TRANSCRIPT: TransLash Podcast Episode 52, ‘Monkeypox and the Trans Community’

Imara Jones: Hey, TransLash family. It’s me, Imara Jones. Welcome to the TransLash Podcast, a show where we tell trans stories to save trans lives. Well, we’re back. We’re back after our summer vacation. We hope that you were able as well, during the summer, to take some time out and to be restored and to get restoration. It’s so important during this really difficult time. And I know that on behalf of all of us at TransLash Podcast, we’re hoping that you were able to get it in. We also hope that you’ve been able to note and see all of the love we’ve been getting from Apple Podcast and the way in which we are the spotlight of Apple Podcast this month. That shine is also yours.

So we’re all entering the Fall now. Oh, kind of, sort of technically Fall, I think, in a couple of weeks. But, you know, basically, for us, it’s Fall. And this is the third Fall where we are facing a pathogen, and not only is that COVID which may or may not be on the wane, but also now, monkeypox, which has quite frankly exploded over the summer. And monkeypox is a disease like COVID that is disproportionately impacting our community, particularly those of us who are Black and Brown. That’s why we wanted to start out this Fall with an emphasis on the ways that we can learn about what monkeypox is, figure out how to respond to it, and learn the ways that we can continue to protect ourselves at a really critical time. This is an essential episode. We spent a lot of time on it. And I think the urgency that we feel is something that you’ll be able to connect to. There’s a lot of hope in the way that trans people have been responding to monkeypox, and so we know that that will inspire you, too.

First, we’ll talk to Dr. Asa Radix, who’s been on our podcast before, about the outbreaks origins and the current state of treatment and vaccine options.

Dr. Asa Radix: There are still questions, but this is definitely in an emergency and in a time of scarcity, like one way to be able to give this vaccine that’s so urgently needed to more people.

Imara: Then, we’ll talk with Dr. Elle Lett, an epidemiologist, about how and why our public health systems are failing the trans community and what we can do about it.

Dr. Elle Lett: If monkeypox was sweeping through everyone, we will see a totally different response. So you hit it right on the head. The degree to which we respond as a society is directly related to how much we care about the people disproportionately impacted. I’m sad to say that’s not nearly enough.

Imara: These two powerful and necessary conversations are coming up later in our podcast. But like always, we’re going to start out with some trans joy.

[background music]

Imara: With the COVID-19 pandemic, and the monkeypox outbreak, and the mini political attacks on trans healthcare over the past few years, I really wanted to take a moment to recognize the trans medical professionals out on the frontlines, who are making sure that all of us get the care that we need. One of those healthcare workers is Bailey Ferris, an ER nurse in Dallas, Texas. In addition to providing direct patient care, Bailey works on the Diversity and Inclusion Committee at his hospital, where he hopes to provide visibility and better experiences for trans patients.

Bailey Ferris: Being visible is-is really critical to me. I have a, a little trans flag pin that lives on my badge, and I make sure that that stays visible. And that’s not something that’s large in the scheme of things, but it’s a clear relief to some patients to come in and be able to visibly see that there provider is either an ally or a queer person. Noticing patients notice that and then seeing the response from them when you see another person see you, it’s, it’s significant.

Imara: Bailey Ferris, you, and all of the other trans healthcare workers out there are trans joy.

[background music]

Imara: Now, I want to welcome Dr. Asa Radix. We’re very lucky to have Dr. Radix on the show today. That’s because he’s been incredibly busy on the frontlines of the monkeypox outbreak in New York City. Dr. Radix works at Callen-Lorde Community Health Center as the Senior Director of Research and Education. He’s currently leading the research around monkeypox treatment. He is also helping train the next generation of medical workers as the Clinical Associate Professor in the Department of Medicine at New York University. Dr. Radix received their PhD in Epidemiology from Cambridge University.

He has over 20 years of experience providing primary care and hormone therapy to trans and non-binary people, and is recognized as an expert in transgender medicine. In fact, as we have discussed before on the show, Dr. Radix is currently Co-Chair of the World Professional Association of Transgender Health Standards of Care Revision Committee. That’s the group that sets norms for trans healthcare and new standards that are set to be released later this month. Dr. Radix has been working on those. So Dr. Radix, Asa, thank you so much for joining me on the show today.

Dr. Radix: Yeah. Thank you for the invitation. And this is such an important topic, so I’m glad that I’m here to talk about it.

Imara: Thank you. So, first of all, I’m wondering if you can tell us what monkeypox is, actually what it is, and what it isn’t. I know that the name monkeypox is actually a misnomer. So can you just tell us where the disease comes from and why it’s popping up amongst humans right now?

Dr. Radix: Right. So, first of all, I think it’s important to recognize that monkeypox virus infections are not new. Monkeypox is caused by an orthopoxvirus. We just say poxvirus. And it belongs to a family with other poxviruses. For example, smallpox, which was eradicated in the 1970s, but also cowpox and horsepox. And the reason why all these names have to do with animals is because it’s what we call a zoonotic infections. So it’s a virus that has been found in animals, but can spread to people. And you’re right about the name. So the reason it’s called monkeypox is because the first cases of the virus, when it was isolated in the 1950s, it had occurred in monkeys.

Imara: I understand that there was a possibility that we would have seen this earlier if it wasn’t for COVID and people spreading around. So as you say, this is not a new virus, but what’s the most recent history around this virus which can help us understand better how we got to this moment?

Dr. Radix: Right. So we have seen small outbreaks before ’22 in the USA and Europe. We’ve seen like sporadic cases now and again, maybe one or two a year. In 2003, there were many cases in the Midwest United States that were related to pet shop prairie dogs being infected from African rodents. So there were a number of cases, almost 50 in the Midwest. And then as far as currently, in 2022, there were a few cases in the early part of the year that were thought to be related to travel and those were seen in the United Kingdom. And then they started seeing a couple other cases that didn’t have any association to travel, so that was really quite unusual. And then all of a sudden in May, we started seeing cases across Europe, everywhere you can think of — Belgium, Spain, Portugal, Sweden, Germany, and of course, finally, in the United States.

The fact is, as I said, it’s been endemic in Central and West Africa, really, for decades. Unfortunately, the world never paid attention. We really didn’t move ahead with vaccination. We didn’t move ahead with making treatment available. I think it’s appalling that it took, really, until an outbreak happened in the West for people to sit up and say, “Oh, this-this is something we need to treat. It’s impacting other communities outside of Central and West Africa.” It is, I think, problematic that, you know, we didn’t pay attention when this was mainly impacting Black people.

Imara: We can see contours of that impact here in the United States, of it impacting, at first, historically marginalized communities with a variety of intersections. I’m wondering, from your standpoint of where you sit, why do you think that this has landed, firstly, so squarely in queer communities, and increasingly, in Black and Brown queer communities as kind of a first wave in the US?

Dr. Radix: I mean, I spoke about, you know, the cases in May occurring across Europe and then in the United States. And what they found was the virus, this infection was mainly impacting young men who have sex with men who are cisgender. You know, these weren’t people who had had recent travels. And what they found was that most of the exposures had taken place at, you know, parties, and raves, and [inaudible], and places where sex was occurring. So once it’s-it’s in a community and people are continuing to have close contact with other people within that community, it just sets the stage for transmission. We know that people have sex close contact within networks, right? So for African American cisgender man who are having sex with other men, their partners are often African American. You know, the same goes for Latinx communities. You know, people tend to have social networks that look a lot like themselves. So once it’s in a community, you’re going to start to see it spread. So, that’s really why it’s in particular communities. But understanding that this is a virus that can impact anyone. It’s starting to be seen outside of these communities now.

Imara: I think that the point that you made is really important for us to underscore that, and we learn this with COVID, just because a pathogen starts in one community, it doesn’t necessarily stay there. But on this particular point, I’m wondering why we are seeing disparities in access to treatment and access to testing. Kind of the same things that we saw in COVID. Can you talk a little bit about the way in which broader disparities, in the healthcare system particularly, as they impact Black and Brown people, people who are TGNC non-binary, LGBTQ were at large, how we’re seeing this play out in monkeypox?

Dr. Radix: Yes. I mean this is a really important question. The fact is that the healthcare infrastructure in the United States, especially around public health, has really failed Black and Brown communities, and actually, all marginalized communities. And so, you know, we have that issue. We also have the issues that we have treatments for this, right? We have a medication called Tecovirimat or TPOXX that can be used to treat monkeypox, but you need to get in front of a medical provider to get it.

And the same thing goes for vaccination. Vaccinations, when they are only being given in certain places, predominantly the health department when this started, and you have communities that aren’t going to go because they’ve had a long history of being discriminated against. You know, you set the stage for this virus really going out of control in these community. So we’re definitely seeing, if you look at the-the statistics, two-thirds of the cases of monkeypox are happening in Black and Brown communities, but they’re only getting a very small percentage of the vaccines that are available. So, you know, this is the same as COVID. This is the same as, really, any infection that is communicable. When you can only get treatment or vaccination at very particular access points, you’re going to see Black and Brown people, and trans and gender diverse people, actually LGBTQ people altogether, not getting appropriate access.

Imara: So let’s chart on an individual level what some responses might be because if you’re able to get access in some way, there are some good news with monkeypox in quotes. Firstly, how does monkeypox present itself? What should you look for? I know that… You know, I have friends who are, you know, if they get like, um, a pimple on a part of their body, suddenly are concerned that it’s monkeypox. And so I know that there’s lots of cases like that were, you know, any type of presentation on the body is now seen as a cause for concern. And I’m wondering, from your standpoint, what should people be looking for for monkeypox to present itself? What does that look like?

Dr. Radix: So it’s really varied, and I think that’s what’s different with like monkeypox today compared with cases that we might have seen in years past. So it can present in many different ways. First of all, it does depend how you were exposed to monkeypox because it’s going to impact that part of the body more because it’s skin to skin. So generally, what happens is say you got exposed to someone today with monkeypox and you weren’t vaccinated and you didn’t get a vaccine afterwards. Usually, in anywhere from one to two weeks, you might start feeling a little bit unwell. I mean, this could be anything from like muscle aches or fever or swollen lymph nodes, you know, especially in the groin area. And then, a day or two after that, you might start to see a rash. And that could be just one spot. It could be a cluster of spots. They can be anywhere on the body, but we’re starting to see, you know, in this outbreak, more so in the genital area. It can be in the anal area. So around the anus and inside the anus. Also, around the mouth and inside the mouth.

The spots can just be one or you, again, you can get a cluster. Or many some people have these spots, this rash, all over the body, and they can look very different. As you said, they can look like a pimple. They can look like a vesicle, which means like a, a little blister. They can, over time, start getting crusted over and then that kind of cross will fall off. The ones in the mouth, it’s just like if you get a mouth ulcer. I’m sure everyone’s had a mouth ulcer. They can be like that. They can also be incredibly painful, but again, it can vary from person to person. And some people never get what we call the prodrome which is a couple days before the rash feeling a bit unwell. Some people don’t have that. The first thing they get is the rush. I think that’s why it’s a little problematic because many medical providers had never seen monkeypox before. So I think the first people who came in, they were being told, “Oh, maybe this is syphilis,” or “Maybe this is herpes.” And it took a while before medical providers became educated, and so, better able to diagnose people now.

Imara: Yeah. And I think that that’s one of the things, is that it’s so varied initially and symptoms that it’s been easy to dismiss people. I think we’ve heard many instances of people actually trying to get their healthcare provider to pay attention to them, and being dismissed. I’m wondering if you can tell us a little bit about the medical impact of monkeypox. Because in the media, one of the things that I’ve heard so often is that, “Well, it’s not deadly like COVID. So this is generally is okay and we don’t really need to worry about it.” That’s kind of the subtext. It just really struck me because it’s like if a disease doesn’t kill you, then it’s not really something to worry about. But when I dug deeper, I saw that with monkeypox, of course, the pain that people have endured is beyond anything that they say that they’ve experienced before. But on top of that there can be these lingering impacts on the body and on overall health. So I’m wondering if you can just tell us about the impact of monkeypox on the body and whether or not you do think that, from a health standpoint, this is something to be concerned about even if it doesn’t kill us.

Dr. Radix: This is a serious infection for many people, and, you know, there have been deaths reported. Now, I just want to say it isn’t usual. Uh, I know in Nigeria, when they looked at people who died from monkeypox, there were about three percent which is not insignificant. We’re not seeing that in the U.S. I think, because people have good nutrition status and they’re generally pretty healthy. But we still need to be aware that it is possible. So what are we seeing? As you pointed out, pain, especially if the lesions are in the mouth or in the anal area. We’ve had people say that this is about the worst pain they’ve ever experienced. It prevents people from being able to move their bowels, like going to the bathroom, being able to urinate because of the severe pain, unable to eat because they can’t swallow. I mean, there was one person who lost something, like 28 pounds, during the course of their illness because they had such difficulty eating.

The other issue is that you can get scarring. So where you have the lesions, yes, they can score. So that’s really important. If you’re thinking about sensitive areas. For example, eye tissue, the anal area, the urethral area. So people who have it in those areas, if they should get scarring down the road, that could be fairly serious. You know, you can get stenosis or narrowing and that could be permanent. Um, for people who are prone to keloid formation, so mainly Black and Brown people, you could get extensive scarring on the body. So yes, this isn’t insignificant and we should definitely be paying more attention and not just shrugging our shoulders and saying, “Oh, most people will get over it.” You can get quite serious complications.

Imara: Right. Right. However, there’s testing, there’s treatment, there’s vaccination. Can you talk to us about how each of those work, and whether or not we are able to have access? Because I know that one of the things that’s been an ongoing issue with monkeypox is that even though these things do exist, there’s been incredibly limited access. So I’m wondering whether or not that’s improving. And if we have a sense of telling people how they can get tested, you know, how they can get treated, and if they’ve been able to avoid the disease so far, where to go to get vaccinated, and how vaccinations, generally, are going.

Dr. Radix: Those are all really good questions. So if you have a sore, a rash usually, what happens is, for testing, if it’s like a-a little sore blister, they unroot it, meaning they just take the top off and they put a swab and that’s swab was then sent to the lab and they run something called a PCR test, which we’re all familiar with now because of COVID. We don’t generally wait for the results before we consider treating someone, so I’ll just move on to treatment. There’s no real treatment for monkeypox, but we do have some medications that have been approved by the FDA for smallpox. And one of those is Tecovirimat that we call TPOXX. That became available. It’s part of what we call the national stockpile and it was really developed in case there was the bioterrorism attack with smallpox. Unfortunately, because it is not approved for monkeypox, this medication has to be given as part of a research protocol. It’s called Investigational New Drug or IND protocol. And i-it does require quite a lot of paperwork.

Actually, in the beginning of this outbreak, Callen-Lorde is one of the first places that got approved to provide this treatment. And it was taking us up to four hours to do the paperwork for a single person to access this medication. It took a really long time. The person had to sign a consent form. I mean they still do. There was a very, very lengthy intake form. You had to go online and enter them into a database. You had to give the person a diary to fill out. You had to take photos. And all of this had to be uploaded to the CDC portal, and then you need to see people ongoing, like at seven days, 21 days, 40 days. It was really not sustainable, especially for a busy clinic like ours. Luckily, the CDC has subsequently revised their protocol and it’s much, much easier now.

So we still have to do the intake and we still have to do the database and the consent form, but we no longer have to take photos. They’re optional. And the follow-ups are also optional, which means we’ve been able to treat about 155 people. Not everyone gets treatment. Really, it’s for people who have severe symptoms — you know, anal, urethral, or eye lesions, or on the face close to the eye. Or if your child, if you have, you know, a history of immunosuppression, so people living with HIV. So they have kind of strict criteria. So, if you came in to see us and you had one lesion on your thumb, we’re not going to offer you this medication. It’s six tablets a day for 14 days, and the medication does have some side effects. So kind of weigh the risk of not treating and the side effects before we determine that someone needs to get this.

Imara: And then, can you talk about the vaccination and where we are on vaccinations? One of the things I know that’s happened is that because there wasn’t enough in the national stockpile or available to the government, that one of the things they have to do is to divide the original vials into five doses. And I’m wondering if that is working in terms of providing more access and if we believe in terms of… Or if you have found from the research and observation that you’ve done, if that vaccination approach is working.

Dr. Radix: Very difficult questions. Um, so there are a few vaccines available. Two, really. One is called the JYNNEOS vaccine, and the other is the ACAM2000. But we’re just using the JYNNEOS vaccine right now. Again, this was also developed for use in the event of a smallpox by a terrorist attack, but it is approved for prevention of monkeypox. And we like to use the JYNNEOS because it’s much safer. It doesn’t replicate — meaning that when someone’s vaccinated, they can’t transmit the virus to someone else because it’s a non-replicating live virus vaccine. So when it was approved, it was to be given subcutaneously, just like most of the vaccines that you generally get. And it’s two doses, so you get one and then you get another one about four weeks later, minimum of four weeks later. There aren’t enough vaccine doses to vaccinate every one, Right?

There was a small study that was done a few years ago. I think it was in 2015, where they showed that if you gave the vaccine intradermally, so that’s just under the skin, that you can just make that a little blurb underneath the skin. You got the same immune response as when you gave the full dose subcutaneously. So that is the study that we’re using to say, “Look, we can probably spread this vaccine out to more people because instead of one dose going to one person, you can use that one dose and give it to five people, that we can actually vaccinate more people.” So, the reality is this was one study. It was only in people who are ages 18 and over. And we don’t really know if people who are immunocompromised are going to still get a good immune response. So I still think there are still questions, but this is definitely in an emergency and in a time of scarcity, like one way to be able to give this vaccine that’s so urgently needed to more people.

Now, if you look at the CDC guidelines, they do restrict this to people 18 years of age and older. I mean, talking about giving it intradermally. If someone has a history of keloid, so they have excessive scarring, they do say don’t give those individuals intradermal. They should get Sub-Q, and that’s to avoid, obviously, any keloid formation. I think we’ll see, as time goes on, they’ll be investigating what the immune response is alike. But really, I think if we want to give this vaccine to as many people as possible, this is one method that might work.

Imara: Mm-hmm. I think the good news is, on this particular front reports from the CDC and elsewhere, that there should be many, many, many more doses available by the end of the year to help alleviate this scarcity, as you put it, but many people can’t wait, you know, for-for four or five months, because we’ve seen how quickly the disease has progressed in that time. And that leads me to my next question, which is working in marginalized communities, and trans, and Black and Brown communities, and queer communities. For decades, after having just come through COVID, after kind of the exponential rise in monkeypox cases over the summer, I’m just wondering, from your own personal standpoint of all that experience and everything that we have been through, when you look out at what your greatest kind of frustration is from everything that you’ve learned from your career and everything we’ve learned over the last three years, what is that?

Dr. Radix: Oh. [chuckles] This is-is a tough one. I mean, I want to start by saying most healthcare providers are absolute exhausted. Many of us have feeling that way on the frontlines and doing what we can, but just the infrastructure around us is failing our communities as soon as monkeypox arrived in the United States. And we didn’t even need to wait, like we knew. When we saw it in Europe, we knew it was going to be here in a minute. Like ho– Start with the response right away. I worry that we received a lot of mixed messages around it. A lot of the same mistakes keep happening. And it’s really frustrating.

And I’ll just give you one example when monkeypox kind of became a reality. We were filling out forms from the CDC to provide treatment that had two boxes, male and female. And the first thing that we said was, “What does this even mean?” You know, how can we even track how this is impacting people in our communities who do not identify this way? We saw the same thing with COVID. So why do we have another outbreak and we’re seeing the same thing again. You know, in fact, we’ve seen 11 people, who identify as trans or non-binary, receiving treatment at Callen-Lorde at a time when you couldn’t even document that they were folks with trans experience.

So again, it seems that the great, uh, public health world doesn’t care about us if they’re not even interested in tracking who’s being impacted, who’s receiving vaccinations, and who’s receiving treatment. You know, I’m glad to say that that’s all being remedied now. But it took several months of advocacy to make that change and we didn’t need to wait. Like that should have been available at the very beginning. We know that there are going to be disparities. But sometimes, I wonder if by not counting, people pretend that the disparities don’t exist, but we know they do. You need to do that. You need to check. You need to ensure that people have access. When the vaccines first became available, they were for men who have sex with men. We know that trans men were able to access vaccines. Transgender women weren’t actually listed as a community who should access. And of course, now, that’s being corrected. But again, like why did we need to wait? So that’s been hot. That’s lengthy. That was a lengthy answer

Imara: No, it was a great answer. And lastly, what… When you look out, that gives you hope about the way that trans people and trans communities are responding because you said that this intersection of working directly with community and people who are self-organizing around monkeypox and kind of the formalized research education component within the largest provider of trans healthcare in the U.S. So in that space, when you look out and you say, “Okay. This is what gives me hope about the way that we can, as a community, mobilize in response.” What is that?

Dr. Radix: Yeah, but I think it’s exactly that. I mean, the community did mobilize. People have been everywhere on Twitter, Tiktok, Instagram. People have been educating within our community, but educating friends and partners about this. We’ve seen a huge drop in the number of new cases of monkeypox. If you look at the graph, I mean it was, it was steep up, you know, leveled off, and now, it’s down. That’ll happened within our communities before the public health started talking to us about it. So I think the community can take a lot of credit for the drop in cases.

Imara: Yeah, I think that’s right. I mean, I know that for me, for example, there have been members of our community who have said, “Hey. I partnered with Callen-Lorde. I partnered with another local community network. They’re telling me that I have the ability to sign up X number of people. Contact me if you’d need that.” And I think that increasing the access touch points for people who may be outside of the healthcare community is one of the remedies of this. And that’s what people, partnering with places like Callen-Lorde, had been able to do. And so, I, I do think that that’s been a bright spot in-in all of this.

Well, Asa, thank you so much for joining us. Your cup is full and your plate is full. So the fact that you’ve taken the time to explain this in such a compelling and accessible way, I think, is really helpful for us and generous of you. And just continued thanks and gratitude for everything that you do.

Dr. Radix: Well, thank you for everything that you are doing. And I know this will have a wide reach and will educate people further, so thanks again.

Imara: Thank you. That was Dr. Asa Radix with Callen-Lorde Community Health in New York City.

[background music]

Imara: I’m now joined by Dr. Elle Let. She’s a Black trans woman, statistician, epidemiologist and a physician-in-training. She spoken about the need to destigmatize public health responses in the fight against monkeypox. Dr. Lett is also a force pushing for better healthcare and data in the medical field. Her work focuses on intersectional approaches to transgender health, and is informed by the principles of Black feminism. Dr. Lett’s research also touches on the health impacts of state-sanctioned violence and systemic racism. She received her PhD in Epidemiology from the University of Pennsylvania, as well as a Master’s in Biostatistics from Duke. She also holds a Master’s in Statistics from the Wharton School at the University of Pennsylvania and a Bachelor’s in Biology from Harvard. Dr. Lett, thank you so much for joining me today.

Dr. Lett: Day. Thank you so much for having me. It’s such a treat to talk with you today.

Imara: Well, before we get started, I just have one quick question. I am just wondering if you have learned how to cut lace.

Dr. Lett: [inaudible] [laughs] It is on the list of things listed. When I learn how to cut lace, it’s over for you all, and it’s academia. Okay? I’m goin g to hit the wrong way.

Imara: Okay. So we are talking about lace front wigs for [inaudible] audience who, of course, would not know about such things. And Dr. Lett posted a Tiktok about learning how to cut lace and how when she did, it was going to be over for the world. So…

Dr. Lett: Well, my neighbor does. My neighbor made me a custom wig and is going to teach them how to cut lace. But until then, I’ll be paying for her service.

Imara: Listen, listen. Move money around. So from that light note, let’s go to a much more difficult one, which is where we are in monkeypox, specifically in our community. And I am wondering if you can share with us your thoughts about why you believe this epidemic landed so hard and so fast in the trans community, but specifically, the Black trans community. What, from everything that you’ve studied for nearly a decade, informs why we should know how that came to be?

Dr. Lett: This is something that goes back to just growing up Black. Well, you know how some things can be known but not necessarily proven in the artificial scientific sort of way. What I mean is that monkeypox seems a cute shock to an unjust system. It’s something new that is being overlaid on top of a system that is, as far as health goes, it is fundamentally inequitable from marginalized communities, trans or black, or black and trans. And what I mean by this is known is that like anyone in our communities can tell us that like when new things happened, the marginalized people get the short end of the stick. And we just rolled off of a pandemic and are still in the midst of a pandemic, where we saw these same sort of inequities, and so it was wholly predictable that people from our community would be hit, would be impacted because that is how things have always been.

Imara: One of the things that I found really interesting in a conversation with Dr. Asa Radix at Callen-Lorde was how in the beginning of this epidemic, when the government was sending out forms for gender, that they didn’t have trans on the forms. So that they’re actually, for the first several months of this critical epidemic over the summer, there wasn’t actually a way to track trans people and the way that this epidemic was impacting and moving in trans communities. And how does that fit with what you know about statistics and epidemiology through an intersectional lens?

Dr. Lett: That’s such a good question. I was just giving a talk at BU, and there is this narrative that we really only need to think about gay men. And there is no question that gay men are men who have sex with men and bisexual men are disproportionately impacted. But the people who say that we all need to think about there are assuming that the data we have captures the truth, but it does not because trans people are routinely erased in data collection methods — from national surveys, to the census, to even this rollout. And so people who are saying we need to center the gays only are people who are forgetting that the data you’re basing that assumption on are racist at trans people. And so, I do not believe the dashboard that show small counts of trans people affected because, one, they didn’t include trans people in their forms initially and, two, trans people have lower healthcare access than the rest of the LGBT community. And so the data is only as good as people who have access to the collection mechanisms, and that doesn’t include us, particularly Black trans people.

Imara: So how are we able to figure out a way to respond as a community in effective ways without knowing exactly what we’re dealing with? You’ve been a part of a network of grassroots efforts to respond, to get information out, to advise people in vaccinations and a whole host of other things. Is that the wave for us to go? I guess, my question is should we even be relying on public health as a remedy or an answer for trans communities at this point to serious outbreaks and other challenges that we face?

Dr. Lett: Uh, this is where I make my plug for, uh, multi-sector interventions and cross movement coalition building because the reality is we have to be doing all of those things. We can’t rely on a system that has failed to serve us in general to immediately change overnight. And so, I’m involved with the respond in my MPX study, which is a study that’s primarily based in New York, and they are collecting the data that shouldn’t have been collected. And so, we have to do those local grassroots kind of taking care of our own. We have to get out the stuff about how to have safer sex because people should still be able to obtain pleasure in this sort of environment and still have the full expression of their humanity.

We have to get information out about where vaccination sites are and what, under this new and frankly untested dosing regimen, what a successful vaccine injection looks like. For instance, if you don’t have a bubble with after the injection and actually isn’t successful, and we have to share that information through our networks. At the same time, we need our allies across other movements and then across in other sectors to help put pressure on these agencies to do better. I believe that change is possible. It just requires effort, and so we have to hold them accountable. So I’m a fan of naming and shaming, talking to these public health institutions, being public about how they’re not serving us, but we can’t wait for them to catch up. We have to push them to catch up while also serving ourselves.

Imara: What are the major barriers to them serving us that we need to change? I mean, you are unique for our community in so many ways, but you shouldn’t be, right? You should live in a world where there are thousands and thousands of you, where we have people who are Black and trans and who are epidemiologists and statisticians, and who are trained in public health, and who are a doctor’s, right? There should be many, many more of you. And so, I’m wondering, from your perspective which is unique, like what do we need to change about this medical establishment, um, so that it can better serve us?

Dr. Lett: So I think some of those things are happening. I’m a cynic, but I think some of those things are happening and it’s painfully slow and really challenging. Sometimes, I get emotional when I think about it. But there are more trans people coming into the world of medicine and public health. I mentor Black trans folks in their journey to make it a little bit easier for them. And so, our community has, against unfair odd, continue to push these doors and create more space for us. And I think as we rise to power, I think those changes will necessarily have to happen because we think differently, we work differently, we care differently. And when we’re in control, we will be in a more inclusive medical system. I have to believe that.

But in tandem to that, we have to mobilize across the avenues of legal work and things like that to force better treatment. Putting on my public health kind of nerd hat just for a second, data collection around trans people expands and contracts based on the administration in charge. And so, under Obama, we had trans people included in more data sources, some of the main sort of public health databases we use to study populations. And then, under Trump, that moved back. And so, we got to keep pushing those political leverage because once that measured, it can’t be changed. So we have to keep pushing that advocacy button through different policy leverage. Like I would love to see a trans question on the senses. Like once that happens, a lot of floodgates can open around public health.

Imara: This is going to be a tough question.

Dr. Lett: I’m here for it.

Imara: One of the things that keep sticking with me is the dismissal in media about the impact of monkeypox on people and on bodies.

Dr. Lett: Hmm.

Imara: I also have this-this, uh, question for Dr. Radix. But also, I want to pose it to you through a slightly different door, given where you sit. I’ve heard from so many different places, where when someone says, “Well, what’s the impact of monkeypox?” That first person says, “Well, this isn’t like COVID and you’re not going to die.” And there’s a dismissal that if it doesn’t kill you, then it’s not really a big deal.

Dr. Lett: Mm-hmm.

Imara: There’s a sneaking suspicion that I have that a part of that dismissal is because it’s believed to be localized in certain marginalized communities. And that there is a dismissal of pain of Black people. There’s a dismissal of pain of trans people. We know that there’s a dismissal of pain of gay men, which we s– have seen for decades through the AIDS crisis. And I was like, if this wasn’t a different population, would we be dismissal of the fact that people experience pain that they’ve never experienced before, that people can experience brain infections from this, be immunocompromised after this disease? Like very serious things, but when I turn on CNN or when I open the New York Times, there’s just this dismissal of the seriousness.

Dr. Lett: Whoo. Um, you opened up a big can there, and I’m happy to dive in. So with COVID… Honestly, I see all this stuff on the same continuum and it’s just that we care less about the marginalized as a society. We are in this capitalist sort of framework that we’ll sacrifice people on the margins if we can maintain the status quo. And then COVID that looked similar, where a lot of people who were more likely to die, had multiple comorbidities or were disabled, and so we thought about, “Oh, well, it’s okay for them to die because they were sick already.” That’s the implicit narrative of us going back to things as normal. And then you point out another thing that death isn’t the be-all-end-all for anyone. Like COVID was so disabling. We have a huge population of people who are going to be disabled. And then translate that to monkeypox. You talked about all this other ways in which we are going to create a disabled sort of underclass of folks because of monkeypox. And because they’re concentrated in this silo of folks aren’t valued by society in general — trans people, gay people, Black trans people — we-we’re okay accepting that.

And I want to point out that skin lesions and scarring is disfiguring. That is a awful experience to have permanent scarring. That cuts into your mental health, especially with trans people who are dealing with dysphoria and have much higher dysmorphia rates as well. Like a disease that scars you is also bad for those reasons, too. It’s because the people who are sort of deciding what we prioritize aren’t members of the most impacted groups. If monkeypox was sweeping through everyone, we would see a totally different response. So you hit it right on the head. The degree to which we respond as a society is directly related to how much we care about the people disproportionately impacted. And I’m sad to say that’s not nearly enough.

Imara: From a purely statistical, epidemiological lens, like rigorous, what is the folly? What is the silliness? What is the ridiculousness believing that exponential outbreaks like we’ve seen with monkeypox, where we went from a couple hundred in May to almost 20,000 that we’ve been able to record now, to think that something that grows that rapidly is going to stay amongst one population, that it’s not going to go anywhere? Because that’s also the thing that we constantly also hear, is that, “Well, it’s amongst this group of people, and so, yes, you know, y’all don’t really have to worry about it.”

Dr. Lett: Yeah, I think people don’t understand how quickly, uh, things can spread from very small seeds. As soon as they saw this explosion on gay people, it became easy to keep everyone calm by saying it’s a gay disease. And even if the majority of people are gay or bisexual men who have sex with men, you don’t need very many people outside of that community to have it for it to speed other outbreaks. And the reality is we don’t actually know a lot about transmission. Like we know that it happens between skin to skin contact. We’ve have some data that it is present in semen and saliva, but we don’t actually know if that’s the transmission. We know that abrasions, which happened during anal sex… And I’m purposely being explicit because I think without destigmatize talking about this.

Imara: You should.

Dr. Lett: Like it’s possible that the reason why we’re seeing it in the gay men is because it’s skin-to-skin contact, mucosal contact, and then abrasions from anal sex is like the perfect zeitgeist for transmission. But it can also be that it’s just any type of prolonged skin-to-skin contact and gay men just fuck a lot. And like so they have just lots of skin-to-skin contact, and so that’s why that population just reports to be impacted. The reality is we just don’t know yet. There is a story of this woman who- in Georgia, who works at a gas station who wasn’t sexually active, and she contracted it. And that story is not isolated. The media is doing, I think, a disservice to us by not highlighting the people who don’t fall under the way we’re stereotyping the disease as being gay. And so I’m worried that we’re going to end up in a situation where monkeypox is sort of present in a lot of different packets because we didn’t adequately explain risk. And so, that it’ll stay endemic and people will continue to spread it.

And so, I think that’s the main risk. One thing that’s good is the type of virus. It is a DNA virus. It doesn’t mutate as quickly, and so that’s a benefit. But we’re still in the area conjecture. We don’t know how well these vaccines are going to work. Something that really bothers me is that this dosing regimen of splitting one vial into five is actually not really evidence-based. So we have no idea if that’s going to even work. There’s a lot of open questions. And so I think people are trying to minimize the concern to like not put people on guard in the same way they were with COVID when we really should be airing towards caution. If people are overly cautious and too paranoid, that’s a future that I would be more comfortable with. Until we have better data than being not sufficiently cautious, and then have the monkeypox with us forever.

Imara: Right. And I think that’s the risk, is that this wasn’t an endemic virus, but because we’ve been slow across the board, it’s becoming that way, and dismissing it as being in certain communities.

Dr. Lett: And then address the thing where people are saying it might be endemic to the queer community. That makes no sense at all.

Imara: No.

Dr. Lett: Like if I’m sitting next to you, it’s not endemic for my group of five queers and then not endemic for y’all. If it becomes endemic, it becomes endemic for all of us.

Imara: On this point about it not staying contained, what does it say to you that we now apparently have these smaller outbreaks amongst kids? You know, where Princeton and Dallas County, there’s a report that there’s several children there that are starting to get it, and more and more kids are starting to get monkeypox. What does that say to you about being endemic and it not staying in a group?

Dr. Lett: Well, what it says to me is that we may have overplayed our hand and saying it’s a gay disease. I’m certain we did that, but the degree to which we overplayed it is becoming more and more pronounced. And I just want to emphasize that a lot of the messaging has been presented with certainty when it’s really all open questions. And so, like I was saying where it could just be a lot of skin-to-skin contact, kids hang out all the time and have very physical interactions with each other. And so, it makes sense to me that we have kids’ transmission to and between children. If you think about the late people, even pe-people who aren’t necessarily as informed as you or I, they could have it fixed in their mind that they are not at all impacted or at risk for monkeypox.

And so, they don’t mobilize a local officials to advocate for more vaccination, which would get back to the federal government to produce or obtain more vaccines. And then all of a sudden, they find out three kids in their neighborhood have it, and now, they start doing that, but it’s too late. And this is something that characterizes our entire response to all these recent disease. It’s that our response, because we haven’t been willing to invest, has been reactive instead of proactive. So if we were being proactive, we would have been prepared. I cannot state how much of a tragedy it is the on the heels of a global pandemic, we did not have a federal infrastructure to quickly mobilize vaccines to local communities. Like that’s ridiculous.

Imara: Right. And the vaccines were, are available in the United States had already contracted with vaccine makers in the US and abroad, so there are a lot of questions to be answered. On this point though, I’m wondering if it’s tied to this idea that you’re discussing about the fact that dividing the vials by five, if it’s related to the minimization because if we were in an instance where we need to suddenly vaccinate many more people including younger children, then we don’t have that. We’re, right now, taking one vial and dividing it by five and we can barely cover the demand. Actually, we cannot cover the demand that exist… [crosstalk]

Dr. Lett: Absolutely.

Imara: … right now. So if the government were to say, “Oh, goodness. You know, we kind of need to do something about kids.”, we can. And so I’m wondering to the degree to which trying to localize the impact is related to the fact that we actually don’t have enough vaccine if we have to vaccinate more people. We can’t even vaccinate the people that we need right now.

Dr. Lett: I think that is related, and I think I would almost take it a dir-different direction. We could have imagined a response where the US was like, “We don’t have enough vaccines. We’re working on producing more and obtaining more. In the interim, everyone we need you all to wiped out all your surfaces, have smaller sex networks, social distance, less physical contact outside of your family, just until we are able to mobilize enough vaccines.” We could have imagined that, but because of how we politicize that, that’s not favorable for people’s chances of re-election. That’s not favorable for people with their constituents. And so, the alternative is to just minimize and say, “This isn’t a problem for you. You aren’t gay. You aren’t queer. This isn’t your problem, so go on about your life. Continue to support me while we’ll do our best with these people over here that you already see as undesirable.”

Imara: Yeah, it’s the, the collapse of the public and public health. Right? Like it is– [laughs]

Dr. Lett: Public health is not about individual choices. It’s not about individual actions. It’s about a collective community-driven response to minimize the injury to you and your neighbors, and we just completely gave up on that as a country.

Imara: That’s right. And we see places, that did respond that way, have had better outcomes. Right? Where there still is a sense that there is solidarity and a collective response, um, that isn’t politicized. They fared better. They haven’t fared as, as bad as the United States. What’s interesting is that when you look at places that don’t have the vaccine, particularly in sub-Saharan Africa, but do have very solid public health responses and that engage in public health, they’ve largely been able to not have massive outbreaks of COVID, for example. Which means that we could have had that response plus more given the technology that we have. That what we’re seeing on monkeypox and what we see during COVID, that was totally unnecessary because we have examples of countries that didn’t have any of that who did better just because they practice better public health.

Dr. Lett: And now, take even one step further on so-called developed countries. If we had coordinated global response, where we pay people to stay home and shut down for 30 days, we would not have COVID anymore. But I suspect it wouldn’t exist. Maybe longer, maybe would have been six weeks, whatever the duration would have been necessary, we could have made it so that COVID was not endemic as some say it is, and we wouldn’t be dealing with it. And what you talked about sub-Saharan Africa, they’ve been dealing with infectious issues like this, including monkeypox but also either a, the HIV epidemic that is still ravaging there. And ravaging, I take that word back because that stigmatizes. They have had a more severe burden of HIV and therefore, have developed public health resources to mitigate the further transmission of it and have a more collective engagement with public health than we do in so-called developed nations like the US.

Imara: Well, we’ve kind of gone through what monkeypox is showing us about the ways in which public health is failing our community, failing trans people, failing Black trans people, failing queer people, um, and the way that that connects with our political moment. And of course, given the politicization of career bodies right now and trans bodies, all of that is even more amplified, right? But I am wondering what, for you, where you’ve spent, you know, a massive part of your life and a way reimagining…

Dr. Lett: Mm-hmm.

Imara: …what a functioning healthcare system looks like for us. And I wanted to end on that note. If you can describe for us what your vision is for a healthcare system that works for all of us and that inspires you to keep going and learning and growing despite all of the challenges, personal, professional, societal, that we’ve talked about today?

Dr. Lett: I refuse to accept the status quo because I have faith in the infinite creativity of humanity. We have cars. We have airplanes. We can reimagine this world and this healthcare system in the way that it is equitable. What I want is to be out of a job. I study systems of inequity that will impact health. I want to lose that job. I want to just be able to practice medicine and treat people. What I imagined it being, I want to see every clinician to be competent in providing excellent gender-affirming care for trans people. I want us to have a reflexive medical practitioner workforce because I don’t think biases just disappeared, but where we are constantly interrogating how our biases may impact the quality of medicine we have, so that we’re not under medicating Black patients who have sickle cell because we have false understandings of like pain and think Black people have thicker skin and don’t experience pain. And so, I will, I imagine a place where those biases are reckoned with instead of hidden from and that we work through them. I don’t imagine it being easy, but I imagine it being transparent and difficult. But through that tension, we reach a side that is closer to equity.

Imara: Well, I believe that with your creativity and your vision that you can absolutely take us a long way to getting there. You may not be able to put yourself out of a job, but you may get awfully close. I just want to thank you so much for your passion, and your intelligence, and your dedication, and your continuing to create space for us where there’s not a light. We need you. And I know that everyone will, have been so grateful to hear everything that you’ve said today.

Dr. Lett: Thank you for having me. As someone who has followed the work of TransLash, this is quite a dream come true, and I really appreciate it.

Imara: Thank you. Thank you so much. I am confident that this will not be our last conversation on this podcast. That was Dr. Lett who is a — there’s a long list — statistician, epidemiologist, and physician-in-training.

Imara: Thank you for joining me on the TransLash Podcast. Now, listen all the way through to the end of the show for something extra. Special thanks though, first, to Guess What’s Vegan for giving us a five star review at Apple Podcast. Guess What’s Vegan says, “This podcast is amazing. Love the guest, Imara’s brilliance, and the wide range of important trans issues that get covered. Love it and grateful that it exists.” Well, Guess What’s Vegan, we’re so happy that you exist and that you took the time to rate and review us. We want to encourage you to do the same because, because we’re getting more shine. We got these trolls that are on there, just giving us bad ratings for no reason, just to bring us down in the world, y’all know how that works. So make sure that you go, and rate and review us, and tell the world what you really think of the TransLash Podcast because y’all are the real lister’s. And if you do so, you can be like Guess What’s Vegan, and if you leave that review, we’ll be sure to read it in our podcast.

The TransLash Podcast is produced by TransLash media. The TransLash team includes Oliver-Ash Kleine and Aubrey Calloway. Our intern is Mirana Munson-Burke. Xander Adams is a contributing producer to the show and our sound engineer. Digital strategy is handled by Daniela Capistrano. The music you heard was composed by Ben Draghi and also courtesy of ZZK records. TransLash Podcast is made possible by the support of foundations and listeners like you.

Imara: What I am looking forward to is accepting an award from the National Association of Gay and Lesbian Journalist for the Anti-trans Hate Machine Podcast. In fact, so many of our team members are going to go and be there. It’ll be the first time that we’ve been able to be together in many ways for three years, and we’re just super excited. And that award will be given out just days after this podcast drops, so super excited about that. I’m… And I’m excited about the fact that podcast continues to have an impact on the wider world. I personally don’t believe that there is any greater topic than, actually, this intersection and this growing link between White supremacy and Christian nationalism. Just imagine the groups sacking the capital on January 6th and then all of them working with that same energy and vigor against the rights of trans people, which happens in ways that are as obvious as that day and not as obvious. And so, the fact that we continue to be awarded for that is something that makes me deeply proud of the work and deeply proud of the people that, that I work with because we spend and spent countless hours on it. And we’ll be dropping a second season of The Anti-trans Hate Machine as well, so this helps give us all a shot in the arm to complete that important work.

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