We honour 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 centered care while supporting individuals living with HIV. We’ll start by going through the basics about HIV, and a little bit about the history so you can understand the context surrounding the issues for older people who live with HIV. Today, in our first episode, I’m joined by Simon O’Connor, a past CEO of Queensland Positive People, a board member of the National Association of People with HIV Australia, and a member of the HIV advisory panel. Can we unpack right at the very start? HIV, what do those three letters stand for? HIV stands for human immunodeficiency virus. So it’s an actual virus that specifically targets people’s immune system and diminishes that. But your immune system mounts a defence and is quite successful at keeping it in check for quite a period of time until such time as because the virus is actually targeting the cells that are protecting you and more and more of them are becoming infected, the immune system becomes overwhelmed basically by just HIV almost sending in reinforcements, reinforcements, reinforcements all the time, and the immune system just becomes overwhelmed.
Yes. So in Australia, the numbers of people who are living with HIV, so we know, like, I’m sure some of the people listening to this podcast might know of, perhaps, worldwide figures or they just know the overview of it all, But because they are working here in Australia, they’re working with Australians in Australian situations, Can you break down some of those figures for us? Just how many people are living with HIV in Australia currently? In in Australia, we’ve got about 30,000 people living with HIV. And in Australia, we lost about 8,000 people. But those people so 30,000 in Australia, 6 and a half or so within Queensland itself. Those who were able to get on treatments, who were not going into AIDS, these people are living successfully. They’re living fantastic lives with HIV. They’re on medication. They’re doing wonderful things, but, like all of us, they’re aging. That’s exactly right. There’s a great cohort now above 50. Yes. So the majority of people are now who are living with HIV in Australia are above the age 50. Yeah. So they will be looking to forms of aged care. So transmission routes, how were those transmission routes happening back 40 years ago? Well, generally, it was acknowledged that it was happening from sex without condoms, So the transmission was via sexual intercourse between people, and also sharing needles. So injecting drug users, if they shared needles, could transmit. It was a very effective way of transmitting. So really, it’s the virus coming into contact with the body through the blood or through semen Yes. Or through other bodily fluids. So it is definitely something we are going to focus on that it is not a homosexual slash gay disease, it’s a human disease. No.
That’s true. And if you look at the global statistics, like, over 50% of the people living with HIV globally are women and girls. So, it’s, unfortunately, because it arose in the in the gay community in Australia, but there was also the involvement from very early on about the involvement of the community, involvement of the gay community in particular in Australia to not try and work out what we need to do for them, but involve the community with clinicians all working together to work out what can we do to try and address this. And I think that was the other part of an effective strategy that Australia had is bringing on affected communities to say, look, we’re all in this together, clinicians and researchers and the community. What can we do? We had blunt conversations about sexual practices and about condom use and which had not really occurred before. And it was quite early on that the information was quite clear that HIV is an incredibly difficult virus to catch, and it doesn’t live very long outside the body either. Very fragile. Yeah. Absolutely. If some of these people listening to our podcast, the care workers, if they were cleaning up a messy spill, very basic hygiene practices they would be using anyway. Would be more than enough. To combat any potential fear of that. Exactly. And I wouldn’t want people in aged care to be thinking, oh my god, we’ve got someone with HIV coming in here. We’re going to have to change everything. No. We’re all going to have to wear double and triple and quadruple gloves, and we’re all going to have to wear you know, no. We don’t. And that’s why podcasts like this are great because it keeps it current.
It keeps the conversation current because quite often you possibly heard the same thing that I have. People will say, oh, HIV? Wasn’t that in the eighties? Yep. It did haven’t we moved on from that? It’s not an issue anymore. Well, it’s not an issue because we’re managing it, but we need to be aware of it. We’re going to just dive into the history of HIV in a moment because, again, there’s so many layers to this. It is well worth spending a bit of time understanding that. But I have mentioned the two terms that a lot of people will have heard, HIV and AIDS, a I d s, HIV. These two terms are not interchangeable. Yes, they’re related to each other, but they’re not one and the same. Can you explain the differences between HIV and AIDS? Sure. So, if you acquire HIV, you you’ve had the, you know, the virus has been transmitted to you, so you you’re regarded as being HIV positive. People sort of initially had what’s commonly called a seroconversion illness. And for some people, it was quite profound. It was like the worst flu they’ve ever had. They were on their back for days, flat out just couldn’t do anything, very, very ill. Other people didn’t have anything. Didn’t even notice that they’d acquired HIV, so it was very mild if if at all noticeable. We had all of that, and then we had this sort of impression that, well, it was it was just yes you got infected, but now everything’s okay. And we had no treatments at that stage either. We couldn’t there’s nothing much you could do about it. Then at the 10 year mark, all of a sudden, people were becoming ill, and we were finding out that for some reason, the virus has switched on.
No. Hadn’t switched on. Been damaging your immune system all this time. But for those people who had got to the 10 year point, their CD 4 levels, which is the markers of your immune system that the virus attacks, were so diminished that they were acquiring opportunistic infections. And it’s not necessarily HIV that is the virus that’s killing you, it’s allowing everything else to come in and kill you that your body would normally, quite easily bat away. That’s right. And they’re known as opportunistic infections. We saw a range of those, back in the early eighties when HIV first appeared within the community. The view was that you could actually see it, you know, and you felt you some of the people that were quite ill from it also developed wasting. They started, losing weight. And so, you could see that someone who had been quite buff and quite healthy was all of a sudden looking quite thin and, quite gaunt. We had other things like, candidiasis. And we had things like PCP, which is a form of pneumonia that affected the lungs, and we had things like CMV, cytomegalovirus, which affected the vision, and we also had, things like toxoplasmosis that affected the brain. That was some of the saddest stories where people who were 2030 having COPD, stuff that men in their seventies eighties would normally get and having to be on breathing apparatus That’s right. To do that. And then you start seeing people saying, oh, you know, I’m losing my sight. And then I’m losing my mind. That’s right. And so, we had people who, had very, very low CD 4 levels left. They were susceptible to all this range of different, organisms and microbes and, you know, illnesses and things that are quite, you know, frequently out there in society, but we just our immune system is able to keep them at bay and deal with them.
So when someone got to that stage, they were determined to have AIDS, which is acquired immunodeficiency syndrome. Yep. So, everyone who had AIDS was HIV positive. However, not everybody who’s HIV positive went on to develop AIDS. So that’s the distinction. In the early days, the vast majority of people seemed to progress. Like, their immune system just became so damaged that they progressed, and they got AIDS. But it’s so with the advent of treatment, it it’s become less and less over time. Like, we don’t mention AIDS anymore. You would say that, in a way, no one in Australia has AIDS. Pretty much because of the treatments have become so effective. Now, like, as you said, not a cure yet, but very, very effective at controlling the replication of the So, let’s look into the history, and the way that the media had misrepresented some aspects of HIV, It has a complex history, HIV, and how it began in the eighties. The one thing, our scientific brains saw this and just went, And I think it came from fear. I think it came from fear because we didn’t know what we were dealing with. All of a sudden, we got hit with this strange thing Yeah. That happened. And nobody knew what it was. Nobody knew where it had come from. And as you said, there was all sorts of speculation and all sorts of discussions going on. Oh, it’s been developed in a lab in America. We didn’t know what it was, and we even had some charming people, particularly in America, who, thought, well, we know what it is. It’s wrath of God. Yes. So, before it was HIV, it was WOG, wrath of God. And it was punishment for, you know, people being gay.
So we had a whole gamut of different views and opinions, you know. But it was fear, I think, that was driving it. And members of the community were terrified. And I suppose, as you said, you were living in Sydney in the eighties, I was living in Queensland, and Queensland was Joe Country. That’s right. So Queensland had a real scary state that people were contracting HIV AIDS, they were inadvertently in many ways transmitting that to other sexual partners, and other sexual partners were transmitting it to other Queensland to be kept safe. Because of a bigoted corrupt government stood between that and the health of the people whom they governed. At first, only gays and IV drug users were being killed by AIDS, But now we know every one of us could be devastated by it. I know many of people listening to this podcast now will probably be saying Women Grim Reaper. Now carry the 80 That was a major campaign by a very flash advertising agency in Sydney, very eighties. Did it do the wrong thing in your opinion, Simon? What a loaded question, Blair. I I I guess All of those people lined up, you know, they’re dropped down at the end of this very dark alley with smoke everywhere, and people looking terrified, that young girl with the long blonde hair. It’s kind of, you know, you have a different opinions about it, and so it did it did a number of things. I think certainly, if you want to see some advantage to it, if there’s, you know, if you can say that about the Grim Reaper campaign, the advantage was it certainly got everyone’s attention. Everybody knew what HIV was and, everyone was kind of talking about it at the time. So, it certainly put it on the map and put it in people’s face.
They did that on purpose because they wanted to get people’s attention. The downside of it was that it created fear in the community and to the extent where while we had Joe in Queensland not allowing any money to go towards, you know, the support of people with HIV, Even places in Sydney where you would think would be would know better like St Vincent’s Hospital. People in hospital there were not having anyone go into their rooms because they were frightened of getting HIV. People who were inpatients, at the hospital weren’t eating because the trays of food were being left outside the door. So, unless if the person was too ill and wasn’t able to get up and get their own tray from outside the door in the corridor, they wouldn’t eat. And so, there was a whole group of us who used to take food and do home cooked food to make sure that people were eating. And it was about the whole fear thing, I think, that that people were just so unsure about the whole, specifics of HIV that people were frightened, and they didn’t know what they were dealing with. And that and that been translated quite nicely, you know, into a stigmatization of people with HIV and then the gay community more broadly because, oh, you know, there’s a chance that they’ve got something that they’re going to give me, so we need to keep them at bay. To start bringing the happy part of the story and the history, End of the eighties, beginning of the nineties, 3 other letters started to appear, a zed t became three letters that many members of the gay community were very thankful to hear. Yes. That’s absolutely true. The community members were completely unified having been brought in and brought to the table, to talk with government and researchers and clinicians, about what we were going to do, and everyone was desperate for anything.
Anything because we had nothing. And so it was decided that we’d oh, we had this we had this drug that was sitting on the shelf gathering dust and wasn’t being used very much, basically because it was a failed cancer anti-cancer drug. But it was the first thing that we had, but it was the only thing that we had. And that was known as it was called monotherapy because it was one drug. That’s all we had. One of the things that helped people who live with HIV is another three letter term, ART. And that has been the game changer, to use a buzzword, for people who are HIV positive and how people who are HIV positive can pass through this world looking like anybody else. Exactly. So ART is antiretroviral therapy. With the research that was going on in collaboration with the communities and people, you know, obviously people with HIV who are HIV positive were incredible. Some of the people that we had who were donating their time and donating their blood and donating all sorts of things to try and get a handle on what the hell was going on with this bloody thing? What was it? What is this thing? What is HIV? And so through all of that and through all the research, we came to understand that the once the HIV had gotten into the CD 4 cell, it locks on through a like a key in a lock system that locks into the CD 4 cell. And once it gets into the CD 4 cell, it has a range of different things it needs to do. It has to go through different phases before it becomes a viable virus and then burst out of the cell killing the c d 4 cell.
So what they found was that they were able to disrupt the stages of reproduction in the cell with different types of drugs. With AZT, what was happening was it was it was giving some benefit for a period of time. The virus is very adaptable, and it would adapt to the AZT and it would stop working. So, what we found is if we give what we called combinations of drugs that acted on different stages of the replication of the virus, be which became known as combination therapy, we were much more successful in maintaining people’s levels of wellness and also minimising the chance of HIV to replicate and also to mutate. So that came into force in 1996, this combo therapy or combination therapy. You know, the combination therapy was a game changer. So, you know, now that was the thing that turned the whole thing around and enabled people to instead of people dying from AIDS, people began living with HIV. Really, anyone who lives with HIV who is on those therapies, they’re living the same life as another person who is HIV negative. And HIV is not having the impact that it once did, which is a a really good thing. HIV is not a death sentence? It’s not, anymore, and it used to be. And it was it was really interesting, and I’d encourage people if they if they’re interested in it to do a little bit of research. In 1996, at the combination therapy moment, all of a sudden, the death rate went from up here and it just hit the floor, and it’s never risen again. I think we’ve become resilient, you know, to to a a great extent in relation to some of the trials that we’ve been through.
And I think that, you know, just with talking with other people, you know, sometimes just talking about things like that, Sharing stories like this and talking about personal experiences can quite often really effectively support someone who’s going through something themselves that you may not necessarily know that they’re going through. But just the fact that you’re sitting and talking to them or just the fact you’re sitting and listening to a podcast, they might hear something that will go, oh, I can actually put that into play in what’s happening to me. And that was a really useful thing for me to hear. So that’s why things like this are really valuable because it continues to improve us all and to look after all of us. Simon O’Connor, thank you so much for joining us on the Snack podcast, and I hope that people will realize that 40 years of history is not the next 40 years of history, because HIV does not define anyone. HIV is not a death sentence. Yes, it’s still out there, but it is manageable, it is treatable, and everyone deserves dignity and respect. Absolutely. And, we’re keeping on the work for a vaccine, so that, and that will come, you know, sooner or later and it’ll be a thing of the past and I’ll be one of the ones cheering the loudest when that finally happens, but until that time, we still need to work to support people living with HIV just like we work to support everybody See you for the next episode. See you for the next episode. 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.
