This Podcast Will Kill You - Ep 57 Herpes: Stop the STIgma

Episode Date: September 1, 2020

The harm caused by herpes simplex viruses (HSV) 1 & 2 often arises not from the pathology of the viruses themselves but rather from the stigma and shame associated with a positive diagnosis. In th...is episode, we attempt to lay a clear foundation for understanding not only how these viruses work but also what occurred to change the perception of them from “innocuous infection” to “dreaded disease”. Starting us off with his firsthand account is the incredible Courtney Brame, founder and host of Something Positive for Positive People, a non-profit organization and podcast that aims to provide community support, healing resources, and educational discussions around positive HSV and other STI diagnoses as well as larger issues in sexuality and physical and mental health. We then dive into the meat of the episode, tackling such questions as “how do these viruses hide out in your body?”, “what kind of treatment is available?”, “where did these viruses even come from?” and “why is there such a huge amount of stigma and what can we do about it?”. To help us address this last question is our other fantastic guest, Dr. Ina Park, Associate Professor, University of California San Francisco School of Medicine and Medical Consultant, Division of STD Prevention, Centers for Disease Control and Prevention. We chat with Dr. Park about her new book, Strange Bedfellows, when to have “the talk” with your kids, and how we as individuals can break down some of the shame surrounding a positive STI diagnosis.To learn more about Something Positive for Positive People, head to the website spfpp.org or check out the SPFPP podcast wherever you get your podcasts! You can also follow Courtney on Instagram: @honmychest.And don’t forget to pre-order Dr. Ina Park’s upcoming book Strange Bedfellows: Adventures in the Science, History, and Surprising Secrets of STDs, expected February 2021. You can find out more about Dr. Park and her work on her website or by following her on Twitter: @InaParkMD or Facebook: Ina Park. See omnystudio.com/listener for privacy information.

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Starting point is 00:01:42 My name is Courtney Brain. I am the founder, executive director of the nonprofit organization, Something Positive for Positive People. That also has a podcast by the same name, which I host. On this podcast, I interview people who are living with
Starting point is 00:01:59 primarily herpes about their experiences from their diagnosis to dating to disclosure. For me, I was diagnosed with genital HSV-2. I was living with my grandmother at the time. I was just out of college, probably 23, I believe. I'm 31 now, so yeah, it's been about eight years. At age 23, I wake up one morning, and I was under the covers. I got out of the covers, and I was like, whoa, I'm really cold.
Starting point is 00:02:27 Whoa, I'm really sweaty at the same time. And I get up to go to the restroom for the first. time and I go to urinate and I look down at my genitals and I scream and obscenity. Let's say that. And my grandmother comes to the door. My grandmother's a nurse. I need to be sure to include that part here. She goes, you okay, man?
Starting point is 00:02:51 I was like, we need to go to the emergency room or somewhere right now. And my mom just happened to be over this morning. And so my mom drives me to an urgent care facility and we're in the waiting room. I'm not sure what's going on at this point. Having an STD never caused my mind. So I get in there and the doctor looks at me and he goes, all right, that looks like herpes, gives me the swab test. He gives me treatment for, I believe, gonorrhea and chlamydia.
Starting point is 00:03:23 And I get tested for the other common STIs. at that point and sends me on my way. I get a pamphlet that tells me a little bit about herpes and the different statistics. And I get home and I immediately start messaging, texting, Facebook messaging, my most recent partners and just out of concern that I may have given it to them. So my immediate response was, oh, man, who else did I give this to? And it was really weird how I worded each message. because it was just, hey, do you have herpes?
Starting point is 00:03:59 You wouldn't happen to have herpes now, would you? And everyone said no. And so, you know, you can't really dwell on whether or not, you know, where you got it from or how you got it or how long you've had it or anything like that. So I just kind of had to move forward accordingly with taking responsibility for myself. The next five years are a huge blur for me because I kind of just stay in my relationships with the women that I disclosed too early. Dating was a trip over these five years going through the process of having to, first
Starting point is 00:04:35 off, understand the virus and then have to communicate that to another person because I already had my thoughts in my mind that, okay, no one wants an STD, nobody wants herpes, and nobody wants to put themselves at risk for herpes. This is where we begin the origin story of something positive for positive. the people. I begin dating again. And then my dating, you know, I just kind of got tired of keeping this thing to myself because it's really hard to talk about. And it was kind of what led to my decision making for dating. It wasn't, are we compatible? It was more so, do you accept the fact that I have herpes? Okay, great. I stumbled across a dating website for people who are living with herpes.
Starting point is 00:05:25 And I get on that dating site and herpes isn't on my mind because everyone here has it or everyone here knows I have it. Right. And so I get active in the chat rooms. I'm meeting women. I'm dating. And life is great. It's like, where was this at for the last five years? Right.
Starting point is 00:05:46 And in these communities, I find that people are saying on online forums and blogs that this herpes diagnosis is the worst thing that's ever happened to them. No one's going to love them. They're never going to find a partner and that they want to kill themselves. And that to me, the first couple of times I saw it, it wasn't really a big deal. It was just kind of like, huh, that's weird. And then after someone I had become friends with who was in a relationship with a partner who was accepting, she told me that at some point she had suicide ideation.
Starting point is 00:06:23 And so when she said it, I think I started to notice it a little bit more, a lot more. And I felt like I had to do something. And so I go to one of my communities and I just make a post. And the post was requesting people to anonymously share their experience and allow me to record it and then just send it to these people who were expressing suicide ideation. And so I got one person to do it. And her perspective was one, it was the first episode of something positive for positive people. And over the conversation, we got sad, we got angry, we cried a little bit, we laughed a little bit.
Starting point is 00:07:05 And by the end of it, there was just like this neutrality there, a sense of relief more than anything. And I think that me witnessing someone who went from holding this inside to finally having shared this experience, for the first time, it really showed me that there's something to be said for the power of just expressing these experiences that we have. So after I share this recording in the group, more people wanted to get involved. So it went from that one interview to four to eight to 16. And so many different people shared so many different experiences. There are no two experiences that are the same on the Something Positive for Positive People podcast episode archive, people expect to hear from people who have gotten herpes by being promiscuous
Starting point is 00:08:01 and having multiple sex partners and being reckless and not taking any precautions. And all of those things that people by default think of stigma and what people with SEIs look like are completely challenging. by so many different experiences of everyday people who are living their life that you would never hear from simply for the fact that they're living their life. These are people who have gone on to have families. They have businesses. These are models.
Starting point is 00:08:30 These are celebrities. These are athletes, bodybuilders, people who have absolutely no reason to come up and say, hey, everybody, I have herpes and I don't fall under the stereotypes of the stigma. These are the people who are sharing their stories from their diagnosis to dating, to disclosure to the point where they are now. So I often tell people something positive or positive people is not necessarily a herpes resource that just happens to be like a secondary effect from this actually being at its core, a suicide prevention resource.
Starting point is 00:09:05 It's becoming clear that there is a direct connection between this and STI diagnosis as something that triggers mental health issues. As a nonprofit organization, the business function of something positive for positive people is to not only connect people with community resources, but also a therapist in the event that they are struggling with stigma or struggling with their diagnosis. We're connecting them with a sex positive therapist who is capable of talking them through that. So one of the things that I want to do is just put people in position to where they don't
Starting point is 00:09:42 necessarily feel a need to come out and combat stigma. or to, like, openly make a Facebook status that they have herpes. Like, if that's what people want to do, great. But they don't have to do that. This is essentially a safe space for people to understand how they want to navigate the stigma. I have no intention of destroying stigma, eradicating it, or whatever violent word you want to insert to stigma. My purpose is to just give people the resources to navigate the stigma.
Starting point is 00:10:14 It's not going anywhere anytime soon. So until we're all on the same page about what this is going to look like for us and we get the truth out there, consistent truth about this virus, then I think that we can begin to focus more so on the important stuff, which is how we process it mentally and emotionally and how we go about communicating to the people who need to know about it and how we deal with it ourselves. You just heard from the amazing Courtney Brame, who is the creator and host and editor and producer and everything of the nonprofit organization and podcast Something Positive for Positive People. You can find SPFPP wherever you get your podcasts and also on SPFPP.org or something positive for positive people.org. Hi, I'm Erin Welsh. And I'm Aaron Almond Updike. And this is This Podcast Will Kill You.
Starting point is 00:11:54 And today, you've probably guessed, we're talking about herpes. Yes, HSV-1 and HSV-2. That's herpes simplex virus, one and two. It's going to be a really great episode, in part because in addition to our incredible guest, Courtney, we also had the wonderful opportunity to chat with Dr. Ina Park, who is associate professor at UC San Francisco School of Medicine, as well as medical consultant in the Division of STD Prevention at the CDC. And we chatted with her about her upcoming book titled Strange Bedfellows. It's an incredible book, and you guys are going to love this interview. So, Aaron,
Starting point is 00:12:37 should we jump to important business matters? Oh, yes, it is. What time? Oh, it's quarantine time. It is. What are we drinking this week? This week we're drinking the Simplex sour. Ooh, yum. And what is in the Simplex sour? Well, Erin, as you can probably describe better than me, it's a bourbon slush, right? Yeah, it's a bourbon slush. It's a Kentucky. It's a very Kentucky drink. It's so delicious. I feel like it's great. The last sort of throws of summer here as we wave goodbye to the beautiful sun and greenery that's been all around me here in Chicago. Anyway, so what's in a bourbon slush? It is essentially black tea, sugar, frozen lemonade.
Starting point is 00:13:24 frozen orange juice, bourbon, ginger ale. I will warn you that it does take a bit of prep in that you make a big batch of it and you have to freeze it sometimes overnight. But it's totally worth it because it's delicious. And we will post the full recipe for that quarantini as well as our non-alcoholic placebo-rita on our website. This podcast will kill you.com and all of our social media channels. Awesome. All right. Well, should we dive right into the episode? Let's dive in right after this break. Dinner shows up every night, whether you're prepared for it or not. And with Blue Apron, you won't need to panic order takeout again.
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Starting point is 00:16:43 It'll cause so much harm at every single level of the British establishment of this is wrong. Listen to Doubt, the case of Lucy Lettby. Let Be on the IHeartRadio app, Apple Podcasts, or wherever you get your podcasts. So, HSV, herpes, simplex, virus. Easy enough, we can learn a lot about this disease just from the name. We're dealing with the virus. Specifically, a DNA virus in the family herpes viridae. That's right.
Starting point is 00:17:37 This is a massive family of viruses, not just the two that we're talking about. today. People are probably very familiar with a whole bunch of these herpes viruses, okay, because they're very famous and many of them cause disease in humans, not just HSV-1 and HSV-2. Do you know some of them, Erin? You probably do. Well, there's herpes zoster. Yep, that causes chickenpox and shingles. Mm-hmm. Is CMV one? Yeah, it is. Cidomagulovirus is a herpes virus. EBV? Yeah, Epstein-Barr, which causes mononucleosis, is also a herpes virus. That's all that I have. Great job. Erin, that was very impressive. Also, Kaposi's sarcoma is caused by a herpes virus, H-HV-8. And then roseola, or sixth disease, which is common in small children,
Starting point is 00:18:32 can be caused by H-HV-6 or sometimes seven. And then there are also hundreds of other herpes viruses, that cause disease in other animals, other mammals, but also birds, fish, mollusks, amphibians, reptiles, everybody's got herpes viruses. Oh my gosh, Erin, I think I have that same exact sentence in my notes. That's awesome. Because I think I even put in mollusks and I was like, whoa. Because when I saw that, I was like, I'm sorry, mollusks, really? I know, I know.
Starting point is 00:19:05 A little clams with herpes. I love it. So yeah, this is a very big family of viruses. But today we are focusing just on herpes simplex, which is HSV-1 and HSV-2. So let's get specific on HSV. Transmission of HSV is pretty straightforward across the board. HSV-1 and HSV-2 are transmitted the same way. It's from mucous membrane to mucus membrane or from skin to skin.
Starting point is 00:19:37 Easy enough. HsV can enter through any break in the skin. You can get it really anywhere, literally anywhere. Yeah. So in general, the incubation period, so the time from when you first get infected to when you show symptoms, is about four days, but it can range from like as little as two days to 12 days. I even saw up to a month in some cases. But one of the most important things about HSV infections is that a large proportion of them are actually completely asymptomatic. Right. So you can get infected with HSV-1 or HSV-2 and never show any symptoms of it. And that doesn't necessarily mean that you aren't infectious to other people, because you can still be shunning virus even if you never knew that you were infected. Right. So let's go through the symptoms in a primary infection.
Starting point is 00:20:35 Most often, if you have any symptoms, about 40% of the time, you'll also have systemic symptoms. So you'll have fever, you'll have headache, you'll have body aches, those kind of general, like, viral illness type symptoms. The two most common places to get infected with HSV1 and 2 are either the mouth or the genitals. So if it's a genital infection, you can have kind of like UTI type symptoms if the urethra is involved, so urethritis infection or inflammation of the urethra. Or you can have like vaginal irritation if you have cervicitis, so inflammation of the cervix. And if you get an oral infection, then you can also get like pharyngitis type symptoms, so sore throat and things like that.
Starting point is 00:21:26 And then it's also really common to have some lymph node swelling. So if it's an oral infection, your lymph nodes in your neck might get swollen and tender. If it's a genital infection, you have lymph nodes kind of in your groin that might get swollen and tender. And then, of course, the herpes sores that everyone knows about. Okay. So these lesions often start with an itching or burning sensation in the skin where the virus has entered. And then these lesions appear. They start out as kind of a flat red, just little. spot and then they form vesicles, so kind of like little fluid-filled blisters, and then the
Starting point is 00:22:06 vesicles will burst open and leave an open ulcer behind that will often crust over, especially if these ulcers are on skin rather than mucus membrane. So if it's around the mouth or on the shaft of the penis or on the vulva, then they will crust over, whereas if it's inside the vagina or something like that, then they just sort of heal slowly without crust. stinging over, if that makes sense. Gotcha. Yeah. Yeah. So they start out usually with this sort of itching and burning sensation, but once these lesions come, they are super, super painful. They're not, we talked in syphilis about the lesion that you get from that, which is painless. Right. But these ones are quite painful. And in a primary infection, they take a really long time to heal, too.
Starting point is 00:22:52 It's usually at least eight to 11 days, but it can be even longer. So you have these painful sores for like a long time. So one of the questions is what's actually what's actually happening here. And that will lead us into how does this virus then hide out in our bodies. Okay. So why does the virus actually cause these ulcers, these sores? When HSV enters your skin through a break in the skin or through the mucous membrane, the cells that they infect are your epidermal and dermal cells. So they don't have to travel far. Right where they enter is, where they start to infect cells and replicate. And as they do that, they cause direct damage to the cells of your dermis and epidermis.
Starting point is 00:23:36 So that's why you have those blisters, because those are actually from viral damage to the cells. Does that make sense? Okay. Yeah. But then, as they replicate and spread, they enter the axons of our sensory nerves. Mm-hmm. Right. What?
Starting point is 00:23:54 I know. It's wild. It's so wild. Oh my goodness. So they enter the axons and then they travel. The axons are essentially like the nerve projections, right? And they travel along these axons all the way back to the cell body, which is in our spinal cord. And, you know, trying to phrase this in a way that's not like, why does the virus do this? Why is it so smart? But the consequence of this like nerve association or whatever, the fact that it goes into, your nerves is that like our immune system doesn't really like to mess around with that. Yeah,
Starting point is 00:24:33 we've talked about this a lot before, but once a pathogen has made it past our blood-brain barrier, it's really hard for our immune system to do much about it. Like, we have the blood-brain barrier there to prevent things from getting in in the first place, right? And so once a virus is already there in our spinal cord, it is very hard. And HSV, like many herpes viruses, well, like all herpes viruses is also just really good at evading our immune system even when it's not inside of our nerves, right? So it has all these adaptations to just make it harder for our immune system to fight it off, essentially. Interesting. Yeah. Very interesting. And so that is how HSV can establish this latent infection, essentially, once it's in the cell bodies of our nerves.
Starting point is 00:25:22 and usually that's in the trigeminal nerves, which is one of your facial nerves, if it's an oral infection, or in the lumbosacral nerves, which is if you have a genital infection, that's where HSV tends to hang out. Once it's there, it just can hang out. And 90% of people that present with a symptomatic primary infection will have at least one recurrence within the first year after being infected. So these recurrent episodes tend to start with a prodrome. So some kind of like tingling sensation or burning sensation or sometimes even like a shooting pain that can happen anywhere from hours to a few days before a new outbreak of these vesicles. So those same kind of ulcers that you see in a primary infection. But one of the big differences is that recurrent episodes tend to be shorter
Starting point is 00:26:20 in duration. So you would only shed virus for like four days compared to 11 days in a primary infection. And there also tends to be fewer lesions. So in a primary infection, it's common to have like 16 or more lesions. Whereas in recurrent infections, you tend to have fewer, like maybe four, or five, six, something like that. Gotcha. Okay. So questions, many questions. Great. Number one is the difference between HSV-1 and HSV-2, because you said that either virus can infect like any part of your body, basically. Yeah. So how does that manifest clinically?
Starting point is 00:27:00 Great question. And then the other question is sort of about like if you were to plot viral shedding, you know, like on with time on the X axis and viral load on the Y axis, what might that look like over like a number of years you know, starting with the primary infection and then on. Excellent questions. Let's address them both. Okay. So HSV-1 versus HSV-2. Commonly, we say HSV-1 causes oral herpes. H-Sv-2 causes genital herpes, right? That's an easy way to be like, boom, one and done. Right. Okay. It's not quite that simple. The majority of oral herpes are definitely caused by HSV-1, and HSV-2 tends to really only cause genital herpes.
Starting point is 00:27:46 herpes. It's pretty uncommon to get HSV-2 outside of the genitals. Interesting. You can, but it's much less common. However, HSV-1 can absolutely, and is becoming more common to cause genital herpes, largely because of like oral genital sex, because if you have it on your mouth, it's very easy to be able to spread to the genitals. Right, but not so much the reverse. Yes. Yeah, it certainly could. It's just less common. I don't really know the exact reasoning as to why. But in general, epidemiologically, what we see is HSV-2 tends to only cause genital herpes. Gotcha. It could, however, infect anywhere.
Starting point is 00:28:25 But what's very interesting is that HSV-2 infections of the genitals are associated with greater rates of recurrence than HSV-1 infections of the genitals. And the opposite is true for oral lesions. So HSV-1 is more likely to cause recurrence if it's an oral. infection than HSV-2 is if it's an oral infection. Isn't that fascinating? It's very bizarre. Why? Why? Yeah. That was my question. So I don't know. Like, are our nerves that different? I don't think so, but I'm not great at nervous system stuff. Well, there's something, maybe there's a bit about the history of the virus or the evolutionary history that could shed some light on that. Like, in terms of just being a very, very, very, very, very old association with humans.
Starting point is 00:29:19 Right. HSV-1 and two have been with humans for, like, as I'll talk about, millions of years. But so, yes, maybe that's part of it. It's just so highly specific to, like, hey, this is how I do it. I'm not willing to change. Yeah. Before we go into the viral shedding timeline, another question about HSV-1 and HSV-2, concurrent infections.
Starting point is 00:29:43 Like, can you be infected with both HSV-1 and HSV-2? and could you have like oral herpes caused by both HSV-1 and HSV-2? Great question. Absolutely, you can be co-infected. It's not uncommon to be co-infected with HSV-1 and HSV-2. I know that you, for example, if you have oral HSV-1, you will not then get genital HSV-1. Okay. Does that make sense?
Starting point is 00:30:10 Yes. But whether you could have, say, genital HSV-1 and genital HSV-2, that I'm not sure. I didn't see that anywhere, but it seems like you probably could unless they somehow like compete within the nerve. But I doubt it. So probably, probably could. Once you're infected with one, you have it and you just have it where you have it. Okay. That makes sense. Okay. And then your second, what was your second question? Timeline of shedding. Great. So glad you asked. So and this kind of is what I wanted to talk about next, which is is the idea that this is a latent infection actually. correct. Okay. So we know that HSV infections can show up, you know, you have a period of no symptoms, and then you can have symptoms, right? Like discrete periods of time where you have symptoms. And we know that during those times, you are highly infectious. So you're definitely shedding virus when you have an active cold sore or genital sore, for example. However, it turns out that up to 80, percent of the time that someone is shedding virus is when they're asymptomatic. Okay. So they don't,
Starting point is 00:31:26 you don't have to have any active lesions that you know of to be infectious potentially. And in fact, in some studies, people who were HSV positive shed virus on about 25 percent of days, regardless of their symptoms. And the viral loads will be much lower than if you have an active lesion, for example. Okay. But it would still be from that same mucosal surface. Gotcha. For a long time, we thought, well, if you just abstain from sex when you have active
Starting point is 00:31:56 lesions or use a condom if you have visible lesions, then that's it. You're protected, but that's not true. Right. They absolutely reduce the risk, but especially because you can shed when you're asymptomatic and you can have lesions that aren't covered by a condom. So condoms are not 100% effective in preemptive. preventing transmission by any means. Right.
Starting point is 00:32:19 But yeah, so that's kind of the overall general biology of HSV-1 and HSV-2. But that's not everything. Yeah, I want to know about treatment. Oh, there's actually more to talk about in terms of the disease itself before we can talk about treatment. Oh, okay, great. And that is because in general, this disease, herpes, it can be extremely debilitating. it can be painful.
Starting point is 00:32:47 As we've talked about, as you heard in the first-hand account, and as we'll talk a lot more about, I know you'll talk about it in the history air and we'll talk about it in the current events. The stigma associated with it is so severe in many cases. But in general, it's a self-limited infection that doesn't have very serious complications if it's left untreated. However, there are kind of three exceptions to that. So one is that infection of the eyes, which is possible because your eyes are a mucous membrane, can happen. Very painful. It can lead to scarring and blindness. So that's a pretty severe potential complication from an ocular infection with HSV. Okay, two questions about that. Oh, gosh. Okay. Number one. How, what is the incidence of that? Good question. And then I don't have a number on that. I do not know. Okay. And then the other question is like, could that be from an oral HSV-1 infection just like manifesting, like the vesicles manifesting in your eyes? Or what? It's such a good question, Erin. So I don't fully know. So let me answer that question in roundabout by talking about the other serious complication.
Starting point is 00:34:03 And that is encephalitis. Oh, yeah. So herpes encephalitis is very rare. We're talking. We're talking about. We're talking about. We're like between two and four cases per one million worldwide each year. Very rare. Okay. It's very rare. However, it is the most common cause of viral encephalitis in the United States and probably across the world, but we just have good data for the United States. Wow. Yeah.
Starting point is 00:34:34 So herpes simplex virus accounts for 50 to 75% of identified cases of viral encephalitis. A lot of viral encephalitis, we're just like, we don't know what caused this. But when we can figure out what caused it, 50 to 75% of the time, it's HSV. Okay. And we've talked about encephalitis kind of a lot, actually, on this podcast. We actually have. We just did the AAA. Yeah.
Starting point is 00:34:58 And then we did triple E. We've done. Encephalitis lethargica. We, yeah. So you know that that's infection of your brain itself. In the case of herpes, it tends to infect the temporal lobe. and or the frontal lobe. But so it causes just kind of the same generic encephalitis symptoms.
Starting point is 00:35:19 So mental status changes, confusion, behavior changes, headache, seizures. You can have neurologic deficits. But the good thing about HSV encephalitis is that we have treatment for it. Oh, cool. Yeah. But it is super high mortality, like 70% mortality rate if it's untreated. Oh my gosh. It's very serious.
Starting point is 00:35:43 Yeah. But again, very rare. Yeah. And what's interesting about encephalitis, and this gets to your question about how you get the eye infection, you can get potentially HSV encephalitis from either a primary or from a recurrent infection. Okay. Okay. So it could just be random.
Starting point is 00:36:02 Yeah. Yeah. Is it more common with HSV one than two? Yes. Great question. It's absolutely the vast majority of cases are HSV one. Okay. That makes sense. That also makes sense that it's the number, that it makes sense that it's the number one cause because so many people, as you'll talk about, like everyone is infected with HSV.
Starting point is 00:36:22 Yeah, exactly. Like it's everyone. Yeah. Yep. And then, yeah, the other serious complication is neonatal infection. So that's when a baby gets infected. It is possible for a fetus to get infected in utero, but it's quite rare, actually. It's more common for a baby to get infected if there are active lesions. a vaginal delivery, and this is most common if someone gets infected for the first time, so has their primary HSV infection during the last part of their pregnancy. Gotcha. Okay. Herpes is treatable. Yay! Well, kind of. So herpes encephalitis and neonatal herpes infection are very treatable, often without any long-term damage, depending on how severe the infection was. Treatment for oral and genital herpes is acyclevere or valaceyclivir or famclyivir. There's a few others too. But it does not eradicate the pathogen. Period. Okay. So there are a couple of different ways that you can go about treating it. Like you can
Starting point is 00:37:28 use just suppressive therapy and just always be taking this drug, kind of like we do with HIV, just keeps your viral load down really low. Or you can also use. You can also use. You can also use. You it just if you are about to have an outbreak. So you know how you can have these pro-dromal symptoms, like tingling or burning. So you can have enough acyclivir on hand to be like, oops, I think I'm about to have an outbreak and start taking acyclivir, and that will help squash that. Right. No topical doesn't do anything, not recommended. Interesting. Yep. It exists, but it really doesn't help, especially for genital herpes. That's what it started as, which is why I asked. Yes. Yeah. Yeah. It really doesn't work. So oral is the way to go. And then if you have severe infection, it's IV, actually. Oh, wow. Okay. Yeah. Isn't that cool? We have IV. Ooh, I love it. Are there side effects from Aesclevier?
Starting point is 00:38:19 Pretty minimal, actually. It's a pretty safe drug as far as they go. Cool. Yeah. Yeah. Yeah. So it's pretty good. And it's, of course, always possible that there will be resistance. But at this point, we don't see a lot of resistance to Acyclovere or Valle Ciclovere. How does it work? Oh, okay. It's a nucleoside analog. Okay. So in one of our COVID episodes, actually, we talked about remdesivir. And it's the same type of drug as that. So it basically blocks DNA replication of the virus. Oh. So it can't eliminate it, but it can stop it from replicating. So it stops you from having active infection. And it drastically reduces the chances of infecting others as well. So the infectivity. Okay. It doesn't eliminate it, but it drastically reduces it. Okay. Oh, and then what are some of the things that triggers outbreaks?
Starting point is 00:39:13 Good question. It really can depend on the person. It can be stress. It can definitely be like an immune compromise state. So whether that's like an actual immunodeficiency or just like another cold or another viral infection or bacterial infection that kind of gets your immune system out of whack. it can be, especially for oral herpes, it can be like UV light. So spending a lot of time in the sun can actually trigger a reactivation.
Starting point is 00:39:40 Interesting. Yeah. And then I think for some people, they can't really pinpoint any triggers. So it can really depend on the person. Gotcha. Interesting. Cool. Yeah.
Starting point is 00:39:50 What else? You got any more questions for me, Erin? I think I might have set the record this episode with questions. I like it, though. Actually, I think caffeine. Like that whole biology section was actually just you asking questions. And I still never got the answer that I really wanted for why my hollow bones feel so hollow when I drink caffeine. So yeah, that is the biology of HSV-1 and HSV-2.
Starting point is 00:40:22 Aaron, where did this thing come from? How did it get here? And why is it such a stigmatizing disease? Oh, I cannot wait to tell you. Let's take a quick break first. Anyone who works long hours knows the routine. Wash, sanitize, repeat. By the end of the day, your hands feel like they've been through something. That's why O'Keeffe's Working Hands hand cream is such a relief. It's a concentrated hand cream that is specifically designed to relieve extremely dry, cracked hands caused by constant hand washing and harsh conditions. Working hands creates a protective layer on the skin
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Starting point is 00:41:42 China's Ministry of State Security is one of the most mysterious and powerful spy agencies in the world. But in 2017, the FBI got inside. This is Special Agent Regal, Special Agent Bradley. This MSS officer has no idea the U.S. government is on to him. But the FBI has his chats, texts, emails, even his personal diary. Hear how they got it on the Sixth Bureau podcast. I now have several terabytes of an MSS officer, no doubt, no question, of his life. And that's a unicorn.
Starting point is 00:42:19 No one had ever seen anything like that. It was unbelievable. This is a story of the inner workings of the MSS and how one man's ambition and mistakes opened its fault of secrets. Listen to the Sixth Bureau on the IHeart Radio app, Apple Podcasts, or wherever you get your podcasts. In 2023, a story gripped the UK,
Starting point is 00:42:43 evoking horror and disbelief. The nurse who should have been in charge of caring for tiny babies is now the most prolific child killer. in modern British history. Everyone thought they knew how it ended. A verdict? A villain. A nurse named Lucy Letby.
Starting point is 00:43:01 Lucy Letby has been found guilty. But what if we didn't get the whole story? The moment you look at the whole picture, the case collapses. I'm Amanda Knox, and in the new podcast, doubt the case of Lucy Lettby, we follow the evidence and hear from the people that lived in. To ask what really happened when the world decided who Lucy Lettby was. No voicing of any skepticism or doubt. It'll cause so much harm at every single level of the British establishment of this is wrong.
Starting point is 00:43:32 Listen to Doubt, the case of Lucy Letby on the IHeartRadio app, Apple Podcasts, or wherever you get your podcasts. As you mentioned, Aaron, herpes viruses are found in all of those animal groups that you named. Yes. I even have mollusks here again. And there are also probably a great deal of herpes viruses that, remain undiscovered. And one of the major characteristics that herpes viruses share in addition to all of the ones that you listed is that they have a super high specificity to their host species of preference. Yeah. So like there isn't a whole lot of species jumping. And due to this high host specificity,
Starting point is 00:44:43 viruses that tend to cause lifelong infections can actually be very useful in teasing apart when one species diverged from another or studying genetic different. Or studying genetic different. in strains can give us a lot of insight into things like when and where migrations happened. So as I alluded to earlier, herpes viridae is a very, very old group, like millions and millions of years, which makes sense given its wide host range and diversity. But the focus of this episode is not on herpesviridae. It's not even just on human herpes viruses. It's just about HSV-1 and HSV-2. So where did the... these guys come from, and what can they tell us about our own history?
Starting point is 00:45:28 Yeah. Well, molecular evolution research shows that HSV-1 probably came with humans as they split off from our last common ancestor with other primates around 6 to 7 million years ago. What? Yeah, 6 million years. Literally as long as we've been humans. Oh, yeah. Even before.
Starting point is 00:45:49 And HSV-1 enjoyed its time as an only child for a few million. years, but then was joined by HSV-2 between 1.4 and 3 million years ago and an instance of cross-species transmission. So as early humans, we had HSV-1. We had HSV-1 from the get-go. From the get-go. And then we picked up chimpanzee herpes virus, but then it sort of evolved into HSV-2. Fascinating. Right? Yes. Okay. So where do we go from here? Or rather, where did HSV-1 and HSV-2 go from there? Yeah. Well, wherever humans went, of course.
Starting point is 00:46:31 Yeah, okay. And I think this is where it's really interesting to consider how the characteristics of different pathogens helps to shape their spread historically and, like, even prehistoricly. So in our past episodes, when we've talked about the evolutionary origins of our particular infection, one of the themes that we always hit on is how large human settlements, facilitated the spread of infectious diseases, particularly those transmitted by respiratory droplets or contaminated water. Right.
Starting point is 00:47:01 You know, your basic crowd diseases. Yeah. For many of those diseases, the agricultural revolution was a tipping point. So a settlement had to reach a certain population threshold before those pathogens could be sustained. Otherwise, they would just burn through the population and die out. Right. But HSV-1 and HSV-2 both started their history with human. long before anyone even thought about domesticating cows or goats or horses.
Starting point is 00:47:30 And the reason why the virus didn't just burn out is in its biology. Yeah. So it's these long-lasting and very easily transmittable infections. Right. And so they could be sustained intergenerationalally very well, like from a mother kissing a baby, from grandparents, kissing grandchildren, et cetera. Like, just close contact. Plus, they don't tend to.
Starting point is 00:47:54 to kill you for the most part. Yeah, that's my number two is that the infection is incredibly mild, and so a lot of people don't even know that they have it. Right. Like that no one even thought twice about it. So we know that humans and herpes have been hand in hand for literally millions of years, but when did it first show up in writing? So when did people actually take note of it? Yeah. And the answer is that, as per usual, we're not really sure. Okay, so the word herpes itself was used for hundreds of years to describe any kind of blistering inflammatory skin condition. And the word comes from the Greek herpian, which means to creep or move slowly. Yeah, I saw that too, and I was waiting for you to say it.
Starting point is 00:48:38 Oh, yeah. And so when that word, herpes, appears in ancient or historical writings, we can't know for sure whether it was referring to HSV outbreaks or something else, like shingles or even like small pox or something like that. Okay, that makes sense, yeah. But, as always, where there's uncertainty, there's somebody willing to venture a guess. So, for instance, in ancient Rome, Emperor Tiberius, who ruled from 14 to 37 CE, supposedly banned kissing at public ceremonies and rituals during an epidemic of oral blisters throughout the empire. Okay, all right. So, Maybe. Oral herpes, HSV-1 might have been the first descriptor.
Starting point is 00:49:28 However, the other complicating factor in determining what was described first is that there are other blistering rashes on your genitals that could have been confused with herpes. Definitely. We're not really sure. Okay. So regardless of whether the kissing ban really happened or was really Tiberius' way to try to control herpes, HSV-1 and HSV-2 do seem to have been pretty widely known throughout history. And there are early references on how to treat the blisters, such as cauterizing open sores using an iron, or rubbing gold wedding bands on the lesions. What?
Starting point is 00:50:07 Yeah. Why? Gold, maybe it was partially like symbolic. Maybe it was partially just gold is valuable, so it's got to have medical properties. Yeah, but if it's just gold wedding vans and not like a gold coin, I feel like that's pure symbolism right there. I know, I know. Well, it's better than this other, the third one I'm about to say, which is that people also recommended the use of snail slime to treat lesions. No.
Starting point is 00:50:40 Yes. What kind of snail? I don't know. It was referred to in Scotland, so I don't know what species of snails are in Scotland. Scotland or what is the most common species are. How much slime? I have so many questions. I know. I mean, what do you just like? Do you put the snails directly on it or do you just gather the slime? I don't know. You'd have to have like what kind of slime gathering equipment would you need? Great question. I mean, these are fantastic questions. I don't have the answer to any of them. Wow. Snail slime. Don't try that. Don't try that. No.
Starting point is 00:51:18 And then a mention of herpes even made its way into Shakespeare's Romeo and Juliet. What? Yep. In a speech by Mercutio in Act 1, Scene 4. And I don't know how to read in iambic pentameter, so apologies in advance. Our lady's lips who straight on kisses dream, which oft the angry Mab with blisters plagues, because their breaths with sweetmeats tainted are. So basically, Mercutio is describing the fairy queen.
Starting point is 00:51:48 Mab, who plays pranks on sleeping humans. And he's describing her, like, one of the things that she does is put places blisters on young women's lips because she's jealous of them. Oh, interesting. I think that's an interpretation. But so for any listeners out there that has to read Romeo and Juliet for school this semester, you should definitely bring that up in discussion. Okay, so, but except for these brief mentions of blisters or treatments for blisters, herpes didn't really take up that much space in historical medical texts. Again, not very surprising considering the infection is so, you know, relatively benign. And only beginning in the 1700s did physicians start to take a closer look at these blisters. And when they did, they primarily concentrated on the genital herpes.
Starting point is 00:52:41 Interesting. In fact, the connection between colds, sores and genital sores wouldn't really be realized until much later. That was going to be my question. When, Aaron? Well, I mean, it was really when microscopy and virology had advanced enough to allow people to actually isolate different strains and say, okay, this is the same virus. Wow. It was that long. And there were probably similarities noted. Like, oh, this is, like these lesions look very similar, but, you know. Okay. So the first recognized script.
Starting point is 00:53:14 of herpes was made in 1736 by French physician John Astruc and his book on what were then called venereal diseases from the word venery, which is like, we don't use that term anymore for very good reason because it's super judgmental. And this book came on the heels of the huge outbreak of syphilis in Europe that had begun in the early 1500s. So see our syphilis episode for more on that. And in an attempt to try to reduce the incidence of sexually transmitted infections, particularly syphilis, the French government ordered mandatory medical surveillance for sex workers, which led to a rapid growth of information on like all STIs. And so in this first description, in addition to commenting on the size, the shape, and the
Starting point is 00:54:02 location of the blisters, and a bit about like the recurrent nature and some sort of the timeline of infection, Asterisk also suggested a connection between the appearance of the blisters and sexual intercourse. Although the link between sex and genital herpes seem to be accepted by most physicians by this time, some insisted that it must be due to another reason because, oh, I had observed this in this young, recently married, very proper woman, and there's simply no way it could be sex-related. And like, you know, it was just sort of, you had these preconceived notions of like, oh, well, my wealthy, well-to-do patients have these lesions as well. and it couldn't be, like, it can't be related to sex.
Starting point is 00:54:48 Yeah, because wealthy, well-to-do people don't have sex. They don't have sex. Yeah. And so some of the alternative reasons that were suggested ranged from congestion of the genitals. And then they also claimed it was just nervous oversimulation or hot weather, which is interesting about the UV radiation, actually. Yeah. I'm like, hmm. But how much UV radiation are people getting on their labia and their penis? Probably not a ton, especially in the 1800s.
Starting point is 00:55:21 Right. Probably not very much. Yeah. Yeah. So, well, anyways. Well, the early 1900s brought some clarity to the situation via what was likely medicalized torture, although I don't have enough info to say for certain. Okay. But basically, you know, in an offhanded little comment somewhere I read that material from blisters on the genitals was in general. into the skin of some people, quote, human subjects, and then they subsequently developed blisters. Like, nobody volunteered for that experiment.
Starting point is 00:55:51 No. I mean, even the term volunteer is, like, problematic today in terms of coercion. Anyway, okay. So in 1934, Albert Sabin, whose name might sound familiar from our polio episode. Saib. Along with two other colleagues, isolated a herpes simplex virus, and then additional strains were detected in later decades. And during the first half of the 20th century, herpes in general received a pretty good
Starting point is 00:56:20 deal of research attention as scientists studied the natural history of the virus and discovered its ability to cause these, you know, quote unquote latent infections just hanging out in the nervous system. Because it is a very interesting virus biologically. Oh, it's fascinating. Yeah. But it wasn't until 1967 that researchers described the clinical. differences between HSV-1 and HSV-2.
Starting point is 00:56:47 Ninety-seven? Mm-hmm. And then, but it was also around the same time that researchers, you know, discovered the tendency to cause infections on either the mouth or the genitals, you know, respectively, HSV-1, HSV-2. Yeah. All right. So in the story of herpes, Erin, we're already in the 1960s.
Starting point is 00:57:07 And there's one glaring piece of the puzzle that's missing, the stigma. Yeah. Yeah. Everyone's just like, yeah, we all have this and it's fine. Yeah. Because like the stigma, and so the reason that I haven't brought it up is because it wasn't there yet. What? It wasn't there. Of course, like the transmission route of HSV-1 and HSV-2 was well established, and many people were happy to point accusatory and judgmental fingers at those with other better known STIs, such as syphilis, gonorrhea, chlamydia, etc. but herpes didn't receive very much social attention, I guess I'll call it, even in the most popular sex or sexual health books of the 1970s. Herpes barely gets a mention. What?
Starting point is 00:57:55 Why was that? And what happened to change this public perception of herpes to what it is today? Yeah. Okay, so the first question, why herpes didn't garner that much attention, that could have been due to a number of different reasons. One could be that the other more common STIs, with their potential to cause much more serious health issues, had long overshadowed the mild infections caused by HSV. Another reason could be that since at the time there was no treatment for HSV, its short descriptions primarily focused on the natural history of the viruses,
Starting point is 00:58:33 and there wasn't much more to say about it. Okay. Some healthcare professionals were even hesitant, to label HSV-2 as a sexually transmitted virus since it could also be spread non-sexually. So that takes me to the next question. What happened to flip the switch on herpes? Yeah. Before I start to answer that, I want to say that for this part of the story, I'm focusing on how the stigma of herpes grew in the U.S. in the last few decades. I don't really know how herpes is perceived in other parts of the world, but I would love to know more. So if you, you know, have any
Starting point is 00:59:09 info or articles or personal experiences, like please send them our way. I would love to know more about that. Okay. So for hundreds of years and into today, sexually transmitted infections have been used by some people to drive a particular narrative. As Alan Brandt pointed out in a book I read called No Magic Bullet, which is about the social history of STIs in the U.S., these narratives fall into three basic themes. One is that sexually transmitted infections are considered punishments for immoral behavior. Another is that people use STIs
Starting point is 00:59:47 to argue for a more conservative or restricted sexuality. And the third is that an STI is not simply an STI. It's a symptom of a much larger systemic issue and indicative of the decay of society as we know it. Oh, geez. So those are like the three, you know, primary narratives that it had been used to in terms of like to make some sort of moral argument.
Starting point is 01:00:10 Yeah. For a long, long time, more prominent STIs like syphilis and gonorrhea were used as the cases in point. But then came antibiotics. And these painful, deadly diseases that were delivered as divine punishment cleared up with a quick course of penicillin. Oh, this is fascinating, Erin. Mm-hmm. And then the sexual revolution of the 1960s. really change the landscape in terms of normalizing sex, having all different kinds of it,
Starting point is 01:00:41 talking about it, and most importantly, enjoying it. And the sexual revolution deserves a much more nuanced, like, history retelling than I can give it or that I'm going to give it right now. But I'll recommend a book that covers some great ground. But casting off the puritanical attitudes about sex that had prevailed for hundreds of years provided a little glimpse into what it might be like to live in a progressive non-judgmental society. This social movement gained momentum with policy changes such as the legalization of birth control pills and abortion. Make love, not war, was the motto and also the name of the book on the sexual revolution that I was going to recommend.
Starting point is 01:01:23 But, you know, of course, the sexual revolution wasn't the utopia that is often described to be. some of the more prominent figures held racist or sexist or homophobic views, and there were still clear boundaries on what was or wasn't acceptable and, you know, and so on. But that glimpse looked great to some people. To others, it looked dangerous. The youth of America was destroying the natural order of things, quote unquote. And it's not like the stigma or shame surrounding sex or STIs disappear during this time. It was just, just drowned out by louder voices for a little while. And when the sexual revolution started to wane a bit in the late 1970s for a number of reasons,
Starting point is 01:02:10 including economic downturn, commercialization of sex, sort of disillusionment overall with this movement, there were plenty of people ready and willing to take back up that mantle of sex is bad and you deserve to be punished for having it. But they needed a new villain to fill the roles previously held by syphilis, gonorrhea, and Chlamydia. Because those are treatable now. Uh-huh. Enter herpes. What? Herpes, despite being, for the most part, as you described, a very benign infection that does not require sexual contact to transmit, herpes suddenly became the symbol of the consequences of sexual liberation. Wow. It became the evidence that opponents of the sexual revolution had long been looking for that any kind of sex outside of the narrowly defined one man, one woman only after marriage,
Starting point is 01:03:03 was going against Mother Nature. The evangelist Billy Graham said, quote, We have the pill, we have conquered VD with penicillin, but along comes herpes simplex too. Nature itself lashes back when we go against God. Of course, HIV was also used to drive these same repressive narratives. Check out our HIV episode from way back on our first season for more. But in response to this moralistic interpretation of herpes, a commentator from 1982 said, quote, if herpes did not exist, the moral majority would have had to invent it.
Starting point is 01:03:40 Whoa. And then popular media, you know, fed into this too. So early 1980s news articles in like Time magazine were titled, quote, today's scarlet letter, herpes. Or herpes, the new sexual leprosy. The newest sexual leprosy, see our leprosy episode, if you'd like to know all about that. Oh, my. Uh-huh, uh-huh, uh-huh. And so these types of headlines and these types of like fear-mongering, they just, all they did was increase the hysteria and stigmatization around the virus by telling the story of how Jim or Nancy or whoever and how their chance at love and happiness was forever ruined by their positive diagnosis. Like they weren't informative pieces of journalism.
Starting point is 01:04:27 Right. They were scare tactics. Your life is ruined because now you have herpes. Uh-huh. And I think it's really important that like people's stories are told and that like, you know, if someone feels like their life is ruined, let's tell that story. But let's talk about why they feel that way and why we as a society have made them feel that way.
Starting point is 01:04:47 So. Not just be like, yep, you're right. Yep. Yeah. And then there was a new way. word that was introduced into the conversation that further othered people who were HSV positive, herpetic. Herpetic.
Starting point is 01:05:02 Herpetic. Words, and we've kind of talked about this a bit before on the podcast, but words that reduce a person's identity to one thing, herpetic, syphilitic, lepers. These do an enormous amount of damage and are incredibly dehumanizing. But in a way, that was kind of the goal of the people using them. And so herpes rose to a position of notoriety in the late 1970s and into the early 1980s, helped along by these many, many news reports on the topic who knew how to get that readership up, and the effectiveness of this new narrative around genital herpes can be reflected in some stats from this time.
Starting point is 01:05:42 Between 1970 and 1985, the prevalence of HSV2 in the U.S. rose from 13.6% to 15.7%. But between those same years, roughly, doctor's visits for genital herpes increased 10 times over. Okay, yeah. Yeah. And that's not necessarily a bad thing, because if you believe that you have an STI, you should go to a clinic or talk to your primary care physician. Yeah. But that lopsided increase is indicative of how awareness had crossed over into fear. Because it wasn't just that the number of doctor visits was increasing, but it was all.
Starting point is 01:06:22 also the response to a positive diagnosis. Shame, depression, self-exile, loss of self-worth. These were all very real and common responses to being diagnosed with herpes. And this was also reported in those news articles. But again, not in that, hey, let's talk about why this is happening. Rather, like, well, this is what you get. So don't have sex. This is the consequences of, yeah. But who stood to gain from all of the stigma around herpes. Well, certainly the opponents of progress, those who wanted to impose their moralistic beliefs over everyone else and control people's bodies,
Starting point is 01:07:00 and also news outlets who are generating these must-read articles. But there's a third group who had been waiting for their time to shine. Pharmaceutical companies. Oh. In 1982, around the same time as the peak of herpes panic, The FDA approved acyclovere, the very first treatment for HSV-1 and 2, produced by the pharmaceutical company Burroughs Welcome. A-Cyclavier was first introduced as a topical cream, and sales were disappointingly low, probably because, as we talked about, it doesn't really work. Doesn't really work?
Starting point is 01:07:36 The development of oral acyclavir, so like the oral pill form, that improved sales quite a bit, as did the magazine ad campaign that Burroughs Welcome launched in Cosmo, Rolling Stone, People, Playboy, and other popular magazines. And this may be where you go, hey, I think I smell a conspiracy. Or, hey, I think I've heard this conspiracy theory before. So there's a conspiracy theory. Also, I'm going to start a petition to call these conspiracy hypotheses because this is not a theory. Yeah, I know. It's part of the problem when people don't understand the word theory. It's because of things like that. Exactly. So there's a conspiracy. Hypothesis that's all over the internet that claims that Burroughs Wellcome created the herpes stigma to sell Acyclovir because of the early low sales.
Starting point is 01:08:28 Wow. Let me just say that from what I've read, there doesn't seem to be a whole lot of truth or at the very least evidence in this conspiracy hypothesis. Did Burroughs Welcome play into the stigma and fear-mongering? Sure. Did they profit from it? Absolutely. But did they create it? Not likely.
Starting point is 01:08:49 Yeah. If you look at the timing of when their promotional campaigns began, the stigma around herpes was well established by the time the first ads were out. And even then, the ads themselves didn't really buy that much into the herpes panic. They often represented someone who felt comfortable in their dating life or secure after talking to their doctor and getting treatment. So it was like they were for the most part from what I saw positive. ads. Interesting. So, and also, Burroughs Welcome didn't need to create any STI stigma. Like,
Starting point is 01:09:24 if you look at the history of STIs, there's always stigma, always, always, always, always. Not hard to have, yeah, stigma around STIs. Yeah. And when directly asked about it, not by me, but in an article that I read, a representative denied any involvement in promoting the stigma, which, like, I know what else would you expect them to say? But whatever. You go, oh, yeah, sure, yeah, we totally did that. That was great marketing. And I don't want to sound like I'm defending big pharma because I'm definitely not. I'm just saying that in this particular instance, Burroughs Welcome may be innocent of what they've been accused of.
Starting point is 01:10:01 We got to say the facts, you know what I mean? I like truth. I mean, that's where, that's what I just like it. Created by Burroughs Welcome or not, the stigma around herpes never abated. When I earlier referred to the peak of the panic, I meant in terms of the number of news articles or made-for-TV movies about herpes. Since then, the stigma has barely budged. To this day, it remains perhaps the most stigmatized of all the STIs. There's a Cards Against Humanity card about it.
Starting point is 01:10:34 It's referenced in countless TV shows and movies as a joke. And all of that serves to further present silence and shame as the appropriate responsibility. response to a positive diagnosis. Yeah. Somehow it is socially acceptable to make fun of this and to other or ostracize people who are HSV positive. And I think that there's a lot of, you know, undoing that remains in terms of breaking down the stigma or examining it at the very least.
Starting point is 01:11:06 And I really, really like the way that Courtney talked about navigating the stigma because it is so big that like it is a bit maybe unrealistic to say, you know what, in my lifetime, there will be like, let's end the stigma against herpes. So, Erin, it's your turn. It's kind of an abrupt end to the history, but that's all that I've got because, you know, since, I mean, there's, I could talk about an unethical vaccine trial that happened a little while back. But, I mean, really, I just kind of wanted to end by saying, hey, we really, the stigma. is where it was in the early 80s, more or less. So hit me with some prevalence stats, some social science stats, some psychological stats. Tell me what's going on with herpes today.
Starting point is 01:11:55 Would love to right after this break. You wanted stats. Let me give you some stats here, Aaron. Worldwide, an estimated 3.7 billion with a B, humans, under age 50, have HSV-1. That's 67% of the global population. Do you say under 50? Yeah, okay. Here's a weird thing about all of the stats associated with HSV-1 and HSV-2. They end at age 50, as if after age 50, you don't exist.
Starting point is 01:13:04 Isn't that bizarre? It's the Hollywood of... Although, if it were the Hollywood of whatever STIs, then it would. would be like males and females under 50 and males over 50. Right, exactly. The World Health Organization also estimates that of those 3.7 billion with a B people with HSV-1, somewhere between 120 and 190 million of those people have genital HSV-1, rather than oral, HSV-1, and an estimated 491 million people ages 15 to 499.
Starting point is 01:13:42 which is 13% of the global population have HSV2. I mean, it's extraordinarily common. It is so, so common. And it really does bug me that you can't get numbers for, like, you still have it at 52, okay? Maybe there's a legitimate reason for it. Well, okay, let's talk about some legitimate reasons for things, because I don't have a lot of them. I haven't found a lot of them. Okay, listen.
Starting point is 01:14:12 Wonderful. So, unlike other STIs, herpes is not a notifiable disease, which means we don't have great state-by-state data and we don't have super great numbers on the incidence of infection. It's also not universally screened for. If you go into a clinic because you are symptomatic in any way or you have a partner who has tested positive or you have any type of concern and want to be tested, then absolutely. any doctor would test you for herpes. But universal screening for herpes is not recommended the way it is recommended for some other STIs. And the CDC, as well as the USPSTF, which is the US Preventative Service Task Force and a bunch of other like task force guideline generating organizations all agree on this idea to not recommend universal screening. So let's explore where. Why. Yeah, I want to hear this. In my opinion, there's one good, legitimate reason, and then some others that they kind of throw in that I don't know how I feel about.
Starting point is 01:15:25 Okay. Okay. Yeah. So largely, our screening tests for HSV are super cruddy. Which is not that surprising considering sort of the history of a lack of funding or maybe not a big incentive for. I think we're lacking incentive. Yeah. So at this point, the false positive rate can be as high as 50% depending on which test is used. And confirmatory testing, so not the screening test, but like confirmatory better testing
Starting point is 01:15:59 is only done at a few labs in the country. So it's not widely available. I think it's also worth mentioning that even during pregnancy, which we know could potentially be high risk because of the risk of neosk. natal transmission, we still don't recommend universal screening, which is something that we do do during pregnancy for a lot of other STIs, even though we know that people with vaginas are more likely to get herpes overall. And again, is this because the high rate of false positives and sometimes false negatives? Yes, absolutely. Okay. And so I do want to point out, however, that the CDC on its
Starting point is 01:16:39 FAQ section, which I think is the supposed to be accessible section of their website, they list a lot of reasons besides the false positive and false negative rate that they don't recommend universal screening. They say in part because the stigma associated with HSV is so great, then that kind of goes along with we don't want to give someone a false positive because there's so much stigma. It's also, they say, because we don't have treatment that can eliminate the infection. But we do have treatment that can greatly reduce your viral load. We do. And it can also reduce the rate of transmission.
Starting point is 01:17:18 Okay. They also say on the CDC website that because the long-term complications are essentially minimal to non-existent with HSV compared to other STIs that we do screen for, like chlamydia and gonorrhea and syphilis. They also really highlight in their FAQ section that part of their reasoning, part of their rationale is that telling people their HSV status does nothing to change their sexual practices, or at least we don't have evidence that it will change their sexual practices. Okay. I really don't like that. There are lots of problems with this, I feel. There are. And I think that the biggest, the most legitimate reason, and the one that USPSTF sites in their guidelines
Starting point is 01:18:10 is just because our screening tests are so cruddy. What's the point of a screening test that has a 50% false positive rate? That's... Right. I mean, and I think the fact that the CDC brings up the aspect of stigma associated with this is good because it's like, okay, we're acknowledging that there's a huge problem with stigma, but at the same time, it's saying there's this problem, but yeah, we can't do anything about it. So it's not actually changing the conversation about why the stigma exists.
Starting point is 01:18:40 And also the fact that this is still a public health issue that can be affected or impacted in some way by screening. I don't like it. I don't think either, I think. So I guess that leads us to the question. of is there any hope in terms of vaccines, et cetera? You want to talk about that? Yeah, I do want to know that because, so there's a chicken pox vaccine. There is. And that can hide out on your nerves. It does. So why don't we have a herpes vaccine? Yeah, good question. One paper that I read that I really, it was pretty dense, but I really enjoyed their last closing line. It was. And I quote,
Starting point is 01:19:28 HSV is assuredly wier than we are clever. Okay. Yeah, we still don't have a vaccine. There have been a few that have made it all the way through phase three trials, but then in those phase three trials have been found to just really not be effective. We just still don't have a good handle on the immune response to HSV and how exactly to best make a vaccine. So there are certainly a lot of groups working on it. You know, there is still a lot of interest in both prophylactic, so preventative vaccines, but also therapeutic vaccines, especially
Starting point is 01:20:11 not just in the U.S., but in low and middle income countries, because there is a lot of association between HSV infection and increasing the risk of HIV transmission. So in a lot of places where HIV is a very, very high burden. People are like, well, if we target HSV, could we then also reduce HIV? So there's definitely a lot of groups working on it, but we're not there yet. Okay. So with that in mind, we've talked a lot about stigma in general in this episode. We wanted to talk with someone who is a bit of an expert, not just on herpes and the stigma associated with herpes, but on sexually transmitted infections in general, who wrote an entire book about these bugs, their science, their history, and their stigma. This was a really
Starting point is 01:21:08 exciting interview for us, you guys. No, it was, it was such a great interview. I had such, we had such a good time. We did. We were honored and thrilled to get to speak with this next guest. We had such a fun conversation. We can't wait for you all to hear her thoughts about herpes, about other STIs, how to have the talk with kids, why it's so important now we talk about sex, the role of doctors and providers in creating a sex positive environment. It's really fun. So without further ado, may we present Dr. Ina Park. I'm Dr. Ina Park. I am an associate professor at the University of California, San Francisco School of Medicine, a medical consultant to the Centers for Disease Control and Prevention in the Division of SDD Prevention.
Starting point is 01:21:51 and the medical director of the California Prevention Training Center. Awesome. So we wanted to start off by asking you about your upcoming book, Strange Bedfellows, which is due to be released next February. First of all, we absolutely both loved the book, like so much. We're just laughing out loud. It's phenomenal. Oh, my gosh.
Starting point is 01:22:13 We laughed so hard, we spit out our quarantinis. I sure did. It's so accessible and hilarious, but it's also so. informative. So can you tell our listeners what Strange Bedfellows is about and what inspired you to write it? Sure. So Strange Bedfellows really is a love letter to my field, which is such a transmitted infection and HIV prevention research. And it takes stories and history and, you know, in-depth interviews with scientists and humor and sort of weaves them all together. And each chapter tackles, you know, a different concept or a different infection and traces, you know, some of the
Starting point is 01:22:53 history that's relevant to it as well as some of the, you know, cutting edge research and the current thinking. But throughout, I think it wears its theory really lightly and, you know, humor, I feel like I try to infuse throughout and real stories that I think people can connect with. Well, you did such a great job with it. It was, I kept reading it going, oh my gosh, I need to tell every person I know about this book. Well, feel free, Erin. And we're starting here. Yep. So I think we've both had friends tell us about their STI diagnoses and how their doctor kind of just handed them a prescription and then shoot them out the door, leaving not a lot of time for discussion or questions. So how much do you think that providers' attitudes about sex and sexually transmitted infections contributes to the stigma that we see in the general
Starting point is 01:23:44 population? I think it can strongly contribute. And I think part of the issue that we talked about is that our larger sort of societal discomfort, that translates to providers. Unless you're practicing that skill of talking about sex, if you're not used to talking about it, you're, you feel awkward and then the patient senses that you feel awkward so then they feel awkward. And so I do think that it can contribute. And so I have an editorial act coming out in a couple of days where my colleague and I talk about how providers really, if they don't feel comfortable doing it, they need to figure out some other way to assess sort of sexual behavior and what's going on, you know,
Starting point is 01:24:30 either through some sort of like computer or tablet-based sort of assessment or paper-based assessment. Because if they don't feel comfortable asking those questions, then they're not going to be able to counsel effectively. And so I absolutely think it contributes. But that being said, I know that some physicians and other, you know, healthcare providers are never going to get there. You know, I acknowledge that. They're just never going to get there. And so that's why I feel like if people are able to put systems in place to make sure that that information is, you know, collected somehow, especially like people's gender identity and as well as, you know, their sexual sort of preferences
Starting point is 01:25:09 and their sexual behavior, I think that will help at least set up to have enough information to counsel effectively. Yeah. And so, you know, from your experience as a primary care provider, how do you walk that super fine line between talking with the people that you treat about the risks of these infections or the risks of certain sexual behaviors while also encouraging the sex positive or healthy sexual attitudes, basically how do you strike that balance? between, you know, where knowledge becomes empowering without causing fear or shame.
Starting point is 01:25:45 Right. So I do think it's a very fine line and, you know, you tow the line and sometimes you swing back and forth from one side to the other. I think my sort of take on it is that I generally am very sex positive in terms of the fact that I normalize having sex, that you should have sex. If you want to have sex with multiple partners, it's, you know, it's fine. what I try to do is take a harm reduction approach and say, listen, STIs are going to happen to everybody. So normalize. And then also an acceptance piece of it, that STIs are sort of the cost of doing business in the sexual marketplace. Even if you use condoms 100% of the time for penetrative sex, you can still catch, you know, particularly the viral STIs, you can still catch those.
Starting point is 01:26:33 And so I think so the normalizing acceptance. And then if people sort of ask questions, I am truthful about what the consequences can be of having multiple partners in a short period of time, for example, which certainly could increase the risk of STIs in HIV. But I don't, you know, I don't discourage people from expressing themselves sexually however they want to. I don't think it's effective because people are going to have the drive and the urge to have sex and making them feel guilty and ashamed about it just prevents them from actually coming in and seeking
Starting point is 01:27:09 the services they need. Some people might disagree with me. They might, you know, say we should take a little bit more of a truthful and factual and not scare tactics, but you know what I mean, a little bit more of a hard line on it. And I just, I just don't feel that way. Yeah. Yeah. So what are some of the ways that we as individuals can work towards reducing the shame and stigma surrounding STIs. What's your advice for us? So two things. I think those folks that are parents, I think, should probably begin having discussions with kids early as soon as they start bringing up the topic and normalizing sex and normalizing the fact that STIs are a consequence of sex that are going to happen to everybody. So that's a piece to for with young people. The other
Starting point is 01:27:57 thing is, is I think being open with friends and colleagues about getting STI tested, or if, you know, you actually have an STI telling a friend. And I think the more people that know other people who've been dealing with an STI, I think, you know, the more other people realize that this is a consequence of having sex, it's not something that only happens to other people. Do you know what I mean? I also think that we should change our language around how we discuss STIs because I'll tell you, I was at a hotel at a conference and I was in line and someone asked,
Starting point is 01:28:33 me what I do for a living. And then, of course, like, it always ends up becoming a longer conversation as soon as I tell them. But she was telling me, this woman in the line was telling me, like, oh, yeah, I just started dating again because I broke up and I got my STI test and I was clean. And a lot of patients use this terminology of, I'm clean. And that would be, that would imply that if you had an STI, that you would be dirty, right, if that's the opposite of clean. So changing our language around how we talk about STIs, I think would definitely help. And then I also think with herpes in particular, I would like to change our language and call it something like HSV positive instead of having herpes because most of the time people who have HSV do not have actual clinical herpes. And yet, you know, if you talk about yourself as saying, I have herpes, you know, really you don't.
Starting point is 01:29:25 You know, you have a virus. You may or may not actually express it. And you may not have symptoms at all. Most people don't, right? Recognizable symptoms. So I think framing it as calling it, you know, HSV positive, just the way we say HIV positive instead of, you know, having AIDS, because most people with HIV don't have AIDS.
Starting point is 01:29:43 I think changing our language would certainly help. I think with the advent of social media, I think there always were sex positive people out there. But now I feel like young people can actually more easily find examples of people who are sex positive out there. And that is something that just I didn't have growing up. So I actually think that, and I also think that there is, there is a lot more visibility for, you know, sex positivity. So I think that, you know, we haven't, we haven't, I don't think gone backwards, but we still have a long way to go.
Starting point is 01:30:16 Let's put it that way. Thank you so much, Dr. Park. That was so wonderful. We really appreciate you taking the time out of your day to chat with us. It was such a fun conversation. Oh, I love it. And you guys should go and pre-order Strange Bedfellows by Ina Park as soon as possible. and let me just tell you you will not be disappointed.
Starting point is 01:31:00 Oh, it's so good. Okay, so. Sources? Yes. Okay. A few of the books, I already mentioned Make Love Not War by David Allen. And then there's no magic bullet, a social history of venereal disease in the U.S. That's by Alan Brandt.
Starting point is 01:31:18 And then also, of course, I used Strange Bedfellows by Dr. Park. Wonderful. And then I want to shout out a couple of articles that were super helpful. So one is by Huttfeld from 1966 called History of Herpes Genitalis. And then another one is Wertheim et al-2014 evolutionary origins of human herpes simplex viruses one and two. And then another great article that I found was actually on slate.com by L.V. Anderson titled How Herpes Became a Sexual Buggy Man.
Starting point is 01:31:52 And that is an incredible read and has like, all of the, you know, sources linked. So that was, that was very helpful. We will post all of our sources for this episode and every single episode on our website. This Podcast Will Kill You.com. You can learn lots more about the biology, the specifics on vaccine development, encephalitis, neonatal infections. There's a lot there.
Starting point is 01:32:16 Yeah. Great. Thanks again so much to our wonderful guest, Courtney Brame and Ina Park. We really appreciate you taking the time to chat with. us and we just had the best time talking with you. We wish the conversations would never end. I know. It was so fun. Thank you again so much. And thank you to Bloodmobile for providing the music for this episode and all of our episodes. And thank you to you listeners for listening. We love you. We appreciate you and we hope that you enjoyed this episode. We hope so. All right. Well, with that,
Starting point is 01:32:48 wash your hands. You filthy animals. I'm Amanda Knox and in the new podcast, Doubt the case of Lucy Letby, we unpack the story of an unimaginable tragedy that gripped the UK in 2023. But what if we didn't get the whole story? The moment you look at the whole picture, the case collapsed. What if the truth was disguised by a story we chose to believe? Oh my God, I think she might be innocent. Listen to Doubt, the case of Lucy Letby on the Iheart Radio app, Apple Podcasts, or wherever you get your podcasts.
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