197 - HIV with Liz Sutherland
For many people. the very topic of HIV is quite scary, but not so for our guest this week, Liz Sutherland of Positive Life New South Wales. We chat with Liz about the vast wealth of information that most of us don't know about HIV. including how it's epidemiology is changing, effective methods for treatment and prevention, and how we can keep ourselves best informed and in charge of our own health.
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Transcript
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Emily: This episode is brought to you by Adamandeve.com. For 50% off almost any item, free shipping and a free gift, use promo code Multi at checkout.
Liz: I'm a big advocate for bodily autonomy, but also the positive ripple effect of your own personal power in having conversations with people, and using your sphere of influence to spread positivity, and to spread awareness.
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Emily: Broaden your sexual horizons.
Dedeker: Develop a better understanding of yourself.
Emily: Or learn more about non-monogamy.
Jase: Then you've come to the right place. I'm Jase.
Emily: I'm Emily.
Dedeker: I'm Dedeker.
Jase: This is the Multiamory podcast.
[music]
Jase: On this episode of the Multiamory podcast, we're talking about all the things you don't know, you don't know about HIV. To do that, we're talking to special guest Liz Sutherland of Positive Life New South Wales. Liz is an Australian, queer polyamorous, vegan and activist. Her professional work has been focused in the HIV community sector as well as in rape, and domestic violence, and holistic health care management. We're very excited to have her on the show, and with that let's get to the interview.
All right, Liz, thank you so much for joining us. To start out, can you just tell us a little bit about yourself? Quick introduction.
Liz: Yes, sure. Thanks so much for having me. My name is Liz Sutherland, I work for Positive Life in New South Wales which is a Sydney based peer led community organization and NGO in the HIV sector. Before we get started, I just want to quickly say that I'm speaking from a community standpoint not from a medical professional, or HIV clinician standpoint. So none of what I'm saying is advice, so to speak.
Jase: Not medical advice, I get.
Dedeker: No, legally binding advice, okay?
Jase: Got it.
Liz: I also just wanted to put it out there that I don't have a lived experience of HIV. I've worked in the community sector for a number of years, and I work with a lot of amazing people living with HIV. I can't I can't speak from that lived experience standpoint, but I have handled thousands and thousands of people that have been involved in the organization in the sector.
Jase: You were telling me earlier that one of the really cool things about this organization that you work for is that it is peer led.
Liz: Yes, exactly.
Jase: Meaning that it's actually run by people living with HIV, right?
Liz: Right. Yes. So everyone on our board is a person living with HIV. We have a really strong community consultation and engagement framework. Our community basically just leads exactly what they need and want us to do in action, and we do that. A lot of the staff members involved are people living with HIV as well, so it's really person centered.
Jase: Wow. That's very.
Liz: Yes. It's really unique. I mean, there's other peer led orgs all around the world. I've just visited a bunch in Canada which is really cool, but, yes, it's really unique. I think, yes.
Dedeker: Excellent. Can I ask Liz, why was it that has initially drew you to this kind of work?
Liz: Yes. Back in 2014, someone that I loved was diagnosed with HIV. I felt very helpless in that space, and I knee-jerk reactioned into the sector. I'd had a bunch of experience in health care before that, and I wanted to get into the not-for-profit world, and I had experience in rape and domestic violence as well. Yes. I just fit, and I had a really great opportunity come up with my boss Craig who is just the best person that I've ever met.I'm just stretching that out as long as possible even when I'm traveling.
Dedeker: Nice. Excellent. Here you are. We're really happy to have you on the show today because you definitely have such a wealth of knowledge that definitely the two of us do not have. I think actually a lot of people of our generation don't have because I mean-- So we're both Jase and I and also Emily, even though Emily's not here this week. We're all children of the '80s. I think that during the '80s and early '90s all the stories and information about HIV that we grew up with, it was usually like one part horror story and one part morality tale, right?
Liz: Yes. The Grim Reaper.
Dedeker: Because it was usually-- Yes, exactly the Grim Reaper, that's very much the image that sticks in my mind about it. It was often also wrapped up in this very moralistic condemnation of gay men, or of people who were taking injectable drugs, or of people who are sex workers. I think that a lot of people of our generation that all condenses down to just assuming like, "Okay. HIV equals scary, and to be avoided at all cost," and that's where the conversation ends.
Of course, on the show we're always interested in opening up these conversations especially ones around sexual health, and stigma, and things like that. Can you talk to us about some of the most common misconceptions that you're fighting against on a regular basis in this line of work?
Liz: Yes, sure. Firstly I just want to say, I'm in the exact same boat. Before I started in the sector, I knew next to nothing about HIV. I had, I mean-- How much can I swear on the show? I had a fucking shit sexual health education.
Jase: Yes. Go for it.
Liz: We got maybe half a lesson on HIV and it was literally just like, "Don't get it or you'll die." It's not really the reality of what we're facing today. I guess, one of the main things that pops into my head is that HIV is definitely not a death sentence anymore. A lot of people do know that, but it's still in the back of a lot of people's minds.
Also, one of the main things is around the fact that we have it in our heads that it is really about gay and bisexual, and other men who have sex with men, and injecting drug users, and sex workers. We're finding a lot in Western countries that the epidemiology is changing and evolving, so that it's moving proportionally into heterosexual people, women. Historically the burden of HIV infection has disproportionately affected women worldwide, if you're looking at not just the Western countries. Now, it's moving that way as well in the West.
That is something to note is that people assume and risk profile themselves that they're not at risk, or that it's not something that they even need to think about because it's fallen off our radar a little bit.
Dedeker: Right. That makes sense. That's interesting. You're talking about people risk profiling themselves. I think that makes total sense that it's based on just purely what you've been told either by-- insufficient information in your health class, or just from what we get from pop culture, that I think it's so easy for people to paint themselves with a broad or a brush. I think usually to their own detriment because usually people tend to make the assumption of like, "Oh, this just doesn't apply to me because I'm part of X,Y&Z demographic, so I don't even need to worry about it really."
Liz: Yes, exactly. It's that conditioning unconscious bias and stuff. Yes. It's also reinforced by medical practitioners which I'll hope that we'll going to touch on a bit later.
Jase: Yes. We'll hopefully get to that. You were mentioning to us earlier that people assume that they don't know anyone with HIV also, and so people will make jokes about it, or things like that. I was surprised by what you were saying that you actually probably do. It makes a lot of sense now that I think about it, but that hadn't occurred to me before you mentioned that.
Liz: Yes, exactly. I mean, I think there are millions of people worldwide that live with HIV, and you don't get a tattoo on your forehead when you get it. It's one of those things like, it's an invisible infection, you're probably go with one of them. It's something that it doesn't-- it's not an isolated community. They're part of all our communities, they are part of the poly community, the LGBT community, the Kin community. Yes. It's not isolated at all.
Jase: Even Republicans. Got it. Then what about chances of-- What's the right thing to say? Is it catching transacting way--
Dedeker: Transacting?
Liz: Yes, I mean, I normally say transmission, infecting. It is an infection, it's a virus. I mean, we'll get into-- I guess I really want to touch on terminology at some point because there's a lot of misconceptions around that, and confusion around language that we use when we talk about HIV.
Jase: Well, I mean, should we get into some of that then now?
Liz: Yes. If you want.
Dedeker: Yes. I don't know why you're asking me, but yes.
Jase: Let's just start at the beginning. Well, we're not going to-- this whole episode isn't going to be about just all of the different terminology and stuff. Could you give us Some of the like what's the one-on-one, right?
Liz: Sure. I guess one of the things that I see a little bit of is the conflation between HIV and AIDS. Also the fact that there's sometimes confusion around the fact that they're both acronyms. I see typed out online a bit capital A lowercase I-D-S as if it's like a word, right? It doesn't stand for something. Just like total basics, HIV is Human Immunodeficiency Virus, and AIDS is Acquired Immunodeficiency Syndrome. You can have HIV and never progress to an AIDS-defining illness. You can have HIV progressed to AIDS and then bring your health back to HIV again. They're two kind of discrete things along the same palate, I guess.
Jase: Right. HIV is the virus itself.
Liz: Yes.
Jase: Whereas AIDS is like a particular set of conditions.
Liz: Yes. It kind of, yes. Like when you're-- When the virus is in your body and it attacks your immune system, so your cd4 cells and when they get to a certain point down to a certain level, then that's what we call an AIDS-defining illness.
Jase: Got it, okay.
Liz: Yes, and that often comes with a lot of other Cohen multi morbidities is what they're called, which sounds really scary. Just like other things like hypertension, or different cancers, or heart disease, or stuff like that. They're associated with having an AIDS-defining illnesses is this swath of other things.
Jase: Okay. Because they're related to the immune system and how it's functioning.
Liz: Yes, exactly.
Jase: Got it. Are there any other terms that we should know?
Liz: I guess, the main one that comes up is around the person-centered language of talking about people living with HIV. The person comes first, it's a person living with HIV, it's not-- They're not HIV, they're the person first. It's like talking about people with disability. They're not defined by the disability, similarly they're not defined by HIV. That's really important to know.
Dedeker: Right. As you mentioned starting to talk about this like some of the terminology can sound a little bit scary, or a little bit dark, or whatever. However, I don't want to lose sight of the fact that as we mentioned closer to the top of this episode, that this definitely isn't the death sentence that it once was. That there are a lot of options both for prevention and treatment, and turning things around. Can you walk us through some of those things?
Liz: Yes. From back where we started in the '80s, they didn't really have any sort of biomedical intervention that was viable at the time. Now what we have is called combined antiretroviral therapy, commonly known as ART, A-R-T. When you're diagnosed with HIV, you're prescribed a treatment of medication. There's a whole range of different ones depending on the virus that you have, and your biological, physiological makeup. So you take one or a few pills every day.
You can get to the point where the virus is really controlled in your body. It's called undetectable. Basically, the virus is attacked by treatment by the medication, and it gets down so low that when you're tested when the levels of viral load in your body is tested, it is literally undetectable. That's classified as 200 copies per mil in the body, but people are as low as 20 to 50 copies per mil.
Jase and Dedeker: Wow.
Liz: That's I guess one of the other misconceptions is that, when you are undetectable, when the virus is undetectable in your body, it's untranslatable.
Jase: Wait. So this confused me before when you're talking about it, before we recorded. If someone has HIV, and they're taking the ART medication, and they've gotten this down to these undetectable levels. Which things are the myth, and which things is the true thing?
Liz: The truth. The true thing is that, when you're undetectable and they give the disclaimer that you need to be undetectable maintain-- an undetectable viral load for six months and longer than six months, the disclaimer asterisks. That then, you can have condomless, anal sex with someone 10,000 times and you cannot pass on HIV to that person.
Jase: That's the truth thing.
Liz: That's the true thing, right.
Jase: The misconception is the idea that you're always at risk, you're always infectious?
Liz: Correct, yes. Exactly, yes. So that's the myth. I think the thing is that it's so new, this biomedical intervention in the grand scheme of things, is really new. It hasn't really sunk in, but there have been very many studies around the world the, one in Australia called the partners study is yet world renowned. Yes, there's literally been zero cases of transmission in these instances between positive and negative partners with condomless intercourse. It's obviously with the disclaimer that it's-- the maintained undetectable viral load.
Statistically it's very common to be able to get to an undetectable viral load as a person living with HIV. I think in Australia and New South Wales at the moment, it's sitting like 90 something percent of people living with HIV who are diagnosed and on treatment, they're able to maintain an on table viral load.
Dedecker: Wow. That's some really good odds. Oh, my goodness.
Jase: Yes. That's really good. I almost wonder if we could sort of armchair, tablecloth, math. Wait, not tablecloth math, napkin math.
Dedeker: No. Don't write on the tablecloth please.
Jase: If it's a disposable party table clothing?
Dedecker: No. Just get a napkin, cocktail napkin.
Jase: I'll do it on the napkin here. All right. It's on my napkin, I'm writing 10 million times unprotected sex not transmitting HIV. Then I'm looking at my odds of having unprotected sex with someone who either doesn't know they have HIV, or doesn't have it. It almost seems like my odds are better having sex with the person who has HIV and is treating it.
Liz: You're one people that gets there by themselves there, right? That's always that example that I give is, that you're really statistically safer innovative calm is to have condomless intercourse with someone that is positive and they know their status, and they're on treatment undetectable versus someone that has a head in the sand, they've never been tested, they don't know their status. Statistically, yes, it's better odds for you.
Dedeker: I feel that applies to a lot of sexually transmitted infections as well. I feel like that's something we try to drive home on this show as well that, it's yes, you're running a much greater risk by being with someone who doesn't have this channel of communication. Exactly. Like someone who's in denial about this than someone who even if they may be positive or something is on top of it essentially and has knowledge on their side.
Liz: Yes. That's the thing is that a lot of-- I mean, the vast majority of people living with HIV that I know are very engaged in their health. They say their GP is every three months.
Dedeker: Do you guys call GPs in the states?
Liz: It's a family doctor.
Dedeker: We call GP. GP is fine. We'll let it slide.
Jase: We usually just say your doctor.
Liz: Okay, cool. This acronym sooth galore in the HIV sector. I'm just aware of the terminology that I use. Sorry, at any point, just let me know.
Jase: Yes. We'll stop you, if you say something we're like, "What?"
Liz: Cool. I've lost my train of thought now.
Jase: Well, yes. So we're talking about knowing your status and--
Liz: That's right. Engage in their health.
Jase: Right, and being like-- And getting treatment. I think that is so interesting because I remember as a kid in health class, one of the messages they would tell you is to get tested. I was always like, "But why?" The only outcome is bad because now I know, right? Where is like, "That's a very good case for like no." This is exactly why. This is exactly why it's better to know.
Liz: I think the thing is its twofold. It's better for your own health and it's better for your loved ones as well, right? That's I think the message that is getting lost a bit is that, when you're a person living with HIV, it really is to your benefit to get on treatment and to start treatment as early as possible, because as soon as the virus is in your body, it does start doing damage and you can't get it back, you can't claw back the health that you've lost from it. It's easier when you're treated earlier, literally the same day. We're advocating for that in Australia. In our organization, is same day treatment if the person feels ready and is comfortable with their choices, yes.
Dedeker: Wow, amazing. Well, I do want to talk a little bit about prevention, because I've definitely noticed as we're saying earlier because the story has been so wrapped up in like, "Oh, this is just something that like gay men, for instance, need to worry about." I think there's definitely drawbacks from that story being around. However, I think the one positive side is I know that all of my gay male friends are definitely a lot more well versed in prevention methods for avoiding HIV. A lot of my straight friends have no freaking idea. Can you talk to us about, like what are the most common prevention methods that are out there?
Liz: Yes. I guess, one of them that we've touched on is that you equals you, undetectable equals and untransmissible. Basically, what we've said is that, when the virus is controlled in your body, you essentially can't pass it on. That's blood to blood transmission. That's like sexual fluids, mother to child, the whole swath of it. Yes.
One of the other big ones, obviously, it's condoms. We so advocate for condom use. Some of the other biomedical ones are around PrEP and PEP. PrEP is pre-exposure prophylaxis. I generally equiver like this to-- not a word. To the contraceptive pill for women, basically.
You take a pill every day, and it prevents you from getting pregnant. You take a PrEP pill every day, and it prevents you from acquiring HIV. I think similarly with the pill, and what's the ill like 97% or 98% effective, similar odds with the PrEP. Obviously, with all of these prevention methods, people are encouraged to use multiple techniques and multiple methods. PEP is post-exposure prophylaxis. That is a course, it's not only about a month long course, and you have to start it within 72 hours of a risk episode.
Say you're an emergency services worker, and you have a needle stick injury, which by the way, have very low chances of actually acquiring HIV through that method, very low. Say, you know definitively that the person-- that the risk episode occurred with is a personal with HIV. Yes.
Jase: You know that that was a risk.
Liz: Yes. It's a definite risk episode. You can go on PEP, get course of a month, as long as it's within 72 hours. That is basically PrEP, but after the fact.
Dedeker: Got it. I see. Can I ask? Is there anyone in particular that you recommend doing something like taking PrEP?
Liz: In Australia at the moment, the risk profile, the groups. So only recently have we started having Medicare eligibility for PrEP. For, if you're given a script by your doctor, and normally the doctors again, risk profile you. It's around normally gay, bisexual, and other men who have sex with men, sex workers, injecting drug users, people with partners from high prevalence countries, that sort of thing. They're normal populations. If you have a partner, and you know that they're HIV positive, that's obviously a situation where you would consider going on PrEP.
Jase: Right. That make sense. Yes. While we're on this subject, let's move to just transmission in general. This is something that I-- So I actually, this would have been, gosh, like, 13 years ago, I think. I worked for an HIV AIDS awareness, non-profit in Russia, actually. It was cool, and I'm sure that all of my knowledge is super outdated now, because it's like 13 years ago. We were doing like, legislation stuff, but the department that I was in was more media, public relations, public awareness kind of stuff. We did one of those bracelet campaigns like, right after Livestrong, got so popular. We had we had our own (yiddish) of our bracelet. Anyway, not important.
One of the things that we would talk about is just how misinformed the general public was about how you get HIV. I remember one of the statistics that came up from one of the studies that we were reading was about people believing that, they're like, "Oh, well, it's transmitted by blood, so you can get it from a mosquito bite." If a mosquito bit someone with HIV, and then it bit you. There're people who would think you could get it from shaking someone's hand. Which, if we all saw that Tom Hanks movie, what's the one I'm thinking of? The Tom Hanks movie where he has HIV? Remember the one I'm talking about?
Dedeker: The Philadelphia Story?
Jase: Yes.
Dedeker: That one?
Jase: Yes. Philadelphia Story.
Dedeker: I've never seen it. That was purely a shot in the dark.
Jase: Oh, my God. It's so good. At least I remember it being really good when I watched it. Anyway-- but in that, people wouldn't shake his hand if they knew that he had HIV, and stuff like that. Give us some real talk here.
Liz: Still a misconception, right? One story that pops into my head is from my boss, a positive life. He's very add and open about his HIV status. At one point, a couple of years ago, he walked into a pharmacy in Sydney, like, inner city, Sydney, very gay friendly area. He walked up to the counter, was very busy, like, after work hours. He got to the front of the counter, handed in a prescription, not even for HIV medication, for totally different medication, I think headache pills or something.
When your pharmacist asked you, are you on any other medications? She asked it out loud in public. He was open about it, and he was like, yes, HIV medication. He looked around, and literally people like, "huh," away from him, like, stepped away from him as if they could, breathe in the HIV. Just imagine for a second that this is the person that was diagnosed six months ago. They were still dealing with a whole bunch of internalized stigma. They were terrified to tell their parents, they're really ashamed about it. Then that happened like, it just-- it boggles.
Definitely cannot get it from the air or shaking hands with someone. Basically, transmission rate is that it is blood and sexual fluids, and also like, really now, but mother to child transmission. Say, from breastfeeding, for instance. Blood in terms of you have to have a abrasion, it has to be blood to blood, right? If you're sharing needles as injecting drug user, we obviously advocate for self determination inject away, but do it safely, right? Don't share needles that sort of thing. Getting to fits in kids and stuff.
Jase: If someone were to bleed on you, and you are helping. Like someone's bleeding on the street and you're trying to help them.
Liz: If you have abrasions all over your skin and there's a potential for blood to get into your blood system directly, or unto mucous membranes, then that's a potential transmission rate. Yes, like, blood to blood.
Jase: Or just touching blood isn't--
Liz: No. Exactly, yes. You definitely wouldn't get it from that. Again, that then goes back to the fact that, is that person even infectious? What's the viral load at? Even if it is a person with HIV, you have to take that into consideration. Now, it's not just like they have HIV, it is possible to get it from their blood because they might not even be, yes?
Dedeker: Right.
Jase: Right. Like, I want to ask a lot of super technical questions. I know you said right up front, you're not on the medical side of this, you're more on the community side of it. I'd like to get people more of like a realistic sense of, like you mentioned condoms that-- Like questions that people will often have is, oral sex, for example.
Liz: Yes, okay. With oral sex, there are no documented cases of it. As far as I'm aware, like, worldwide. It's technically possible if you have a whole bunch of open sores in your mouth, and you're performing oral sex on someone and sexual fluids come into contact with those open sores, with those abrasions, technically, could be possible. Again, no documented cases. It's really not a thing--
Jase: That was one of the things that that I learned back when I was doing this kind of work too, is just that like, no, actually, that that doesn't happen. So I was just making sure that was still the case.
Liz: Yes.
Jase: What if I wanted to drink someone's blood?
Liz: Bloodplay, right? Okay. We don’t kink shame here. Totally a thing.
Jase: If you don't know, that's fine too.
Dedeker: That's true.
Liz: I'm not sure. I think it has to be a mucous membrane, which they're not in your mouth, right? Mucous membranes are? I don't know.
Jase: I feel like the mouth is in between.
Liz: Yes, I'm not 100% sure. If you were injecting someone else's blood directly into your bloodstream, then yes, that would be a possibility. Dedeker is shaking her head.
Dedeker: We're just getting into all the like really awful situations.
Jase: That's great to know. I think that a lot of people don't realize those things just about like, how can you actually get it? How risky is it to have friends and cuddle with a person with HIV and basically--
Liz: Not at all?
Jase: Not at all.
Liz: Yes. I guess, the main ones, obviously, is anal intercourse, and then vaginal intercourse to an extent, but not quite as much. Then injecting drug like sharing injecting equipment. Yes, those are the main ones, right.
Dedeker: Hey there. We're taking a quick break to talk to you about our Patreon community. I just have to say in a word, our Patreon community is just awesome. We've gotten to meet so many cool people, new listeners, listeners. who've been listening to us from the very beginning and for some reason are still sticking around. It's really just formed into this really awesome community of supportive people who not only support each other, but also support us and support this show so that we can keep doing what it is that we're doing. If you want access to that community, which includes access to things like our private Facebook discussion group, our private discourse forum, our private discord chat, our monthly video discussion groups, things like that. You can go to patreon.com/multiemory and become part of that awesome exclusive secret club community.
Jase: Secret club community.
Dedeker: Yes. I'm going to find new ways to add more and more qualifiers to each time.
Jase: Good. I like that idea. Another thing that would be super awesome is to help us get this word out there to more people. I think especially this episode today is so incredibly important for so many people, regardless of how they're doing their relationships. One way to help get that word out there is to leave us a review on iTunes or on Stitcher and let other people know what it is that you like about this show.
What is the value that you get out of this show, because if there's someone else out there who's thinking about maybe listening, your review might be the thing that resonates with them and makes them give it a try. Just take a couple minutes out of your day, go to iTunes or Stitcher leave us a nice rating and a review, and that will really help other people to find us.
Dedeker: Lastly, our sponsor for this week's episode is Adamandeve.com. If you need anything sexy in your life, I'm talking condoms, or lubricant, or sex toys, or lingerie, or pornography on DVD, if for some reason you still keep a DVD player around just for watching pornography.
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Jase: It lives up to its name, it's multi. Multicodery.
Dedeker: Yes, that's true. It does.
Jase: The Multi code. Fun tidbit about Adamandeve that we haven't talked about in a long time is that the business actually was started as a male or way of ordering condoms because that originally-- I think it was actually illegal when the business started, so it was something you could only buy at a pharmacy. That prevented a lot of people from actually buying condoms who would benefit from having safer sex.
So they created this mail order catalog to be able to do that more privately without having to go to the local pharmacy and convince them to sell you condoms. It's actually on topic for our topic today, talking about sexual health.
Dedeker: Excellent.
Jase: All right. With that, let's get back to the episode.
Dedeker: I feel like we've definitely had a recurring theme here, talking about misconceptions, and separating stigma from what facts are and what the truth is, and what the myth is and stuff like that. When you first reached out to you used this really beautiful turn of phrase, which is, you mentioned moving people from-- or turning conditioned ignorance into conscious awareness.
Doing the work that you do in community, I think especially working with people who are not HIV positive like the community around them, what have you seen the benefits being of people actually learning about this even if they themselves aren't positive, or don't feel like it affects them directly?
Liz: I guess, that's one of the things that I find the majority of people involved in the activism space, or any off-center community, is more in tune with-- is breaking down those walls of ingrained ignorance and our conditioning by society to getting to a point of consciousness and more awareness. I think that then leads pretty naturally down into consideration and compassion for other people.
I think that in any form of activism, that has a flowing effect not only for yourself, but for everyone around you. For instance, we've really as a society moved away from things like using gay as a synonym for bad. We're moving away from rape jokes, for instance, because you never know what the lived experiences around you.
I think that that's hopefully moving into the direction and in the same way for people living with HIV. Is just more of an understanding that we don't know what we don't know. Once you have that conscious awareness, and then you're like, "Oh. Shitlike, okay. The HIV is something that I don't know about. Maybe I can inform myself, maybe I can listen to this podcast, or do a bit of research or go into a website, do a bit of digging."
Then that to me empowers yourself. I'm a big advocate for bodily autonomy which hopefully I can get to it in a little bit. Also the positive ripple effect of your own personal power in having conversations with people, and using your sphere of influence to spread positivity, and to spread awareness among different people. In any form of activism, but I'm super passionate about the HIV space obviously.
Dedeker: No. That's really beautiful. I think it makes so much sense that it seems like all of this work, whether it's about HIV or get any other marginalized group or human condition that it is really about humanizing and normalizing. Putting a face and being able to, I guess, make it easier for there to be compassion and empathy and understanding and things like that. Again, a few people are operating under the assumption that like, "I don't know anyone with HIV," it's hard to have empathy, but being able to shine a light on the fact that like, "No, you definitely do." I think it really opens up that channel a lot more.
Liz: Definitely.
Jase: The people you do know who have it don't feel like they can tell you because you don't think you know anyone who has it, right?
Dedeker: Right.
Jase: It's like, you start to break that cycle. I just have a quick question for you about what this has been in Australia, specifically. I know that for us in the United States, it was like when this was first coming about, it was this thing where it's only gay men, and so it was easy for people to go like, "Well, whatever, it serves them right," or it's this other community, it's this-
Liz: Very judgmental.
Jase: -others. Then Magic Johnson was diagnosed with HIV. He was a celebrity, he was a basketball player. All of a sudden, there was a face for it. It became real. I know that in certain other countries, like when I was working in Russia, there wasn't anything like that. There, the population that started contracting at first was intravenous drug users. I think even more so than gay man, it was like, "Well, judge, Judge, judge. That's your own problem." I was just curious, in Australia, was that a struggle not having a face for it or?
Liz: I guess. I think so. Australia is not influenced by American pop culture.
Jase: It seem so.
Liz: We just get the trickle down of whatever happens for you guys, really. It has historically disproportionately affected gay men or other men who have sex with men, but it's changing. All of the stuff that we've spoken about, all of the different prevention techniques and how engaged the community is that has historically been affected. They've gotten on that bandwagon. That's why the lights of going down in that space because they're protecting themselves and they're protecting each other, and they're really engaging in their health. Then I guess it's going into the other-- the space around heterosexual people and women, and they are all right.
Jase: Sure.
Dedeker: Definitely.
Liz: One of the big driving forces around this in Western countries at the moment, is around the fact that a lot of people that are living with HIV that are heterosexual or that are women, by the time they're diagnosed with HIV, they've generally been living with it for four more years. Which means that they have had the virus in their system for X amount of time, it's been replicating in their body so they're getting sicker and sicker.
That means that they may not have been aware of the fact that they have been passing it on to other people or the partners and loved ones in their lives. This problematic terminology that we use in the sector called late presenters which I hate, but essentially what it means is that, the sector and the medical professionals say, they've presented to us late.
Jase: They've presented themselves to us pretty late, not the like symptoms have presented late, but they--
Liz: They've present, yes, right.
Jase: Wow. That's fuck up.
Liz: It's putting the judgment back on the--
Dedeker: It's there-- seems like their behavior or their choices.
Liz: However, what we see actually is that they present again and again to medical practitioners, but the question is never asked, "Could this be HIV?" Because there's this risk profiling that happens for medical practitioners a lot of the time that-- I am a big advocate for practicing what I preach. I get full sexual health screen every six months. My regular doctor was on holidays the last time that I got this done, and my medicaal replacement doctor, I went in and I was like, "Hey, I need this sexual health screen. I want the full screen including the hepatitis alphabet, I want HIV, I want whole thing."
She looked at me and said, "HIV? Why would you need that? You don't need that test." I was like, "Okay, first of all, I work in a sector." I went on my blurb. She was like, "Oh, you work in a sector, so you work with people living with HIV. Have you eaten any food that anyone with HIV has prepared for you? I was shocked. This is an Inner City, Sydney.
Jase: Did you call your gang of coworkers? To be like, "We need to come educate this clinic."
Liz: No. I did it myself. It was one of those things where there's still a lot of misconception around medical practitioners as well. The thing is, you can't know everything. The general practitioners, and it's just a case of trying to up skill everyone in the community including medical practitioners. I'm trying not to value judgment on that as well, but, yes. I guess what I mean---
Dedeker: It totally makes sense because I think we've already statistically seen. There have been studies performed. I don't know if this is been worldwide, at least in the states, that both women and people of color have to provide the same complaint to a doctor many more times than, say, a white man does, before the doctor will actually take them seriously, or order the test that they want, or give them the medication that they need or actually diagnose what they have.
That there is this undercurrent of dismissing or devaluing the opinions of someone who is a woman, or a person of color, at least within the medical sector, so it makes total sense-
Liz: Have only experience of pain and--
Dedeker: If that would be the result is that, it's not that someone presents multiple times, but then it's the doctor who finally decides like, "Oh, they presented late."
Liz: Yes, exactly.
Dedeker: So fascinating.
LIz: Even none HIV related. Maybe six or seven years ago, I was on this medication for my arthritis and it was immunosuppressant. I was just sick constantly. I was sick for about four or five months, and I kept going to a doctor again and again. Like, "What is wrong with me?" Asking for these tests and they just kept being like, "Oh, it's probably the flu, just semi virus and generic, Antibiotics, right?"
Finally they did some tests and turns out that I'd had pneumonia for the full four months. I know, right? Breaking three ribs from coughing like it will destroy it. It was so intense, but they didn't believe me. They didn't believe that my pain was like X. They just assumed that it was something else, and that's a micro level, like such a tiny thing, but it happens all the time.
Dedeker: Wow. I guess that's the same because I feel like I've seen people come up against this as well, not just with HIV, but with particularly getting of more complete panel for any sexual health testing. Even with HSV, that a lot of doctors will just straight up refuse, "Unless you have some really concrete tangible reason why I should be testing you."
What would you suggest to people, when they're in that situation of a doctor's trying to tell them, "Oh, you don't need an HIV test or you don't any HIV test." I think so many people are inclined to just be like, "Oh, doctor says so. Okay. I don't really have space to argue."
Liz: That's the thing. That's like they're holding that power over us. I guess that's the first thing that I want to touch on. The fact that in life, the only thing that we truly are in, is our bodies. Nothing else. The thing that we have autonomy and power over is our body. So much of the time especially if there's inter-sectional factors at play. Like, being a woman or being a person of color or in any other marginalized group besides straight likes this man That power is so often wrestled from us.
It's finding a way to bring back that power and take control of your health and your bodily autonomy. It really is a personal thing. I can't give one specific answer of, "Say this thing and it's going to magically make your doctor do you this thing." It's finding a doctor that is willing to listen to you and is willing to be open to you being the expert in your own health. So much of the medical professional sector is swept away in, "They're the experts." Yes, we're the experts in ourselves, and in our own bodies, and in our own health.
I guess, it's just in terms of being informed, being aware of what-- If you got a test six months ago, go to your cupboard and find the paperwork and see the names of what you were tested for. If you weren't tested for HIV, if you weren't tested for herpes, if you weren't tested for HSV, whatever it is, go fetch your doctor and just say like, "Hey look. This is what I tested for last time." Write down, "This is what I want to be tested for this time please." See if that works, hopefully it does.
Dedeker: Right.
Jase: I suppose it wouldn't hurt to maybe lie a little bit, that you're at a higher risk. If you're in a situation where you can't just change doctors, because I realize that's more complicated than it should be for a lot of people. Even if you're a woman to be like, "Oh, well. Some of my male partners have sex with men." That would probably get you the test, right?
Dedeker: Yes. I've heard from some people that they use the trick of like, if they ask for a particular test and their doctor says no. That then they'll ask the doctor like, "Okay, will you please write down in my chart, patient requested such and such tests. Doctor denied it?"
Liz: I like that.
Dedeker: "Will you write it down?" Often they'll be like, "Okay, we'll give you the test."
Liz: Love it.
Dedeker: Because they don't want to be caught later on. If you did test positive later on or something. Exactly. They don't want that documented that they denied you testing for it.
Liz: I like that, I'm going to use that.
Dedeker: It's so weird. I feels like we shouldn't have to be tricky and manipulative, but if that sort of what works, that's what works.
Liz: I think also we have a bit of power and leeway to educate medical professionals too. They're people as well. Generally speaking, people are pretty amenable to growing, and learning, and changing, and informing themselves. I am hopeful that people just start operating from that level of, they just don't know, or they've had information.
They went to medical school 20 years ago and they just haven't had a professional development course around HIV. They have so many PDDs on so many different topics, they can't know everything. Maybe, it's an opportunity to also, first off all, use your sphere of influence.
Dedeker: That makes sense. I like that idea of being able to empower people even when they're entering into this dynamic. That historically, we're so used to being so imbalanced. Of like, the doctor knowing everything and us knowing nothing. I think it is good to carry that sense of empowerment into a lot of medical interactions.
Jase: That's fantastic. So, as we're coming to the end here, what would be the main takeaways that you would wish that everyone listening would have and that everyone else in the world will then get from them? What's the knowledge? What are the main takeaways you want everyone in the world to have?
Liz: Takeaways. I would say, that everything starts from that consciousness level. Become conscious of the things that you don't know, know your status, get tested frequently. If you do receive a diagnosis of HIV, get on treatment and remain engaged in your health and treat consistently. Regardless of whether you have a HIV or not. Inform yourself really, like, empower yourself with knowledge because knowledge is power.
then have conversation., I have this T-shirt that I wear all the time back in Sydney that literally just says, "HIV." On the front of it. The looks that I get sometimes walking on the street with that thing on. It started some really interesting conversations. That's not what everyone is going to be comfortable doing. Using whatever you feel comfortable with, just have conversations with the people in your life like your friends, your parents, your family, your partners, whatever it is.
Jase: The one I always recommend to listeners of our show is my favorite conversation starter is to go, "I was listening to this great podcast the other day, and they did this episode about HIV, it was fascinating. I learned all the stuff I didn't know." Then , you're not the one having to come up with some reason why, like "I really want to talk to you about this thing." You just feel like-- We do that, like to say, "I was listening to this thing on the radio, or this thing on TV." Use this podcast as that.
Liz: It doesn't have to be your personal story there, that's the thing. You don't have to have breast cancer to be interested in breast cancer prevention or talking about. It's misconception that you have to have this thing to be interested in this thing. That's just not the case at all, I don't think.
Jase: Well, can you please tell us where can people find out more about this work that you do and more about you?
Liz: The organization that I work for is, Positive Life New South Wales, we're Sydney based. I guess, you can just Google Positive Life New South Wales. I think it's positivelifensw.org.au maybe?
Jase: I think something like that, yes.
Liz: Something like that. Just Google it. There's Instagram, and Twitter, and Facebook for Positive Life New South Wales, but really most places around the world, particularly most countries have their own peer-led, like pulse organization.
Jase: Is that the thing to search for is peer-led?
Liz: I'm a big fan of the peer-led space because I think there's a lot of power in the meaningful, and greater involvement and engagement of people living with HIV, and leading that space for themselves. That's what I would aim for, but there's a lot of non-peer-led stuff as well that has really good content online, and a lot of support services, and networks, and stuff as well.
Jase: Got it. Was there anything else that you wanted to share with our listeners before you go?
Liz: One thing is that we've got World AIDS Day coming up on December 1st every year. That's a really good way to get involved, to Google events that are happening around Worlds AIDS Day in your local area. The other thing is that for Australian listeners, you may not be aware, but the Australian government is bringing out a My Health Record system. It is fairly problematic in a few different ways, which I won't be getting to, but there's a lot of information online, particularly on Positive Life website. We've made a number of submissions about that into the My Health Record system.
I'm pretty sure that opt-out date has already passed, but there are ways that you can place restrictions on your My Health Record because everyone now in Australia will have a record that is quite accessible and public with all of your health information in it in Australia. Just inform yourself about with the My Health Record System is, and what information that is on your health that the government and a lot of people have access to.
Jase: Thank you so much for joining us today, Liz.
Liz: Thanks for having me.
Jase: Thank you all so much for joining us. I feel like this was a particularly valuable and important episode. I know I learned a ton from this episode. I'm sure that a lot of you did as well. We're really curious to find out what that is. What surprised you in this episode? What are some things that you've learned? What are some things you already did know that you are really happy or getting shared with more people? Is there anything else you want to add to the conversation?
The best place that you can share those thoughts with other listeners is on this episode's discussion thread, in our private Facebook, discourse and discord forums. You can get access to these groups and join our exclusive community by going to patreon.com/multiamory. In addition, you can share with us publicly on Twitter, Facebook or Instagram. You can email us at info@multiamory.com, leave us a voicemail at 678MULTI05 or you can leave us a voice message on Facebook. Multiamory is created and produced by Emily Matlack, Dedeker Winston and me, Jase Lindgren.
Our episodes are edited by Mauricio Balvanera. Our social media wizard is Will McMillan. Our theme song is, Forms I know I did by Josh and Anand from the Fractal Cave EP. The full transcript is available on this episode's page on multiamory.com.
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Kat: This is Kat Stark, author of Yelling In Pasties: The West Coast Confessions of an Anxious Slut, and co-host of the on The West Coast podcast. You're listening to a Swingset podcast on Swingset.FM.