On The Couch with Positive Speakers Bureau

[00:00:00] Jennifer Farinella: Hello and welcome to an episode of On The Couch, where we collaborate with experts, practitioners, authors, advocates, and influencers to explore current social themes, sex positive topics, and share stories and insights that matter.

This podcast was recorded on Aboriginal Country. We Acknowledge the traditional custodians of the lands that were never ceded on which we live, work, and record upon. We pay our respects to elders past and present and to those who may be visiting our website or listening to our podcasts today.

While listening, we encourage you to practice good self care. Check the show notes for content details and references. Wherever you are, whatever you're doing, enjoy this episode of On The Couch.

[00:00:47] Naomi Viret: I'm very excited to be joined by a fantastic panel it is my absolute pleasure to welcome Naomi Hoffman, Tasha and Mel from Positive Speakers Bureau as we discuss women and HIV. So.

Tasha has been a speaker with the Positive Speakers Bureau since 2015 and is

A director of Positive Life NSW Board.

[00:01:10] Tasha: Yes, this will be my last year after several years of doing it. I'm just going to have a little bit of a break.

[00:01:17] Naomi Viret: Excellent. Tasha brings a unique perspective on the challenges and lived experience of someone being both transgender and living with HIV.

Her background is in education with 14 years experience teaching senior high school in both Australia and overseas. She has been HIV positive since 2008. Welcome Tasha.

Melissa. Mel is a young woman living with HIV of African descent who is on the board at Positive Life New South Wales as well as being a speaker with Positive Life Speakers Bureau. She is passionate about her family and hopes to one day leave an impact behind for women living with HIV. Welcome Mel.

And we have Naomi Hoffman or Nay. Nay is a proud Kamilaroi woman and holds the position of Clinical Nurse Consultant for the Illawarra Shoalhaven Local Health District specialising in sexual health and HIV. She helps coordinate the care for over 175 people living with HIV between Bulli and Ulladulla, conducting sexually transmitted infection testing and treatment as well as HIV testing and contact tracing. Nay also works to educate the wider community to remove stigma that's associated with HIV.

So before we get into talking about your work and experiences, I would like to hear your own individual stories. Um, and allow you this time and opportunity to open up and share your connection to HIV in a way that you feel comfortable to do so.

We often refer to this story sharing and this collective discussion as talking about our coordinates of belonging. So the coordinates of belonging are a sense of who we are as an individual, what makes us us, and the journeys that has led us to where we are today. To get a full understanding of this concept, we do invite listeners, if you haven't already, to go back and listen to our episode with Danielle Mae Kaplan um, on connection to community.

Um, but yeah, I'd love to first start with yourself, Tash.

[00:03:20] Tasha: Um, okay. Um, I, I, before ending up in Sydney, I, I'm originally from Perth, but for 12 years, I worked in a Catholic school in Thailand. Um, you know, I only planned on going there for six months and after the, um, honeymoon period was over. I did meet someone, we settled down together and we had a nice probably probably together for seven years, uh, one, one morning I, uh, we woke up and my other half, I was just thought it was another hangover because, you know, there's quite a big drinking culture in Thailand and you know, I had to get ready and go to work. And so I got dressed and off I went and when I got home, she was still in bed. Anyway, this day one went to day two and day three, shes not doing much and I was just shirty because I just thought what's going on here. Um, it was that following morning I woke up and it looked like she was rather small in stature before that, but looked like she'd lost half her body weight overnight. Um, I was aware, this is outside of Bangkok, that there was, uh, quite a bit of HIV and, uh, around, uh, But, um, just one look at her and I just sort of realized, you know, I knew what it was. And, of course, uh, Um, if she was going to be HIV positive, it was going to be a given that I was going to be positive too. Uh, cut a long story short, uh, I took her to the local hospital, came back, um, and we both actually missed HIV completely and gone to late stage of having AIDS.

I remember hearing off someone once that, you know, AIDS, as opposed to HIV, was referred to as the designer disease and, you know, this I found to be the case because it tend to attack your vulnerabilities for my other half it attacked her kidneys and liver, for me, it attacked my lungs. So we're at a stage where. No hospital in Bangkok's surrounding area would take her in. So I reluctantly sent her back to her hometown, northeast of Thailand, where she went straight into hospital, and I was in a hospital on, uh, outskirts of Bangkok. Um, both of us in intensive care, um, dying of AIDS related cormobidities Uh, unlike today, where, you know, the moment you get a diagnosis, you go straight on to treatment. that wasn't to be the case. Uh, within three months, my other half had died.

I was released from hospital. My lungs, are, still are scarred from pneumococcal pneumonia. And, and with that, I also had shingles. Um, I had brain encephalitis and my weight had dropped to 43 kilos at the time as well, so I had to learn to walk again. Um, at that point I was given three months to live and still I wasn't on treatment by the way.

Uh, I was getting associated things with just weird rashes, sores, shingles. Shingles is very painful. And when you're given that time out, you just go off and do all the things that you've always wanted to do. And that's what I did. Three months came, came along.

Um, I learned to walk in, I couldn't stand being at home anymore. So I, I went back on light duties at work, only sitting in the office. Um, and then that's right I finally started on medication. Now, that time in 2008, they were not, we weren't getting the good meds in Thailand still. And, I was on, remember AZT

[00:07:47] Naomi Viret: mm-Hmm. .

[00:07:49] Tasha: Yeah, that's what I was on. And the side effects were horrific. And basically any instructions I got with the medication was, here, take this.

Um, and so I, you know, I had to do a lot of research online to find out what side effects were, and there were some shocking side effects. Um, gradually, I got better. I ended up finding out that in town, the Red Cross actually ran a group for expats that were HIV positive living in Thailand. And it wasn't until I came back to Australia that I realized, you know, Albion Centre here in Surry Hills?

[00:08:29] Naomi Viret: Yeah.

[00:08:30] Tasha: Yeah. They support the, the program in Bangkok.

And it's like, you know, when I came back here, I went back to Perth just expecting I was going to go back into secondary high school teaching. Well, that never happened. But then I, you know, I've ended up here and then I realized the association with, the Bangkok group and they put me on other newer, uh, anti retros at the time I I sort of continued on, um, I, I, even, even when my other half died, I was still not well enough to travel to, um, her internment in the, um temple up in northeast of Thailand.

So, you know, I didn't actually get to go up and see her or any of her family for, probably five months afterwards, and I did that, and I, you know, I got better and fitter and, and I just continued on it. But, you know, jobs and careers like everything in life, you know that they have a life of their own, it comes time to move on. So I just I did a reconnaissance trip back here. I just thought I'd slip back into a teaching job in Perth. And if that didn't work out, I'd found out that I qualified, this is 2012 now, that I qualified for the DSP should, you know, the proverbial hit the fan, um, got rid of what I didn't need, packed up into a shipping container, what I wanted to keep and bring back and, uh, arrived back in Perth and life went south.

My family actually moved to Melbourne when I was, when I was a lot younger. And You know, when, when you are diagnosed with HIV I, this is how I looked at it. I had a priority list of people I would tell from who, who do I need to tell? Who, who do I go down the pecking order and leave it till last?

And, and the strange thing I found out about was my immediate family, brother and sister. Well, they just thought the whole transgender thing and the HIV, I just, done it all just to upset their lives.

So yeah, that's a bad period and you sort of wonder, I had a little bit of a homeless stretch in Melbourne for a while too and I'm just seeing, I've got, you know, qualifications, really good ones, and I just can't get a teaching gig anyway. It was always between the man, the woman, and moi. Your, your qualifications are great, but I, and I always knew what the but was all about.

[00:11:06] Naomi Viret: Hmm

[00:11:07] Tasha: Uh, I ended up hooking up with a, another trans woman from the corporate world. She, she had a place here in Sydney. We struck up a relationship online and ended up moving up here and into her place. And that was good, that lasted for about three years. And 2014, uh, I moved into my, my, my little abode here in Surry Hills.

Um, I, I can be guaranteed the wheels on the trolley health buys will, will, will get wobbly once a year. You know, I've had viral brain infections, just, just weird, weird things happen. Um, I found Pos Life New South Wales, they must have seen something in me and got me brought up to speed for doing these speaking gigs.

You know, I still love going out to the schools and getting up in in front of the kids and their supervising teachers go, look, if they're going to give you any hassles, Let us know and I go, I've got this

[00:12:10] Naomi Viret: Qualified teacher in the house.

[00:12:11] Tasha: Yeah, no, I've still, I've still got the class management down pat.

Um, so I, I really enjoy them. I've sort of carved out a nice little niche for me here, like there was a trans clinic established in, Albion Centre T.

[00:12:26] Naomi Viret: T150?

[00:12:28] Tasha: That's the one. Yes. Um, yeah, and I was on the steering committee setting that up. And it was a woman, Bella Busby, she ran the first trans study out of Pos Life as well. And I was well involved with that because, you know, I've done, uh, co presentations with ACON and people are blurting out numbers and I go, there isn't any numbers? there isn't any stats? Of course, I get a reply, yes, there are and I go, well, point me to them or send them to me. Of course, there wasn't, never was until several years ago.

Um, and, you know, my life has revolved around HIV and one of the things about it was, you know, uh, the fact that I'm still here is I find just quite amazing at all. I always thought of HIV being positive, you know, I wouldn't wish it on my dead enemy and that's part of the reason I've always chosen to do these talks just so I can get someone to second guess, their behavior in the bedroom. And some of the, some of the comments and views I've heard from people just, they still make my head spin when I hear, hear, hear some of the things said.

And I was quite happy being celibate for seven years, because of the fact that, um, you know, I wasn't undetectable. And then I become undetectable. I think it was 2017, 2018. Did that put a spanner in the works. So that just, you know, open up vistas of life that I had been closed to me by choice for several years.

And that was another adjustment. But, you know, I sort of. I'm undetectable, um, I have an okay sex life, you know, I'm happily single because I just think that'd be too damn difficult for anyone to live with, to be honest, and, you know, life's pretty good. I think I've adapted to it quite well.

In reference to, disclosing my status to people. The last person I told was one of my ex teaching colleague in Perth. He's he's ex army and he's pretty rough. So and and when I told him he just looked at me and went so you're a Tranny and you got AIDS. I went uh well I wouldn't put it like that but yeah and he went yeah okay and it just you know it just sort of goes to show you know, you just don't know what people's reactions are going to be.

I think I've only ever had one bad reaction. And, um, oh, the most positive reaction, I think I think I ever did. Well, I appeared on an episode of that You Can't Ask That on ABC TV.

Um, it was a leap of faith on my part, and I always know when it's been repeated back on TV because inevitably I'll be getting off the tram in town or something and someone will just come up to me and go, hey, what's that? Is that you?

And I've never had a bad reaction. And it just goes to show my immediate family problematic, complete strangers, not at all.

[00:15:41] Naomi Viret: Thank you so much, Tasha. We really appreciate you sharing that story and journey. And, you know, the fact that you're out there advocating, but at the heart of it all, you just want to educate and empower others. I think that's incredibly strong and important. And we thank you for the work that you're doing in this space.

 Mel, I'd like to hand over to you. Would you like to share a little bit of your story with us?

[00:16:04] Mel: Sure. Thank you so much for having me. So my name's Mel, as Naomi said before, I'm of African descent. Um, I've been living in Australia for 11 years and I was diagnosed with living with HIV, 10 years ago.

So that could have been devastating, but I think I've turned it into a positive. Um, when I first was diagnosed, I thought my life was over, as maybe many people go through those kind of emotions when they told about something like this. So when the doctor told me, I thought, Oh my gosh, I've got two young kids, I'm in Australia. I've only been here for a year. What am I going to do? Um, so my first thought was like, yeah, it's done. I've got nothing else to live for, but I turned it into a positive. So, um, as you mentioned before, I am a speaker, I'm on the Positive Life Speakers Bureau with Positive Life New South Wales.

Um, and I'm also like Tash on the board. So this is my second year on the board. And I think it's important to have somebody like myself on the board. And, um, like you mentioned in my bio, I'd like to make a difference with especially young women living with HIV, especially heterosexual women and beautiful black women, because I don't see or think there's a lot of representation of us black women out there.

So through these speaking engagements, I'm, I'm hoping that I can touch at least just one person from the CALD community. Um, but my story it really started 10 years ago in Australia with my, well, my HIV journey. Um, I remember feeling unwell, and thought, okay, I don't feel really well, I feel like I've been sick for a while I'll just go into a local GP in the city. I worked in Sydney CBD at the time. I thought I'll just go in and let this doctor, random doctor, know I'm not feeling good. And I just wanted her to do some testing. She asked me the regular questions, you know, family history and so on. What are you experiencing?

And I told her what I was feeling, at the time I was feeling, I felt like I had fevers, I had ulcers in the mouth, um, all those different things that you read about that most people with HIV have in the beginning. So, never once did she talk about it in the beginning. It was, what's your family history? So you spoke about diabetes. How are you feeling? Da da da da da da. Then she spoke about how she wanted to do some tests. So she said, I'll do, we'll do a full body, uh, full blood work. We'll do some urine tests. Have you had unprotected sex? And I said, yeah, I have. She's like, yep, we'll do a STD check. Again at this point, no HIV was brought up. Also, I will add that I was very oblivious to even maybe having it. I thought, Oh, it won't be me. I'm a young girl, like can't happen to me. No way. No, no, no, no. I'm supposed to be educated in it. So that's, it's not going to happen to me, but I didn't give it one thought though.

So she said all the tests she was going to do. I told her how I was feeling, went through all the motions of getting medicare da, da, da, da. And just as I was getting up out of my seat to go out the door and, and, you know, thank her she said, Oh, um, by the way, do you want me to throw in a hepatitis and HIV test for you?

Just like, oh, you know, nothing's going to happen, but I'll throw it in there like a lucky dip. Um, and I again, didn't think anything of it and said, yeah, sure. I mean, you're doing, you have my blood anyway, go for it. Um, great, walked out of the doctor's surgery, still not feeling really well, but didn't even think about the fact that she asked me I wanted to do the test and that I agreed to it.

Went about my business. A couple of days later, I got a call from the doctor saying, I received your test results for everything. However, one of your test results has come back as inconclusive or just not, not, we're not really sure what's happening with it.

I said, which one is it for? And the first thing I thought was like, oh my gosh, she's about to tell me I'm pregnant. This has happened to me before. The worst in my head was that I was pregnant, not that I was going to be HIV positive. But then she had said, um, look, it's your HIV test. It's come back a bit inconclusive.

We're just going to run a few more tests. And I didn't know what that meant. And I was like, Oh, okay. Do I need to be concerned? She said, no, no need to be concerned. I see this a lot. It's probably going to be negative. Her key words was it was probably going to be negative. You trust doctors. Um, and I left that conversation like, okay, cool, she's a doctor. I'm going to trust her, but obviously very nervous as well. Um, so she said, I'll call you back once we have all the results, which would have included the HIV result. Anyway, what about my next few days. And then I got a phone call from her again, two days later. Um, we need you to come into the office.

Now, my first reaction was like. Again, honestly, she's probably going to tell me they found out I'm pregnant or something's going on here. Cause the reason why I go to that is like, I've had, I've got two kids and every time I've gone to the doctor, it's like, Oh, you're pregnant. So there's a bit of a backstory with that.

But I thought, Oh my gosh, she's about to tell me I'm having another baby in Australia. And I said, I pleaded with her and I said, I'm at work. Is there any way you can give me the results over the phone? This was before COVID where you couldn't actually get results over the phone.

And I said, please, I, I am at work. Is there any way you can just tell me I'll pop into a quiet room? You don't just please give me the results, whatever you need to tell me. No, no, no. I have to see you in person. Okay. That's fine. I said to my manager, I need to go into the doctor. It's just around the corner from where I worked at the time in the city.

I remember going into her, uh, her room, um, she sat me down, and she went through all the results and in my head, I was like, just cut to the chase, please. She's like, you don't have diabetes, your thyroid is fine, your iron is great, you have no chlamydia, blah, blah, blah, but I am diagnosing you with HIV. So you are HIV positive.

And I think my reaction was like, no, no, no, no, no, no, no, no, no, no. Check your records. That's not me. And she said, yes, it's you. And I just remember feeling really numb. I think I would, I had young knees back then. I dropped to my knees and I was just crying and sobbing just like, oh my word, my life is over.

That's what I said before. I thought, oh my gosh. There's nothing else for me in this world, HIV. Oh my gosh, it's done. But then I pulled myself up and she said to me, um, you know, I'm going to refer you to St. Vincent's hospital, uh, you'll be fine. Don't worry. And that was it. Okay. And I left thinking, okay, great I'm going to be referred to a specialist, but there was no real empathy from that doctor, what I remember from that conversation. There was no, you know, there's foundations out there or people out there that will be able to support you and this is the reason why you're going to live a long life.

We've got medications available now. You know, it's not like back in the day, there was no education for me at this point. And she had a really vulnerable woman in me, you know, crying out like, tell me I'm going to be okay. And her only phrase was, you're going to be okay, I'm referring you to IBAC, you know, um, at St. Vincent's next, next, patient, please.

So there was a missed opportunity there, but, um, I remember going home. I told my family straight away. We're a very close family. My parents were very supportive. Um, I then seen my specialist, I think a week later and I started my medication.

I then started seeing a psychologist as well. And I started feeling like, okay, life is going to be good. Cause that's when I, I then got all my, um, education and support as well through my specialist and a psychologist. Um, I was told, you know, about all the things I needed to know, all my questions were addressed and then about, I want to say about nine months later, roughly, I was then told that I was undetectable.

And just like Tash, when I found that out, at first I was like, what is that? But then I was like, whoa. This is a game changer for me. I'm going to live a long life. And not only that, I'm going to be able to see my kids grow up. I might be able to be, you know, a support for somebody else out there one day.

So that's when I really started living. I want to say, cause before that, I was just like, no, I can't do this. So, um, In the last few years, I've really turned it into a positive, I believe, through my speaking and being on the board, like I mentioned before, and I'm also a member of Positive Life and I think the sense of community that Positive Life brings me is unreal. I'm so blessed to have found what I call my tribe in Positive Life. Um, so yeah, that's a little bit about my story and happy to share a little bit more later on.

[00:23:55] Naomi Viret: Fantastic. Thank you so much, Mel. Really appreciate it. And the fact that you're both on the board just really speaks volumes to how, as you've said, you're taking that situation where both of you have legitimately feared for your life and you're like, I'm still here. I'm still fighting and I'm going to fight really hard to advocate. So thank you both so much.

Nay, over to you. Just from that clinical perspective, we know that you've been working with HIV positive clients for well over a decade now. Do you have anything else that you would like to add or let us know about your experience in the field?

[00:24:25] Naomi Hoffman: Yeah, sure. So, uh, yeah, you're right, Naomi. I sort of come from that clinical perspective. I was drawn to HIV and sexual health nursing as I was able to spend time with my patients, like actually getting to know them, building a rapport, building a relationship with them, which is very different to hospital nursing.

And then when I got there and I saw how so many of my patients were from minorities or socially ostracized groups, I found it was really rewarding for me personally to be able to provide a safe space for them to come and get care. Um, and I loved getting to know all my patients and I've stayed in it ever since.

 So in terms of my role, it's, it's a lot of support, testing, treatment, discussing treatment options with people, some injectable HIV treatment administration. I also support women through antenatal appointments, if they want me to attend with them, sometimes they're a bit nervous about that experience.

So I've done that as well, I also provide a bit of education on HIV to other clinicians like hospital staff. Um, I've done a couple of visits to aged care facilities, if they take on somebody in the aged care facility that's living with HIV and they don't really know anything about it, I've gone out and done a bit of education.

But I've also seen the cultural challenges associated with HIV for my Aboriginal community. And whilst the current rates aren't particularly higher for Aboriginal people living with HIV, I find they experience more challenges with staying connected to care, dealing with that cultural stigma. So I'm very passionate about, HIV services providing the best culturally appropriate care for Aboriginal people and also hoping to spread that word to other HIV services about using different ways of care. We don't always have to use the western model of health care. We can always be flexible.

[00:26:11] Naomi Viret: Thank you.

It is sort of hard to know where to begin, but I think starting with some data is a really good discussion point.

I do want to say that in today's discussion, when we refer to women and HIV, we are talking inclusively of trans women and persons with a uterus, but as you will learn, the data is not as inclusive and the data is not necessarily indicative of the wider inclusivity, and we need to be mindful of that when talking about data, we can't rely on data to provide us with 100 percent of the painted picture when it comes to women living with HIV in Australia.

I do have some data from NAPWHA which is the National Advocacy group of People Living with HIV AIDS and so they suggest that there's approximately 3, 000 women living with HIV in Australia which makes up roughly 10 percent of people living with HIV in Australia.

And predominantly in Australia it is men who have sex with men. This is not the story globally, however. Globally, worldwide, there are more women and children living with HIV and I think that often we forget that, and that's why we did want to have a focus of women and HIV for this year, because the same story isn't here in Australia as it is globally.

So, it's also estimated there's probably another four to five hundred more women living with HIV who are currently undiagnosed. So you've already touched on a little bit of this, but in terms of the data, like what are the issues or limitations in collecting that data? What assumptions are being made by people in the research or trying to get the data around women living with HIV?

[00:27:43] Tasha: I think Mel nailed it on the head earlier on. The assumption being that, if you're a straight woman going in for a test, as Mel did on the whole you won't be offered a HIV test. You know, because, the only women needing HIV tests are obviously sex workers and drug users. And, if you don't identify as one of them, or you, to your medical practitioner, appear to be one, you won't get a HIV test. So that's why I think, you know, diagnosis quite often goes under the radar for women.

[00:28:20] Naomi Viret: Is that your experience from the clinical setting, Nay and having worked in like this primary health care setting? So we know that the sexual health clinics and publicly funded sexual health services are probably more inclined to do that regular testing, but how about primary health care?

Is that kind of true, those statistics ?

[00:28:35] Naomi Hoffman: Yeah, I'd absolutely agree with what Tasha says. We do see with HIV testing that, um, there seems to be misconceptions that exist in the medical field in relation to who needs a HIV test and who doesn't. I also get a lot of patients coming in from hospitals that present with STI based symptoms, even chlamydia gonorrhea symptoms, and for some reason they seem to get every test but a HIV test.

So, uh, it definitely is a problem out there that does exist in general practice, in hospitals, healthcare providers, misconceptions about who needs a test and who doesn't.

[00:29:10] Naomi Viret: And from that clinical perspective, I guess that that's meaning later diagnoses of women. And so as you've already touched on Tasha as well, your experience of being quite unwell by the time that you're diagnosed with HIV. Um, what do we do about that gap, how do we, you know, encourage that testing in the earlier stages?

[00:29:29] Naomi Hoffman: Yeah, that's a really hard thing. There's a lot of information, there's education for clinicians that is available through ASHM.

For clinicians that are out there, being aware um, there's misconceptions as well around, um, people think that there's a big form that has to be completed, that a patient has to sign for a HIV test. That's a misconception that still exists in many hospitals. And so just being educated yourself. So if you are a clinician, having a look, that stuff's not required, explaining to the patient, offering the test. It's very straightforward. I think that is all part of it. I'd probably like to see some more education with healthcare providers and their own education in the medical profession when they're going through medical school.

A bit more knowledge about HIV would be really nice to see that from the beginning, so that when they get out into the, into the field, they're more aware and more informed. You know, some of these things, it takes time. Um, yeah, I'd like to see more work done in that space, but if there's any clinicians and you're not sure about this, check out the ASHM website they have a lot of great information for clinicians on how to offer testing and things like that.

[00:30:38] Tasha: Look, I sort of feel, in respect to women in general, I get the same feelings that I had when I was trying to get something done about trans health, you know.

You're just banging your head against the wall constantly just trying to get someone to listen to you, you know, and I'm in a minority of minorities, but I'd like to think that I've contributed something to getting testing and recognition and, a number on the page, so to speak, as far as trans women go.

But, just general get sexual health checks. As I was pointing out the schools I talk at, you know, it's not like going to your local GP. In fact, you can just go to your local sexual health clinic and you don't need to produce a Medicare card, it's anonymous and your parents won't find out if you've got something.

And and quite often the fear of the testing is bigger than the test itself.

[00:31:37] Naomi Viret: That's a great point. Mel, you were going to add something?

[00:31:40] Mel: I was just going to say, um, it's also, with advertising, I don't see a lot of, like, well, I live in Western Sydney, right? I don't see anywhere here where there's something that says get tested, you know, that HIV is there. But if you go into the city, there's what they call the gay postcodes. There's everything out there for our gay and bisexual brothers out there.

So, um, it also, it begins with the media as well, you know? So if there's more of that in schools, maybe, you know, how wonderful it would be to see a billboard, have you been tested? Just driving down these suburbs as well? So I think the focus also needs to be that we need to cater for everyone in Australia, not certain suburbs only where, you know, in Sydney, they are getting tested, so we don't need that much, I suppose, advertising me with out here where I am.

You know, and that's when you said there's a lot of people that are undiagnosed, maybe they just don't even think about it, but they may, if they see somebody represent somebody on a billboard, for example, representing what they look like from the CALD community about getting tested.

And I agree with Naomi, though, it also starts with the doctors and nurses speaking about it more, not just assuming because I'm a heterosexual person or woman, that I'm not going to have HIV because, um, HIV doesn't have a face. It could be anyone.

[00:32:51] Naomi Viret: Yeah, that's so eloquently said, Mel. We often say, HIV as a virus doesn't discriminate, people do. And that's the biggest issue when it comes to the stigma and discrimination that's still faced by HIV positive people. But it's like, at the end of the day, the virus doesn't discriminate and it could be any one of us at any particular time.

Whilst the virus is transmitted the same way, regardless of gender, the impacts, but also the testing and treatment can be vastly different. Um, what are some of the considerations for women with HIV when it comes to those differences?

[00:33:22] Naomi Hoffman: Yeah, so from sort of like a health care perspective we definitely consider for cisgender women or people with a uterus around pregnancy, if they're pregnancy planning that may affect what medications we're going to recommend for them. So we know that with HIV, the individual take their medication and that will then stop the, um, virus from transmitting to the baby.

So the baby can be born totally fine, which is great. You know, for example, we do have the new injectable HIV treatment, it's been quite popular for discretion. But there's not a lot of research into the use of that for people who are pregnant. So that's when sometimes we can, um, have to consider that.

We also know for cisgender women living with HIV, there's some research that suggests they experience an earlier menopause, which can have more symptoms. We know as well that some of the HIV treatments can affect bone health. So we kind of need to weigh that up when we get into women as they age, thinking about their bone health, um, thinking about menopause as well.

And we also know in terms of socially, in Australia, the gay male community is a bit more familiar with HIV. And so at times for women, I've seen there's been challenges with their friends or their partners, not understanding HIV, or they have a low level of health knowledge. Um, and they, they deal with a bit more stigma and that then it means it's, it's there, it's become their job, I suppose, to educate their partners and educate all their friends.

And that can be really tiring for people. Um, But I'm sure Mel and Tash could talk more to that. Um, they may also not know other people living with HIV, um, unless they engage in sort of these other groups like positive life and stuff like that. They may not know others and so it can be really isolating for them.

I find in comparison to other cohorts, um, I'm from a regional area here and so all my women in my, um, that I help look after here. They're all extremely secretive about their diagnosis. I had one lady that was just changing pharmacies and she would just drive past, then she'd just buy like Panadol and then she'd just get her cholesterol medication, like just sussing out the pharmacy to decide if she wanted to use that pharmacy.

So, you know, some of them don't want their children to know about their diagnosis and they're worried about, the future with aged care. If you know, will my children come to know about my diagnosis later in life?, I've also been involved in supporting women in circumstances where ridiculously somehow their HIV status has been brought up around child custody arrangements, which is absolutely ridiculous. So I've, I've helped support women through that.

Um, for those not familiar with PrEP, there's a daily pill to prevent HIV. Women and people with a uterus need to take it daily to be effective, whereas others do have some more options in terms of how to utilize PrEP.

However, same with HIV testing sometimes clinicians who prescribe PrEP can just overlook women as people, they don't need this, they don't, they won't benefit. So that can create challenges for people to access PrEP. So I think those are the main things I'd touch on from a health care perspective for women.

[00:36:30] Naomi Viret: Excellent. Thanks, Nay. And I'd like to turn over to yourselves, Mel and Tasha, both of you have self identified as having multiple minorities and do you feel like presenting as a woman to health care services with those multiple minorities has impacted, say, your treatment or your care differently from other people who may be living with HIV?

[00:36:51] Mel: Yeah, a lot of doctors assume that I, um, acquired HIV in Africa because I'm from a country in Africa that has one of the biggest populations of people living with HIV. And I have to then say to them, you know, I've got it in Australia.

And then I sometimes find myself having to educate them as well. And I, I always, I always wonder, and I've actually asked some of my gay friends, have you ever been asked how you got HIV?

[00:37:15] Tasha: How did you get it? That's so bad.

[00:37:18] Mel: As a woman, there's this curiosity about my HIV when you're the doctor, I shouldn't have to educate you, there's only a few ways that you would acquire HIV. I don't have to take you through all the ways. I'm standing more firm now in my power where I take it away from them because sometimes they'll, they'll make me feel like I have to tell them. Um, but coming back to it, I think the major thing for me as a woman living with HIV is the discrimination.

Um , but dating is annoying because you almost have to have it stamped on your face, you know U equals U and educate people about that or you know, I'm undetectable, I'm, I can still be valued, the HIV is a small part of me. I've had a journey with medication, um, I'm really blessed to be able to live in Australia where I'm my medication is free.

I'm able to access it really easily, but I know for some people in Australia, that is not the case. You know, some people live rurally. Some people can't get to the doctor to get a prescription. Um, and then some people may or may not have to pay for it. So I'm, I feel really lucky, but I wish there was more work and more talks about discriminating against women living with HIV, um, as a gay man, maybe saying I have it, maybe the perception is just, you know, Oh, they're gay, but no, they, they have their own story as well.

Like I have my own story, right. Um, so yeah.

[00:38:31] Tasha: Just a question, Mel, did you find that you had to, I'll call it doctor shopping for what it's worth, but, you know, to find a GP, at least, who you were comfortable with, who understood where you were coming from?

[00:38:48] Mel: Yeah, absolutely. I'm lucky that I have a HIV specialist who understands he's really well known in Sydney, but he understands it never made me feel small at all. But in terms of GPs, I definitely felt like I had to shop around for a doctor that was gonna, you know, look at me as Mel that I'm in there for a headache.

I'm not in there to discuss my HIV. I'm in there for my throat. It's got nothing to do with my HIV.

[00:39:08] Tasha: Yeah, I live in Surry Hills and, you know, it's a, it's a, it's a little insulated HIV bubble world and you know, I, I tend to go out west and do a lot of talks at schools out there or other organizations and it's a different country.

And you sort of realize the challenges to people living outside the bubble that they had to go through just, just to cope with their HIV experience. Things that Naomi's touched on already, even for me here, okay, like, I'm in Surry Hills, and I live in the housing, but, you know, it's the assumption is, well, you're trans, obviously, you're going to be a hooker and a drug addict as well because you're in housing and it's, it's, it's just getting past those stereotypes at times that I find difficult and you know, my, my message is out there, but it does wear you down a bit after a while.

[00:40:07] Naomi Viret: Absolutely. And like you said, I think just the fact that people are living off of that curiosity and the fact that it's none of their damn business, if it's not impacting on what you're presenting for. And let's drop the assumptions because that is what's leading to the stigma and discrimination more than anything.

 So we know that the campaigning since the start of the AIDS epidemic in the 80s has focused on men who have sex with men. And that it's very much overlooked women or person with uterus. Um, ACON have worked really heavily in the campaign space around ending HIV in collaboration with New South Wales Health and some of the campaigns have been quite meaty, I guess, in terms of the content and being targeted towards MSM.

So, the language that's being used or the imagery that's being used has been very targeted and a lot of women have identified with the fact that they haven't identified with that campaign material at all, let alone somebody who's first language is not english, um, ACON have recently developed a campaign, which is more targeted towards sexuality and gender diverse women called Word On The Sheets.

And the campaign has been designed with the hope that, you know, women become more familiar with HIV testing and the importance of general STI testing and that the campaign material is a lot more gentle, shall we say. But Tasha and Mel, have you ever seen any campaign material in regards to HIV or testing where you've gone, I can see myself represented in that, like I actually relate to that campaign material?

[00:41:33] Mel: In terms of campaigns, not so much, but I will say the U equals U um, you know, we see that everywhere, but it's also a little bit problematic because for some people, they don't even know what that means. Undetectable equals untransmissible. Some people will never be able to be achieving the undetectable as well.

So that could be a problem in itself. And what does untransmissible mean? So I think that there's certain campaigns like that, that they probably need to make a bit more broader and think about the whole community, not just for the people that might be more educated in the space. In terms of campaigns and just, I would just maybe touch on more media that I see that where I have somebody like myself represented.

I think the, um, companies like Positive Life and there's many more as well, they do a really good job with putting people out there that represents people that look like me. I'm from many minorities, I'm heterosexual, I'm black and I'm a woman. Okay. It's nice to see somebody like me represented. Um, so yeah, I don't see that many campaigns, but I think it's also because of where I live.

Ah, maybe if I lived in the inner city, I'd probably see more. I do remember one time though, I, I told somebody the story. I said, when I first went into my specialist clinic at IBAC in St. Vincent's, I looked around as a young woman, first newly diagnosed, I looked around the room and I was like, wow, am I going to be alone?

I thought I was one of the only women living in Australia because all that I saw was campaigns and, you know, yoga groups and, and walking sessions for gay and bisexual men living with HIV. So what missed opportunities we might have for people like myself out there, but I have seen the campaign that you're talking about from ACON, I really like the idea.

[00:43:09] Tasha: When I was in high school, I had to do woodwork class. I hated every minute of it, but the one takeaway I took took and this was the woodwork teacher referring to a bad piece of wood, and he said, if there's a feature in the wood, if you can't hide it, make a feature of it. And that saying always stuck with me.

So., one, one day just as a revelation, it sort of came to me that, um, hang on, wait a minute, HIV, is this much of me, right? And if you are ignorant or don't understand it or don't want to understand it, that's your issue, not mine. That was sort of a liberating experience for me. And from that, you know, Gilead Pharmaceuticals who do the HIV meds.

I do promotional work for them as well. You know, I'm so out there HIV. It's, you know, I couldn't even be in the closet if I wanted to be. And, and, you know, I've made it work for me. And, and, and I feel I'm comfortable in myself enough now. I mean, you've got the trans one hand and you've got the HIV.

And, you know, I'm good with both of them. And if, if you don't understand or you don't want to understand, the issue is on you. I'm happy to educate you on it. But leave your assumptions at the door, please.

[00:44:27] Naomi Viret: Heck yes to everything you just said..

Um, so, um, both of you have spoken about accessing services and particularly when you were newly diagnosed, some were beneficial and helpful, others perhaps not so. Um some HIV positive people when newly diagnosed might reach out in terms of that peer support or that social connection that we've heard about others for medical support, financial support, or that emotional support. Would you like to share with us some of those services and that experience?

[00:44:56] Tasha: Oh, look, that's just a minefield on its own. I mentioned earlier how I thought I could get the, um, pension if things went wrong when I moved back to Australia.

I did that trip at the end of 2011 in February of 2012 when I came back, they changed the legislation, the government did, so I didn't qualify for it at all. And, and so when I came back to Australia, not only, um, was I living on unemployment benefits and, you know, I was still suffering from comorbidities to AIDS, uh, the tax department lumbered thousands of dollars on me for not paying tax.

And it all got sorted, but it's just navigating my way through that whole messy area, and then, you know, especially if you do not have a stable place to live. You know, it called Maslow's hierarchy of needs, and I think housing is at the top. You don't have that. Everything else is just in the, in the wind.

It was just, it was just a nightmare just trying to navigate my way through government departments and whatever else. I remember doing, I think I was on my third review for getting the pension and, um, and one of the comments was, this is a woman on the panel at Centerlink, you know, well, you look fine to me.

How do you know I'm fine?

So it can be one frought with issue, but I think it comes down to the individual because I'm just so comfortable living with HIV now, and I have made this faux pas before. I'm quite happy talking about myself and I assume, I think we all know, you know, the associated saying when you assume things, um, that other people are comfortable or not, and you're not, you're not.

It took me seven years. Seven years is to come around to the fact that I'm HIV positive before I had my little epiphany. So, and, and, you know, that's that process of actually learning to live with HIV is, is one of the things I find so difficult, um, I think COVID really threw a spanner in the works for HIV testing and diagnosis. Well, it sort of just threw it to the background, so to speak. Yeah, like, I've even heard comments from audiences I've done talks with, ah, I didn't think that existed anymore. And yeah, that was a jaw dropper to me.

[00:47:59] Naomi Viret: It's problematic that those assumptions are out there too.

Like, oh, does that still exist? Well, yeah, and we know that the testing rates are down and we're trying to increase that. Mel, did you have anything that you'd like to say in regards to services and accessing that support?

[00:48:13] Mel: Yeah, I wish I'd known about the support and services out there when I was newly diagnosed and it took me about five years before I started connecting Until I found my people's what I said before, when I found Positive Life, it opened up my eyes to wow I'm not alone in this country, you know and obviously there's other services as well, but I speak highly of Positive Life because it's the only company that I am involved with but I found some really good people through Positive Life, you know, they offer many services I personally see a psychologist as well, which has been instrumental in my journey.

Um, but yeah, I, I feel like I'm one of the lucky ones. I know the newly diagnosed people like myself, we have a different story to tell in a different journey. You know, I always commend, um, our brothers and sisters that were diagnosed with HIV back in the, sixties and seventies of the journey that they had support and services that they had were nothing like what we have today.

So I do feel like I'm one of the lucky ones and when I do see opportunities to share about my story. I do. And when I see an opportunity to thank them. I do. So I'd like to say that as well. I'm grateful for the path that they walked. Um, cause the path that I walk is so different, but yeah, I feel like for myself, it's just my own journey I've had really good services.

[00:49:22] Naomi Viret: That's fantastic. And the three of you have spoken so much to the advocacy role. You are all amazing advocates for women living with HIV and for that we thank you. Is there one take home message for our audience today in terms of this advocacy space and what we can be doing moving forward?

Where do we need to shift our attention when it comes to women living with HIV?

[00:49:44] Mel: I think talk about it more, assume less and talk about it more, right? Like I said before, HIV doesn't have a race, a color, a smell, a look. HIV, anybody can, can get HIV. So talk about it more. I think sometimes with people in the medical field, it's also just having a little bit more empathy as well. You know, if somebody has cancer, the first reaction is, oh my gosh, I'm so sad, but when I say I have HIV, you see a bit of a distance and sometimes you get that, sometimes like, oh, and then the curiosity questions kick in, but the same empathy should be applied to both, right? Even though we have HIV, we still need to be afforded, privacy, respect, and empathy.

[00:50:24] Naomi Viret: Love it. Thank you, Mel. Very powerful words. Nay, do you have any final words in terms of advocacy and focusing our attention in this space?

[00:50:32] Naomi Hoffman: Yeah, I really, uh, can echo Mel's words about talking about it more, being more aware, especially from a health care standpoint and not making assumptions. It's always assumptions that cause problems, um, not offering testing or not offering PrEP or not thinking about testing. All these things are massive problems from a health care perspective that as health care workers we need to keep in mind.

Any health care workers dialing in, so, you know, that's where I think it needs to go. And the potential, uh, increasing PrEP, offering PrEP and uptake of PrEP, is also really important as well for the future.

[00:51:08] Naomi Viret: Thank you so much. Tasha.

[00:51:10] Tasha: Um, look, I'll, I'll keep doing these talks until the cows come, come home. Until we're in a world where organizations like Positive Life or ACON don't have to exist. I'll just keep talking speaking to it. Um, because, you know, governments come and go, funding is always a constant fight.

Um, awareness doesn't come about by silence. Just keep shouting, just, just keep talking to it even when people, you think people aren't hearing someone will be listening.

[00:51:47] Jennifer Farinella: Thanks for listening to On The Couch. We create this podcast because we are allies in actively challenging discrimination, microaggressions, and exclusionary behaviors. We want to create spaces where people feel safe to share their thoughts, knowing they will be heard and respected. Such an environment fosters collaboration, innovation, and contributes to a more inclusive society.

We invite you to subscribe or follow us in your favorite podcast platform. That way you will receive every new episode when it's released. To help us grow the podcast, give us a rating and leave us a review. We'd really appreciate it. Connect with us on Instagram and Facebook where you can share On The Couch with your colleagues, friends, and family.

On The Couch is made by Jennifer Farinella, Naomi Viret Maddy Stratten, and Winnie Adamson.

Until next time, peace, love, and protection.