybe it’s breast cancer, maybe it’s diabetes, maybe it’s mental health. But you can be there to connect your patients to that care.
If you’ve enjoyed this episode, please share it with your colleagues, sign up for our newsletters on TheBodyPro, and follow us on Twitter (@BodyPROHIV).
Thank you to Susan Cole-Haley and Dr. John Schneider for this fantastic conversation. Additional thanks to our producers, Alex Portaluppi and Lucy Mueller; our project manager, Alina Mogollon-Volk; our content editor, Maria Elena Perez; and executive editor, Myles Helfand. Audio for this month’s episode was edited by Kimberly Buikema.
I’m Juan Michael Porter II, the Senior Editor of TheBody and TheBodyPro. And this is The Future of HIV Care.