Special thanks to our host for this season, Blair Martin – award winning actor, presenter, writer, and radio host of “Queer Radio” at community radio 4ZZZ Meanjin/Brisbane.
We would also like to thank to all the guests and organisations that contributed to this episode.
For further information about HIV, check out the links below:
If you would like further information about QPP services, please visit:
QPP would like to acknowledge the importance of our diverse PLHIV communities as they shape the principles that underpin the work we do. The lived experience and peer contributions of PLHIV remains always at the centre of who we are at QPP. We would like to take a moment to remember those who are no longer with us and laid the foundations for QPP and the sector – we remember the courage and sacrifice of many and we will continue to work towards a world where people with HIV live lives to their full potential, in good health and free from discrimination.
This season of SNACK has been produced by Queensland Positive People as part of the COTA Queensland Consortium Home Care Workforce Support Program which received grant funding from the Australian Government.
Produced by Martin Franklin at East Coast StudioÂ
We honor and pay respect to the traditional custodians of the many lands and waters upon which we work and live, paying particular respect to the Turrbal and Jagera peoples. QPP recognizes that this land is unceded and has always been under First Nations’ custodianship. We pay our respects to elders past and present and to emerging community leaders. In this podcast, there may be issues, concepts, information, and reminiscences which may be triggering for some people. Listener discretion is advised, and resources are available should you find sections of this podcast challenging. Welcome to SNAC, the Aged Care podcast where we break down some of the big questions around what it really means to be person centered. I’m Blair Martin. In the coming episodes, we’re delving into person centred care while supporting individuals living with HIV. Today I’m going to be joined by 2 people, Greg McGurk and Alexandra Strategos. Greg is the coordinator of peer services at Queensland Positive People, known as QPP, and has been working with HIV positive clients for 7 years, helping many to access support services for disability or aging for many of those clients. Alexandra is a principal solicitor of the HIV AIDS Legal Centre, known as HALC, h a l c, in Sydney. HALC is a specialist community legal centre that provides advocacy, casework, and law reform on HIV related legal matters. This podcast, we’re on a mission to debunk some of the more persistent and harmful myths about HIV, we’re gonna separate fact from fiction. Let’s talk about transmission. What are the ways that HIV is transmitted, Greg? Well, HIV being a blood borne virus can only be transmitted by a connection between bodily fluids of 2 people, but not all fluids. Typically, it would be blood to blood, say, through a blood transfusion, or through sexual fluids through, penetrative sex, anal sex or vaginal sex, but not through other sexual activities such as, touch through the hands or oral sex.
And this fact is, perhaps a a longer story of, back in the early days when HIV was first known, people were afraid of all sexual contact and perhaps all other kinds of personal contact. We’ve also discussed in some of the other episodes of the podcast some of the crazy myths that grew up. People fought blood. Oh, gosh. I get bitten by a mosquito. I have blood. So if a mosquito has bitten a Those myths were incredible. Sure. In a way, you can understand why people myths were incredible. In a way, you can understand why people thought that, but they’ve long since been debunked. Yes. So, thankfully, HIV is not a very persistent virus outside of the body, Unlike some viruses or bacteria that can survive outside of the human body, HIV falls apart and and stops being, transmissible after the blood changes its, temperature or changes, other, physical attributes. So thankfully, spilt blood is relatively safe. Blood that might be, transmitted through, a mosquito or anything else is completely safe. It really does need to be more or less a contact directly to a person’s flowing blood. It’s gotta come straight into the body. So everything else, bodily fluids such as saliva or anything else, so Absolutely. Vomit. Yeah. Or The kinds of things that anybody is coming in contact with in day to day care or is usually perfectly safe for HIV, not so much for other things, of course. And so it’s important to remember that the kinds of hygiene protocols that people use in their day to day work when caring are more than sufficient to protect against transmission of HIV. In fact, a person with HIV has much more to fear from, things that could be caught from a support worker than the other direction.
The thing that a worker who’s coming in to providing home care or aged care is that if someone is on HIV medication, their lives are almost no different from another person who might be taking medication for hypertension or diabetes while acknowledging, as you’ve said, they’re going to have some issues with that, they are also living with comorbidities as well, but their life is going to be they’re going to live a long and quite fulfilling life even though they do have HIV. A 100%. We now have, people who have been living with HIV for more than 30 years in our, community who, they’ve got the same complications with life that everybody else does, maintaining their relationships and paying for their rent and, dealing with, going to the doctor and managing their blood pressure and all of the other things that are going on. But HIV is relatively simple to treat in itself, one pill a day for most part for most people. And what it leads to is having effectively no HIV flowing in your blood when the treatment is fully adopted. So those myths and misconceptions are still out there, but, hopefully, more education, more communication will start to dispel those. But those key ones that we’ve just discussed lead to and contribute to stigma and discrimination. In previous episode of the Snack podcast, we talked through the history of HIV and a lot of the stigma associated with HIV and the discrimination against people living with HIV in those early days of the pandemic. Well, is that still the case today? 1 of our guests talked about some experiences of discrimination and even vilification. So, let’s have a listen. I was put in a position a few years ago where I was actually a victim of a HIV hate crime.
And this is only 12 years ago, and it was by other gay men who incidentally found out I met somebody online, and they did not like the idea that their friend was actually dealing with somebody who was positive. I had my life threatened for over 3 weeks. Beer bottles cascading into my home. It was the most horrific thing I have ever dealt with. And I have dealt with the hate from Sydney. I have dealt with hate. I moved to a country town. I knew it was a witch hunt there if I actually disclosed. So, Greg, listening to these stories, which some of them are fairly recent, some do go back a little way, the difference between stigma and discrimination is pretty stark in many ways. How is it understood by someone who is a peer support worker? Yes. So, look, it’s one thing to know the facts about HIV. It’s another thing altogether to have a kind of emotional baggage from those old messages like the grim reaper ads where you are supposed to fear anything to do with HIV, including all people with HIV, was an unfortunate side effect. And stigma is kind of perhaps an emotional reaction that’s a bit unconscious uncontrollable that could work even in your in your own self that a person might have stigmatizing thoughts and feelings about their own HIV status. And that does it just builds on already the feelings that kind of come with that, the trauma. 1 of our previous episodes, we’ve talked about, you know, how it’s collective trauma. It’s built on years of seeing members of the community, loved ones, partners get sick and die, and to be treated as a pariah, being ostracized from family, community, even your own community of diverse and gender and sexuality people.
That then has led to discrimination. We’ll bring Alex in shortly on this. Discrimination is illegal, and it cannot be allowed to continue. Yeah. The discrimination is something that is kind of more overt, and it comes through actions or words that are, really directed at a person. But the stigma can be more atmospheric, like it can be right there in the in our culture. It can be in the media. We can experience it third hand. And I think it’s really important to remember that, especially some of the older positive people in our community, that because they’ve lived through experiences of really overt rejection by society sometimes or really overt expressions of discrimination that makes them a little bit tentative about, trusting people in the health service or sometimes trusting people with authority or letting go of of their own sense of independence, like asking for help from a carer. This can be a really kind of deep seated, worry and something that really needs to be addressed with compassion. It’s hard for us to know all of somebody’s, life story, but you can be certain that an older person with HIV has had some experiences from a long time ago that will leave some scars, a 100%. Alex, talking of discrimination, in your professional capacity working at the HIV AIDS Legal Centre, what are the most common situations impacting people living with HIV regarding discrimination? Well, I’d say that we most commonly see discrimination in the provision of services including in healthcare, in employment settings, and also in social interactions. When we’re talking about employment sometimes it can be really obvious discrimination. It’s the somebody has disclosed their HIV status, suddenly their duties are changed, suddenly they put on, say, night shift when there’s less people who are on or for instance they’re told that they have to have their own cutlery and own plate and cup in the tea room or been told not to use the dishwasher.
And sometimes it’s more subtle, it’s sort of working somebody out of an employment setting, for example, by changing up duties or alleging that somebody dismissing someone from employment because they have, allegedly lied on a pre employment medical by not disclosing their HIV status or not disclosing the fact that they were on antiretrovirals even in circumstances where they didn’t need to, under law, be disclosing that information. When we’re looking at discrimination in provision of services including healthcare settings, it can also be the delivery of other services such as insurance, such as a migration setting, for example. The healthcare setting is disappointingly the highest area of discrimination claims that we see come through our centre and that’s not necessarily because that health care workers are discriminating or are more discriminatory than any other sector of society but it’s because that’s a setting where people feel that they perhaps should disclose their HIV status or they feel that it should be a safe place to disclose their HOB status and that’s why the discrimination comes up more frequently. We had a case a few years ago that was particularly unsettling. It had a new mother having a baby in a hospital. She’d undergone a c section and, she couldn’t get out of bed to be attending to the baby. She was a single mother. The nurses in the ward had placed her in a private room which might seem nice but they put infection control stickers over the door. They put down her HIV status in big letters and big writing on her charts and she heard people whispering from the nursing station when I say whispering quite loudly really gossiping about her HIV status and when they were coming in to tend to the baby and change the baby’s nappy, they were putting on gloves and a gown to change the baby’s nappy which is completely unnecessary and putting on gloves and gown when they were tending to her as well.
And then we’re also looking at discrimination in say social settings for instance which that is perhaps another really common area that people are facing discrimination and it is the area that’s most challenging because often there’s limited legal recourse when there’s discrimination in those social settings. So, from a legal standpoint, how can home care workers ensure that they are providing services in a way well, it sounds like from the story you’ve just given, there was absolutely no respect to the dignity and privacy of that individual. So how can home care workers, aged care workers respect dignity and privacy of individuals with HIV while also complying with legal requirements? Well, it’s pretty easy, really. All health care workers, including in home workers, would be taught about standard precautions. That means essentially, you’re treating everybody as if they are potentially HIV positive or have some other blood borne virus. So as long as you’re following those standard precautions there’s no need to be behaving differently at all, you just treat everybody exactly the same. If somebody does feel confident enough or feel that they somehow need to be disclosing their HIV status then you need to respect their privacy and that might mean not talking about their HIV status with other people, not unnecessarily including their HIV status on medical records or notes if it’s not medically necessary to be recording that information. And also, be mindful of the fact that there are very, very limited circumstances where a person living with HIV would legally have to disclose their HIV status. So that means it is very possible that you are assisting somebody living with HIV and they haven’t told you or it’s very, very possible assisting somebody living with HIV who is not aware of their HIV status.
And that is why the standard precautions exist. Have you got anything to share with those who are listening that shows a change, a very positive change in the way that working together has combated discrimination? Well, unfortunately, once you get lawyers involved, there’s unlikely to be big heartfelt apologies, from the perpetrators of discrimination because no one from a liability perspective really want to admit fault. But we have been able to negotiate settlements, that are litigated or through conciliation to get positive outcomes on behalf of clients. Often clients like including in a, say, conciliated settlement, an aspect of that that involves, commitment from a respondent, so a person who has discriminated, to engage in some form of training in terms of an actual training session and we have seen some positive acceptance of those provisions in a conciliated settlement and seen in healthcare settings people really embracing that training aspect engaging with organizations such as QPP for example to come and provide some sort of training to the setting so that that sort of discrimination doesn’t happen again in the future. Alex and Greg, you come from 2 different sides in a way. So, Alex, you’re looking at it from a legal perspective and how discrimination laws are reducing stigma, hopefully, and Greg, as a peer support worker, actually working with people and doing day to day things that make stigma less likely to happen and, thus, discrimination shouldn’t happen. As workers who are listening to this podcast going into aged care and at home care, what are some of the key things? And I’d like to ask both of you if there’s some key points that you think are saying, yeah, these are things that you can do that will reduce that stigma and not lead to discrimination happening.
Well, I’d say just keep in mind those standard precautions and if you notice a colleague who’s not following the standard precautions, you can remind them to do so and not in a way that would be stigmatizing of people living with HIV or other blood borne viruses, but just say, hey, you know, don’t you think we should pop gloves on to do that, for example? And it can be in sort of more subtle ways introducing that training, and that’s just reminding people to enforce the standard precautions. And if that happens, realistically, discrimination should not be occurring. Greg? I think the key piece is to, remember or approach a a new client of a support worker, approaching it from the point of view that HIV is just one of the many medical conditions that your clients might be living with. And it is amongst the easiest to treat and the most difficult to transmit compared to other things such as hepatitis and the like, which are easier to transmit, or COVID, or all of the other things that we’ve been dealing with over the last few years. Other, health conditions that are occurring for people who are aging are far more difficult for a person to manage in their life. I’m thinking about diabetes. I’m thinking about dementia, and things like this, which are very complex and very, very debilitating. And so HIV has a reputation perhaps that’s followed it into the present from decades ago that it doesn’t deserve. And I think this is the bit to remember that it’s just one of the many things that you’ll be dealing with and one of the easiest. We’ve talked to some people living with HIV who have had experiences with health care services and stigma.
There were some that had negative experiences and some had quite a positive experience and some who’ve taken a negative experience and became positive. In my own personal life, I’ve had to do the gauntlet of dealing with every form of health professional from day 1. I actually was diagnosed in the beginning of the epidemic in the central bit of Sydney. So, I’ve seen the hatred. I’ve seen I’ve seen some disgusting behaviour in my life. Right up until 2 years ago when I personally was in hospital, and I had a nurse refused to give me my treatment. But amongst all of this, I’ve also found some wonderful support workers amongst that, of which gave me strength to be able to advocate for myself. And I’m a very strong advocator for myself because many years ago, people like myself had 2 things taken away from us. 1 was choice. We were told to take or behave under certain circumstances. To disclose, not to disclose. Disclose when it’s necessary. To take a regime of drugs that we didn’t want to take but you were enforced. So finally, I found a practitioner that gave me back my choice, and I think that was the most powerful thing I’ve ever had given back to me in my whole health journey was choice. So, I think that’s the most important thing I find for anybody that they still have to have their choice. And if anybody is pointing a finger at them, that’s the wrong person that they should be sitting in front of. Greg, we’ve listened to some of those experiences that people living with HIV have had. What are some of those experiences that you have heard as a peer support worker that are the key things that have gone, yeah, this this has changed.
This is what works. Well, I think what these stories demonstrate really clearly is what works is to treat a person with respect, to treat each client or patient in the same way that you would treat any other, that HIV isn’t actually something that marks them differently to other patients and clients. And when we’re talking about HIV as a medical condition, it also has an emotional kind of content to it or a history to it as well. And so, allowing for kindness and compassion for a person’s experience as part of that picture when you’re dealing with them. I’m surprised sometimes, with working with clients that, unfortunately, in Queensland, most, HIV positive people need to see a specialist for HIV and then a GP for their other health conditions, and perhaps another specialist for another thing over here. Coordinating all of that ends up becoming quite hard. And so, anybody who can help with keeping the picture together so that so that a a person who’s getting older isn’t trying to do all the coordination themselves. That kind of thing is a real winning formula for a lot of people. Even better is a support worker or a doctor who’s able to see that big picture and just put things in perspective. Well, thank you everyone who has joined us today on another episode of Snack. One of the things to take away from this, it’s all on us to challenge misconceptions, promote understanding, and create a world where everyone is treated with dignity and respect regardless of their HIV status. Thank you very much to Alex and to Greg and thank you to you for listening in today. Stay person centred and join us next time for some more insights of working with people who are in aged care or at home care who live with HIV.
Until then, take care of yourselves and others. QPP are a peer led community based organisation based in Queensland who are committed to improving the lives of all people living with HIV. Funding for this podcast has been provided by the Council on the Aging Queensland Home Care Workforce Support Consortium as part of the Home Care Workforce Support Programme, which was funded through grant funding from the Australian government.
