#17: End racial inequity today, end HIV tomorrow
COMMUNITY VOICE: Phill Wilson | HEALTHCARE EXPERTS: Ofole Mgbako MD, Tonia Poteat, PhD, MPH, PA-C, Michelle Cespedes MD, MS | COMMUNITY REVIEWER: Dwayne Steward MPH
SOURCES
The Origins of Aids by Jacques Pepin (2nd Ed. 2021)
To Make the Wounded Whole, The African American Struggle Against HIV/AIDS by Dan Royles (2020)
The Boundaries of Blackness by Cathy Cohen (1999)
AIDS and Accusations by Paul Farmer (1992)
Impure Science by Steven Epstein (1996)
Let the Record Show by Sarah Schulman (2020)
Endgame, a documentary on Frontline (aired 2007)
A DISCLAIMER
This episode is the second of a two-part series (both tracing the history of HIV and examining this history’s relationship to racial inequity). The podcast will make sense without having listened to its predecessor, but we recommend that one first if you’ve got the time!
SHOW NOTES
HIV : a disease of social and racial disparities
Phil Wilson (our community voice): the way HIV works as a pathogen and the way the social determinants of health work around any pandemic is that the pandemic is not over until it's over everywhere.
The inequities that play out within the HIV epidemic are all a result of systemic injustice and racism across our institutions.
HIV/AIDS and the “white gay disease” narrative
Racial disparities in HIV existed from the moment the epidemic began.
An early study from San Francisco showed that non-white gay communities had a disproportionate share of AIDS cases
However, the decision to put forward “color blind” data (read: data that didn’t highlight racial disparities) helped extend the narrative of a white gay disease take root
Why did these disparities exist?
We can answer this by using Link and Phelan’s fundamental cause theory (thank you, Dr. Poteat), which states that lack of access to technology and resources drives healthcare inequity
In short, these disparities are the result of the chronic disinvestment in and disenfranchisement of Black communities
Cathy Cohen details how racist policing of rising drug uses, worsening poverty, and rising incarceration rates all dovetailed to put Black communities in AIDS’ path
How the “white/gay” narrative and Black AIDS activism mobilize but the perception of this work is undermined by racism
Phil’s point: the Black community does mobilize around AIDS, but is slower to start up
As a result, two forms of racism emerge:
The Black community is perceived as more or disproportionately homophobic
The Black community is blamed for its HIV/AIDs rates and “not seeking care” - when in reality, structural-level factors are what contribute to disproportionate impact of HIV in Black communities, not individual-level or even community-level behavior. Some of these structural causes outlined below:
Fundamental distrust of institutions (medicine) who structurally have not showed their respect for Black humanity
Lack of equitable access to care, as mentioned above/earlier
Beyond perceptions of Black AIDS mobilization, racism has a direct role in furthering inequities that fuel the HIV/AIDS pandemic in Black communities
Quoting Cathy Cohen on how marginalization can functions:
“Will Indigenous leaders actively support the struggles of the most vulnerable and marked in their communities, risking the hard won access, mobility, and respectability of some group members? Or, will elites engage in a form of secondary marginalization, further stigmatizing and policing the behaviors of their most disempowered members, while seeking again to prove their legitimacy as full citizens in this society?”
Racism fuels the faulty logical conclusions that Tonia Poteat points out:
“There's a disease that can be transmitted sexually, and it's having a disproportionate impact in black communities specifically. And then they layer on this idea of this sexualized black man with this life-threatening sexually transmitted disease. And it gets conflated all together to just add to the disproportionate impact on communities.”
Also, race is not biological.
Tonia Poteat: “Race is a social construct with implications for the whole of your life experience, which then gets embodied as chronic wear and tear.”
When we talk about race, we're really talking about race as a social category whose iniquities are driven by structural bias and discrimination.
Ultimately, the inequities of the HIV/AIDS pandemic mirror the inequities of a racist society. To quote Dwayne Steward (our community reviewer): “if you end racism today, you can end the HIV pandemic tomorrow”.
TRANSCRIPT
Phill: The way HIV works as a pathogen, and the way the social determinants of health work around any pandemic is that the pandemic is not over until it's over everywhere. Because as long as it's simmering anywhere, all of us are at risk being in danger again. An injustice anywhere is an injustice everywhere, none of us are free until all of us are free – and so, none of us are free from the risk of HIV and AIDS until all of us are free from the rest of HIV and AIDS.
[QHP THEME MUSIC STARTS]
Gaby: Welcome to Queer Health Pod! QHP is a podcast about queer health topics for sexual and gender minorities.
Sam: My name is Sam, I use he him pronouns, and I am a primary care doctor.
Gaby: I'm Gaby – she/her pronouns, also a primary care doctor.
Richard: And I'm Richard and I use he him pronouns…and I'm a primary care doctor and the medical director of LGBTQ clinical services at Bellevue Hospital in New York.
Gaby: And you're listening to QHP Season 2, HIV Inequities, Part 2.
[QHP THEME MUSIC ENDS]
Sam: Alright, math savants, you guessed it – yes, there is a part one. So if you missed that, don't worry, you can jump right into this one.
Richard: Part one tracks the history of HIV emerging into humans as a new disease and how the research and narratives into its origins is itself filled with racism and we explore how that racism impacts understandings of HIV.
Gaby: This episode will focus more on the modern day story of HIV and the health inequities that are still present today in HIV care. But, just like our last episode…we – and by that, I really mean Sam – did a lot of pre-reading to prepare.
Sam: For a list of reading on this topic just like in part one of this episode, please check out our show notes and we'll plug some important ones along the way.
Gaby: Someone who was actually interviewed in many of these books is our community voice, Phil Wilson. Phil was actually the first voice you heard on this episode.
Phill: my name is Phill Wilson. I live in Los Angeles. Now, I am a long LGBTQI activist and HIV/AIDS activist and (laughing) public health activist. And I am a person living with HIV. I've been living with HIV – actually, living with AIDS now – for about 4 years. About the entire duration of the pandemic.
Richard: Phil has been at the center of so much important activism. Phil was one of the founders of the National Black Lesbian and Gay Leadership Forum, as well as the National Task Force on AIDS. He has been acknowledged with National Awards throughout his activist career.
Sam: Before getting back to Phil, some framing: when we were planning this episode, we spoke to our community reviewer, Dwayne Steward, who himself is involved in HIV outreach in queer communities of color. One of our big takeaways from Dwayne was his comment that “if you end racial inequity today, you end HIV tomorrow.”
Gaby: And what Dwayne means by that is the HIV epidemic continues to impact Black and Latine communities disproportionately.
Sam: Before my parents text me what latine means, Gaby, could you just explain that really fast?
Gaby: Sure – uh, so "latine" is a word that has come out of the desire to find a gender neutral alternative to describe folks with Latin identities. The terms that you hear used more often are latino and latina. Latinx has also become a gender neutral term it's used, but it uses an anglicized word – the x isn't really natural, and that's employing the language of colonizers. So to me, as someone who speaks Spanish as one of my primary languages, latine feels much more natural linguistically.
Sam: Well, while you've set the op ed columnist at the times aflame (chuckles) why don't we get back to the point that we're trying to make. About half of the new diagnoses, as of the most recent data released, were in communities of color, both Black and latine. So, this vastly outrepresents their demographic slice of the U.S. population pie.
Gaby: Today's episode isn't about explaining health statistics or percentages, but is going to focus more on naming the way that racism has historically, and still does, function to create these inequities.
Richard: What Phil, Dwayne, and all of our healthcare experts want to get across is that HIV is not an isolated health issue. Rather, the inequities that play out within the HIV epidemic are all a result of systemic injustice and racism across our institutions.
Gaby: And, we hope, our discussion today will help dismantle these forces moving forward.
[Transition music]
Sam: One of my teachers once said, you can't make a diagnosis that you didn't name. And I feel like there’s sort of a corollary to that – you can't address racism that you haven't named.
Richard: Too often we don't name racism where it exists in medicine. And often that's because the people who are involved are too fragile or not thinking about it.
Gaby: Which is why we're going to start this episode by discussing how initial HIV research left race out of the picture. Then we'll discuss early AIDS activism and how the historical gay white narrative dominated at the exclusion of other groups who were suffering.
Richard: We'll also broach the subject of how, even when the Black community's activism around AIDS was acknowledged, racism created a double standard in the way that black activism was marginalized within larger, often white dominated activist efforts.
Gaby: And with that, let's bring Phill back.
Phill: My activism began now in a civil rights context. And so everything I've done since then, is really been centered, grounded in that movement. There's a saying that: where you start will determine where you end. And one of the things that happened in Black communities regarding HIV and AIDS was quite frankly, a misdescription of the HIV/AIDs pandemic in the beginning days. Now, here in the United States, HIV or AIDS was identified as a white gay disease. The articulation of it in the media was a white gay disease. The development of infrastructure and a response was in a white gay context. The face of the pandemic was white and gay. And that, quite frankly, undermined our efforts to address an epidemic that from the very beginning, whether we're talking about the domestic epidemic in the United States, and certainly when we're talking about the global pandemic.
Richard: So, to help us understand that is a beloved friend and colleague who focuses his clinical life and research on HIV inequities.
Mgbako: My name is Dr. Ofole Mgbako. My pronouns are he and him. And I'm an HIV primary care and infectious disease doctor at Bellevue and NYU.
It’s a sad story when you go back to the beginning, because I think a lot of decisions that were made early on in terms of who was kind of written into that history – who was prioritized – really had reverberations thereafter. There's a study in JAMA in 1984 where they weren't looking at patients in clinics, just patients in the community and San Francisco. It was looking at kind of racial and ethnic differences of HIV prevalence. And even then in 1984, you could see that black and Latino patients had a higher disproportionate rate of HIV prevalence compared to their white counterparts. And this study was specifically among gay and bisexual men. And then they also looked at individual behaviors in terms of sexual risk factors using needles, number of sexual partners, condom-less anal intercourse. And there was no difference between any of those groups, right? And so even at the beginning, the story that we know now, it's the structural reasons. It's the access the lack thereof that really is at the root of these disproportionate numbers. it's sad because as we've made huge strides as a country, those inequities that become more and more stark because the improvements that we're seeing in numbers are really concentrated in certain communities. So, the decisions kind of made at the beginning to not use that data has led to what we see today. It was so much seen as a white gay issue. And it just shows you the way that our society stereotypes and diminishes some of these really complex issues down to something as simple as, okay, white gay men in New York city and San Francisco and LA that's where the problem is that itself is extremely problematic and homophobic and on an epidemiological level, but you see how that can lead to the disparities that we see today.
Gaby: There's a lot to unpack in what was just said, but I want to zoom in on one particular quote.
Mgbako: And so even at the beginning, the story that we know now, it's the structural reasons. It's the access the lack thereof that really is at the root of these disproportionate numbers.
Gaby: To discuss some of these structural inequities, we wanted to introduce another healthcare expert.
Poteat: I'm Tonia Poteat. I'm an associate professor of social medicine. I'm a researcher with the center for health equity research, and I'm a physician assistant who's been providing HIV care since 1995.
The structures that lead to expanding inequities that we see have been in place long before HIV. And I think HIV was a site where those inequities became more pronounced and more visible over time. So there's a group of researchers at Columbia – Link and Phalen – that write a lot about what's called fundamental cause theory. And in the theory – which I just call the truth (laughs) – if you don't deal with the structural factors like: systemic racism, patriarchy, all of those things, then no matter what you do after that – whatever intervention you have to reduce HIV or whatever – the people who are benefiting from the current system will then benefit from those interventions and the people who don't benefit from the current system will not benefit from those interventions. So you'll just see widening gaps. You will not see closing gaps, even as you make progress in addressing a health condition.
Gaby: Putting this in a fundamental cause theory framework, we can say that long before HIV's arrival, there were conditions in place that basically set communities of color up to suffer more and be more vulnerable to the impact of HIV and AIDS. And these conditions include the legacy of slavery and racism in the United States, as well as the chronic disinvestment in and disenfranchisement of Black communities from institutions like voting. These things have worsened Black health in the United States.
Sam: Cathy Cohen in her book, The Boundaries of Blackness, explores black indigenous politics. She also breaks down the different ways that marginalization functioned within those politics to analyze how the HIV and AIDS pandemic played out in black communities.
Two takeaway points from her book on this topic are:
1. One, that the historical forces like the heroin epidemic, increased policing of clean needle use, increased incarceration rates and worsening poverty, all of those came together to make higher AIDS rates in black and latine drug users, again, despite similar rates of IV drug use when compared to white peers.
2. Another big takeaway from her book is that communities of color, poor communities, and incarcerated communities all had less data and clinical surveillance. So, from that point of view, they were structurally set up for medical providers to know less about the epidemics that were raging in those populations.
Richard: One last point again, summarizing from Cathy Cohen: when the CDC named Haitian people as a high risk group, they faced significant backlash, rightly so, and later backtracked on that. But from then on, the CDC was very squeamish about highlighting racial demographics and HIV at all.
Gaby: And what that point highlights, Richard, to me, is that race was excluded from the narrative in many different ways. So first, as we were talking about earlier, it straight up was ignored in scientific research. But secondly, institutions like the CDC became afraid to name it due to what I conceive of as appropriate resistance to the way that they framed race when they talked about it. And all of these things really entrenched HIV early on as a disease that was relevant in white gay communities, which had really important downstream impact.
Phill: When we began to organize in Black communities, there was already a body of information that led people to believe that the disease was about white gay men. And so it made sense that the initial reaction in black communities was, you know, “this is a problem that's happening in one place. And now they're looking for someone to scapegoat. And they're looking for us to be the ones to be the scapegoating." And so initially, there was clearly a resistance in, in Black communities, among Black leadership and among Black clergy to say, Wait a minute here. We don't have information to suggest this is an issue in our communities, and so why is this message coming to us at this point in time? And so there had to be work, you know, to bring the data up to speed, to the perceptions. Had that information been communicated differently, it would've changed the trajectory of the pandemic.
Black AIDS activists understood that if we were going to be successful in responding to the HIV/AIDs pandemic in Black communities, we had to mobilize all of the institutions, all of the instruments, all of the levers in our communities. the only way to do that was to raise awareness about the the data that showed that HIV/AIDs was something that was absolutely relevant in our communities. And chronologically, a broad mobilization in Black communities lagged behind the mobilization that happened in a white gay context. What happens is that our mobilization gets pathologized. Now when, in fact, if one looked at, for example, Larry Kramer's work in The Native and the Village Voice where they're talking about this new pandemic, the truth of the matter is there was resistance among white gay men in the beginning. AIDS Project Los Angeles was created because the Gay and Lesbian Center in Los Angeles was reluctant to take on this issue because it was afraid of the stigma. It was concerned that this new disease would derail efforts around equality based on sexual orientation. And so when that then is replayed in a Black context, then we have a whole different narrative.
Richard: The Black community had to first invest energy in repairing the narrative that the media and the CDC created. And then, when they set out to do that, they were met with this racist double standard.
Sam: Right, this recurring trope that the Black community is more homophobic. And in general, just blaming marginalized communities more for the problems that affect them.
Richard: So another way that racism functions within the medical community, particularly around the HIV and AIDS pandemic, is that there is this story that has been found to be incorrect that individual black people don't get good viral control because they don't engage with their health care providers or they don't care. When truly what's going on is that there is a healthy and often appropriate distrust of medical institutions because of racism and because of the way people have been treated in the past.
Phill: If unarmed, black men are being killed in the streets by police. And our society knows this is happening, but they don't care, it makes it difficult for me to trust any of the institutions. So when I go into a hospital and the personnel in those hospitals look like the police, I'm not gonna trust those institutions. I have a fundamental distrust that is born a reality of a structure that doesn't care about me. We keep going back to the tired story about Tuskegee. And we ignore the fact that the reinforcement around medical mistrust happens every day. And so whether we're talking about no police violence, whether we're talking about health inequality, whether we're talking about voter suppression, whether we're talking about, you know, reproductive health, all of these are indications that there's not a respect for our humanity and our humanness.
Gaby: Let's introduce our last health expert who will talk about how this continues to play out today.
Cespedes: Hello my name is Michelle Cespedes. I'm an infectious disease physician here in New York City. I'm actually the director of the inpatient HIV service at Mount Sinai hospital in New York City. So I've been doing this for over 20 years now. Unfortunately you can't see how young I look for my age! But my areas of interest have always been HIV In subpopulations that are disproportionately affected by the epidemic.. What I've found from the administration side or the side that says you know Dr. Cespedes is you know, like you guys can't see me but I am a tall African-American woman, you know New York city born and raised – but “Dr. Cespedes we'd like you to help inform populations who we'd like to either get COVID vaccine or HIV tested or a myriad of things over the years and really help people understand you know what vaccines are about and what prevention is about.” So one of the things I like to point out to them it's not necessarily a knowledge gap…people understand what vaccines are for. It's more of a a trust issue, right? So you know really don't insult people's intelligence, cause that makes it hard for them to, you know, want to partner with you or come in or vote for you or walk into your institution or think of it as a safe place.
Richard: This dynamic, one of miscommunication or misattributing a reason why a community may not access something available to them, is vulnerable to having racist narratives slapped onto it and blaming marginalized folks instead of blaming the institutions.
Phill: In reality, the process of mobilizing Black communities was really easy once we were able to communicate the magnitude and the impact and the consequences on in and on Black communities, then the response was actually pretty quick and robust. Within a very short period of time, we decided that one of the things that needed to happen is that we needed to engage Black media in raising awareness about the HIV/AIDS pandemic in black communities. And so I launched a campaign, to get every black magazine in America to do a cover story on HIV and aids at the same time. I put together that campaign over the course of five days. In five days, everybody was on board. Ebony, Essence, Jet, Black Enterprise, Vibe Magazine, Heart and Soul, you know, all of them were on board over the course of five days. By simply presenting the data to them. Accurately presenting the data. You know, over the course of six months, we were able to convince every major Black civil rights organization in the country to have an HIV/AIDS initiative. Over the course of a year, every one of those organizations not only had an AIDS plan – a strategic plan – but also had a point person on HIV and AIDS. So in the end, I think that getting over that were the major barriers in place.
Gaby: We talked a lot about the role of Black media here, but Phil also spoke to another big institution in the Black community, Black churches, and how those have been pathologized in narratives around HIV.
Phill: I mean, even the challenge around, homophobia amongst our institutions and the issue around the power of religious institutions, again, pathologized black churches for challenges around accepting, you know, homosexuality in accord with their religious doctrine. But you don't hear that same kind of narrative around white evangelicals. Now, don't get me wrong, I don't believe that Black churches are not homophobic or we're not homophobic. I just don't believe they're any more or less homophobic than other religious institutions. I don't believe that Black communities are more homophobic than other communities. I don't believe that Black families are more or less homophobic.
Now, I do think that there is a context which cannot be ignored. And so the way I describe the context is this: the sanctuary, the protection that our Black communities offer us against racism is extremely important to us. Now it is necessary for our survival because racism in our society is so pervasive. And so when we're attacked there, where do we retreat to? We retreat to those Black communities. And if those Black communities are hostile, then we have nowhere to go. So I will acknowledge that the experience of the impact of the rejection in Black communities can be more severe. But I don't believe that the magnitude of it is more or less severe than it is in other racial/ethnic communities. And that shows up when we talk about HIV and AIDS because people want to say that “well, the black communities will slowly respond because of homophobia.”
Sam: I did want to pull something out of Phill's quote and bring it back to Cathy Cohen.
Phill: If those black communities are hostile, then we have nowhere to go.
Sam: In her book, Cathy Cohen talks a lot about the ways that communities that are marginalized – one function of that marginalization, one way that it's going to show itself, is that those communities will police within that community to keep behaviors that are seen as quote non normative or threatening to the larger group in line. So here I'm just going to quote from her book to make this point.
“Will Indigenous leaders actively support the struggles of the most vulnerable and marked in their communities, risking the hard won access, mobility, and respectability of some group members? Or, will elites engage in a form of secondary marginalization, further stigmatizing and policing the behaviors of their most disempowered members, while seeking again to prove their legitimacy as full citizens in this society?”
So I think that quote really encapsulates what Phill is talking about, and the way that, no, these communities are not more homophobic, but there is a function of when you stigmatize entire communities that, yes, like, where else do people go when they can't go back to their community?
[Transition music]
Sam: This next section of the episode is going to focus on the way individuals get blamed along racial lines within the epidemic of HIV and AIDS.
Phill: One of the challenges is that then the narrative was the changing face of the epidemic now. Where in fact, no, the epidemic, the face didn't change, it's that there was, there was a changing understanding and acknowledgement of the epidemic.The changing piece of the epidemic was a dangerous narrative as well, because then it was, "Well, Black people used to not be infected and now there's all this data, and now why are they now being infected when there's all this information?” When basically what was happening is that the publication of the data was just catching up with the facts that existed all along. Then that's what drove the stigma around it. And, and that developed this new narrative.
Sam: Dr. Poteat had a take on this too –
Poteat: There's this historic and white-benefiting narrative of Black men as hypersexual and predatory. And I think that that crosses sexual orientation lines. And so now there's a disease that can be transmitted sexually, and it's having a disproportionate impact in Black communities specifically. And then they layer on this idea of this sexualized Black man with this life-threatening sexually transmitted disease. And it gets conflated all together to just add to the disproportionate impact on communities.
Richard: Phill also acknowledged these harmful stereotypes and added that the data contradicts them.
Phill: Over and over and over again, what you discovered were two things: that Black gay men were less likely to participate in the most at-risk behavior relative to anal sex men and the actual transferring [of] bodily fluids and less likely to have as many partners as their white gay counterparts. So, I have no judgment about how many partners anyone has or what type of sex anyone wants to have. That's not my point. My point is that the way that racism raises its head is that it judges different populations differently based on the same behavior or it misses differences in between populations that actually drive things like pandemics and epidemics.
Poteat: Because we reduced so much of what we think about as healthcare risk to individual behavior, then if you have a infection that's transmitted through sex, for example, then people assume that folks who are heavily impacted are either having more sex or using fewer condoms or having more partners. And that has been the assumption around disproportionate impact of HIV in Black communities. But there has been a growing body of research that indicates that Black gay men and white gay men do not have differences in their sexual risk behavior, for lack of a better term. What they have differences in are those structural factors that we talked about largely driven by racism.
Richard: Dr. Cespedes spoke about how personal risk is perceived to be based solely on individual decisions.
Cespedes: I think some of the biggest misconceptions about who's at risk are a big barrier. Like, I'm saying, even speaking to women sometimes or or women who have sex with men, like “I don't have sex like that. I don't use drugs.” And I explain to people I said, “you know I – I live in Chelsea here in Manhattan you know relatively high HIV prevalence rate for this zip code. And I say look you know I am a doctor I have more degrees than you know my husband has in his last name but I also live in Chelsea, right?” I explained to my students “Really I actually have a higher risk of seroconverting are becoming HIV infected than let's say a woman who is having sex for an exchange for money or drugs in Salt Lake City, right, who is actually actively using drugs just by the mere fact that I live in a place where there's more HIV.” So I think that takes it away Not necessarily what body part goes into what orifice it's how much HIV Is around where you are.And just the fact that we often live in cities or even just communities that tend to date or interact with each other I explain to people that you know prison think of prison as its own zip code, right? If there's a higher risk of HIV there, people need to know their status when they're coming and leaving. If there’s a higher likelihood that there are fewer partners that you're interested in, right, because of more of your partners might be in prison, there might be fewer people left to actually date and have sex with and there might be higher rates of concurrent partnerships. When someone leaves the penile system where do they go? They go back to the zip code they usually left, right? So there it's almost like a vicious cycle but it's not necessarily you know dangerous sex or who you're more how how many partners you have.
Gaby: If racism is starting to seem structural, if the individual is starting to lose control for something medical narratives fault them for as individuals, then we're getting our point across.
Richard: And maybe the most "in your face" version of this, is this widely debunked idea that people of different races have different biology. That's been widely disproven by the Human Genome Project and everything we know and understand, and that racial inequities are not based on biology. That In certain conditions, we may be talking about ancestry where there were gene clusters, but in general, we're really talking about race as a social category whose inequities are driven by societal and structural bias and discrimination.
Poteat: Race is not a gene. Race is social construct with implications for the whole of your life experience, which then gets embodied as chronic wear and tear. And that is likely why we see these differences in addition to access barriers to care, and it has nothing to do with how dark or light your skin is, the texture of your hair, or the size of your nose- all these crazy things that we've decided to call race.
Gaby: Phill talks about how this myth that race is a biologic construct comes up all the time in his activist work, as a misconception that he really works to debunk
Phill: The issues around the disproportionate impact that HIV and AIDS has had on Black communities is not biologically based. The efficacy around the the treatments for the virus are not biologically based beyond the point that there are social determinants, you know, of health that impact the biology. So, someone is under fed or undernourished or: if you have a high propensity for diabetes…these are things that are relative, but even those things are driven by social determinants of health. And so you can collect data downstream and you can see that the water's polluted, and you can blame the people who live next to the river downstream…totally ignore the fact that way upstream, there's another group of people who are in fact polluting the river.
Richard: Dr. Poteat brought this home when we asked her about what the future of HIV care should look like.
Poteat: We have to think about HIV prevention and HIV care differently. Instead of thinking about it as: “How do we get people into care?” And I hear people say that all the time – “How do we reduce barriers to care?” where you have to think about what is this person's life like, and how can we restructure a society in which people thrive, right? We start at the beginning of those tasks to create equity in, in, at the beginning, then I don't think we'd be in a situation where we're looking at whether or not somebody got tested and linked to care and those inequities at that point. We would, we would have prevented people from as Link and Phalen say, being at risk for being at risk.
Mgbako: There's always been an effort to really kind of present a simplistic understanding of what's going on. So of course, you know, it was the homosexuals at first and then it was the haemophiliacs and then it was this group and, then it was that group. I think a perfect example is the "down-low" phenomenon, right?
In the late 1990s and the early two thousands, when the rates of HIV among Black women in the U.S. started rising, people wanted an easy answer. So they just went to the "down-low" phenomenon and said, okay, it's these roving bands of you know gay Black men who are living ostensibly straight lives with women, but then go behind closed doors and are having all sorts of deviant sex and contracting HIV, and then passing it on to everybody in their community. The number of books about this, and dissertations about this, that debunk this, that establish that this isn't a phenomenon. Also, it was just blown way out of proportion in terms of like that actually driving a full-blown epidemic in the community.
And so I think for every group throughout the beginning from the beginning of the, HIV epidemic till now, they faced this kind of reduction of their suffering to something that's kind of simplistic when it's actually quite complex. And it's actually tracking a lot of the ways that we've structured society. right? So the fact so many of the numbers of new HIV diagnoses are in the South, right? Half of new HIV diagnoses in the south in 2018 and the lion's share are among Black folks, and the lion's share are among gay and trans folks. That's not, you know, that's not a coincidence, that's because of how we've structured our society and how we've structured access and opportunity. And so if you think about going back to the beginning, so much of it is also about that. The complexities of the epidemic have to do with when it's presented in certain ways, like it's only this group or only that group that can really silence people who are suffering.
[Transition music]
Richard: Today's episode was about naming the ways racism propagates racism, or the way that the inequities in the HIV epidemic have been worsened and perpetuated by a variety of the functions of racism.
Gaby: We started this episode off by discussing how early data that highlighted the immediate disproportionate impact of HIV and AIDS on Black U.S. communities was not messaged out in that way by public health officials. And instead, there was a race-blind, race-negating approach.
Richard: We also talked about how racism made a social and community level epidemic one of individual blame and how that came together with racism to worsen the stigma experienced by black and brown folks with HIV.
Sam: To learn more about this topic, you can check out our show notes for a full list of resources that we recommend. And, if you're curious about the story of HIV's emergence as a human disease, you can listen to the first part of this two episode series.
Richard: Here's Phill with some closing thoughts.
Phill: the biggest narrative that I would want to address would be continuing the conversation around power, individual power, that whether or not HIV is over or not. That we do have the power, we have the tools, we have the knowledge. We have the data to have a say in how it impacts our lives and our communities. we don't have to be victims. We do not have to be defenseless and vulnerable. We can take actions, we can protect ourselves from infection, we can make sure that we're not transmitting the virus. We can make sure that our communities have access to the resource that are available and that they utilize those resources. These are all things that we can do, and, and that, that is the focus that I would hope that is… those are the messages. And with the right messengers, I believe will actually get us to the end of the pandemic, which is what we all know these days are fighting for and hoping for.
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Richard: QHP is power sharing podcast that puts community stories in conversation with healthcare expertise to expand autonomy for sexual and gender minority folks.
Gaby: To get access to today's episode transcript, as well as more information on the books and research we used for this episode, please check out our show notes at www.queerhealthpod.com. Also, we would like to acknowledge the many community resources that went into the creation of this episode.
Sam: Such as the input and direction of our fabulous community reviewer, Dwayne Steward.
Gaby: If you found this podcast episode helpful, please help others find this information by leaving us a review or subscribing if you can on Spotify or Apple. We've also recently launched an email newsletter on our website that can help you get email updates about when new episodes are coming straight to your inbox.
Richard: Our handle is @queerhealthpod on Twitter and Instagram. You can also email us at queerhealthpod@gmail.com
Sam: Thank you, as always, to Lonnie Ginsberg, who composed our wonderful theme music. Opinions on this podcast are our own and do not represent the opinions of any of our affiliated institutions. Even though we are physicians, do not use this podcast as medical advice and instead consult with your own health care provider.
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