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Welcome to SNACK, 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. I’m joined by Mark Counter, the president of Queensland Positive People. Hello, Mark. Hi. How are you doing? Well, thank you. Before we commence our conversation, may I just check with you what pronouns you use, please? He. And I use he, him, or they, them. Thank you. So, we have been exploring in these episodes and we’ve been quite clear that people who are living with HIV live very normal and some of them have said to me quite boring lives, really. You know, it’s the same as anyone else who may have diabetes or any other form of controllable medical condition, but there are challenges for older people living with HIV in Australia, especially. So, some of the things I wanted to talk about, obviously, as you age, things start to not work as well. What are some of the health issues that you face as a person who’s aging? I know this is a podcast, but if you could see me, I’ve got absolutely no body fat, I’ve got no cheeks.
I’ve got no skin. All I am is just skin and bone, effectively. And as a result of losing all my fat cells, I ended up with cirrhosis of the liver because the only place the fat could go was into my liver. So now I I deal with cirrhosis of the liver, and in fact, the treatments in those early days were did almost as much harm to people as it did. I mean, we’re fortunate still to be alive, but there are a lot of consequences of those early drugs. And for me, one of them is this lipodystrophy that I have and cirrhosis. But it seems now that the drugs, even the drugs we have today, are not still completely suppressing immune responses. So all of us who’ve been around for a long time have multiple comorbidities, and I think that’s the biggest challenge now. It’s not so much the drugs themselves. But there is, as you said, you’re living with some of those early medications. You’re living with the impact of that. Yeah. Absolutely. Yeah. So particularly the liver and the cirrhosis. I, for some time now, felt that more likely I would die of some sort of liver related disease than I would anything else. Have the challenges for people who live with HIV changed since eighties, even the early nineties? Surprisingly, the fact that HIV has become more manageable has actually, in some ways, made it a little more difficult for some, like myself, who’ve been around for a very long time. Because there’s this there’s the people who’ve been diagnosed recently, who just went straight onto treatment and had almost no impact, don’t understand that there was there’s a lot of embedded trauma in what we lived through in the early days.
There’s a lot of chronic disease, multiple chronic diseases that you would not normally expect to see in someone of our age. So, the insides of my body is about 10 to 15 years older than the outside of my body, and that’s common for most people from my era. Doctors don’t really pick up on that. You have to be your own physician in some ways and make sure that whenever you talk to people, they understand that that what you what you might normally have at the age of whatever age you are as an older person living with HIV, your body is actually significantly more traumatized than that and you expect to see a lot more complications. HIV, HIV, hypertension, ischemic heart disease, diabetes type 2, chronic obstructive pulmonary disease, osteopenia, osteoarthritis of the hip, aortic stenosis, but that is query, and that’s about it, really. But they’re facts of my life. Can you tell us a little bit about what it was like in the early days of HIV? Well, I was diagnosed in 1985 when the actual term HIV didn’t exist. So, it’s coming on for 38 years now. There was a lot of uncertainty, obviously a lot of fear. I was told that I should get my affairs in order because I only had 12 months to live. And I continued to wait for that to happen. Moving into the nineties and ARVs become available, and it changes lives. What was it like for yourself? Well, yeah. Absolutely. It changed my life. It suddenly meant I was up every night, 4 times a day, but a sense that maybe I was one of the lucky ones. I had I had buried so many of my friends and I just kept thinking, how is it that I’m still here?
I should have been dead years ago. But you did what you did. The treatments were incredibly difficult and tough. One thing that aged care support workers, home care workers, etcetera, are going to have to deal with in providing care to people who live with HIV is that daily medication Yeah. All of those things. So how important is that going to be for them and assistance, but also changes that may be needed as time goes on? Certainly, older hill HIV like me, the ones who are actually facing aged care now, particularly those who are infected early on, will have multiple I mean, I have just a huge number. And I think the fear is that when you start to lose your cognitive skills that you start to misunderstand what you’ve had, when you’ve had it, etcetera. And I I would hope that anyone who is working would stay alert to that and be checking pillboxes and making sure that everyone’s on the pills and that they understand what they’re for and that they are being taken. It would be good, I think, for them to actually understand the import what each one of them is doing, rather than just that you’ve had had your 7 pills today, actually understand that the 7 pills are designed to do this, this, this, and this. Particularly, obviously Particularly, obviously, the HIV medication, because without it, a viral load would rapidly return, and we’d have AIDS in a minute, and we’d be dead in a year. So Yes. Your own experience, as you said earlier there that you didn’t have a lot of support in the early days, you almost had no support at all. But since then, the development of treatments and the development of being able to live with HIV, and people living with HIV aren’t defined by that.
They are No. As living well, yourself Yeah. Living proof if I could use that term. But what experiences have you had with either aged care support or support workers, healthcare workers? What interactions have you had and experiences there, particularly positive ones? Well, I’m fortunately, I’m 65, so I’m not quite at the point of needing aged care. I’m certainly incredibly aware of it, and have been looking into what the options might be. I’m fortunate one of the fortunate ones who has a partner, and he is negative. So he probably will live longer than I have, and I’m lucky that I have someone there that I can probably rely on for a bit longer than many. But I’m very aware of lots of people who don’t have partners, and I think the issue for us coming as we get older is not only all of the multiple diseases and managing hospital appointments and complex silos within the health system. I mean, I have 4 specialists and I’m fortunate enough to have enough money to be able to get to them, and travel and do all of those things. But for a lot of older people who are on their own, managing the health system The threat, I think, particularly of things like dementia or, HIV AIDS neurocognitive disease, hand, What happens if you lose the ability to negotiate for yourself? And I think that’s one of the reasons that we take aging so seriously in QPP, is that we are aware that the population is aging. The upside of surviving is that you get older and you all you get older with lots of complex comorbidities that need managing. And as I said, we’re dealing with a health system that’s incredibly siloed. The HIV specialist doesn’t talk to the liver specialist doesn’t talk to the diabetes specialist doesn’t talk.
Is that a problem? Oh, absolutely. It’s a disaster. For anybody who’s diagnosed with multiple comorbidities, you really, as I said, have to be your own GP. I’m fortunate that I’m articulate and I’m driven, and I don’t let it as so far, I haven’t let it become an issue for me. But I fear what might happen in the future if my ability to negotiate those things reduces. Mark, you’ve talked about the problems and clearly there are problems in communication. But do you have any instance where you felt supported? So, yeah, there had been a few. I had a dentist who was totally unfazed, by it, who put me straight in the middle of the queue and just wore normal precautions, etcetera. And I’ve always been so grateful to him. He was one of the highlights of my life really, is that he is a dentist doing quite invasive things, treating me as a normal person, and that was really, I think important. I’ve had a few nurses similar. My GP even now is similar. Doesn’t not bothered by it at all. Admittedly, I don’t have a viral load, so he’s not at risk. Yes. We have had stories from people from the community in previous episodes that there are social and mental health challenges for people living with HIV, particularly those getting older. And, again, discussing people like yourself from that generation in the eighties who were the first impacted by HIV. The things I want to sort of discuss with you relate to discrimination and social isolation. What can you say to that discussion about discriminating against people living with HIV and an older person and the risk of social isolation? I would say it’s almost every single person who lived through the early days was discriminated, against in some way.
I certainly carry my scars. I know everyone that I’ve spoken to does. I think the thing that we fear I I certainly fear most, I can’t speak on others, but one of the things I fear is that they will start to, treat us in a way that brings all that back and reignites those memories, that we are now unable to negotiate that safe space for ourself because we’re too old or we’re too fragile or whatever, and suddenly we’re back in under the care of someone who has the power to make our life difficult. I mean, my great fear is that I will be left alone, my partner will die before me, and I’ll end up in some facility where I will be scared to speak out in case I I get penalised, whether I have care withheld from me, and so I lie there and just accept what I’m being given for fear. And I think that’s one of the great fears that when I talk to older people that I have as clients of our organization, that’s the great fear that they have. They’ve lost their friends, they’ve lost their partners, their families have abandoned them anyway because most of them are gay, and they’re facing aged care on their own. And they’re facing an aged care system which frankly, to date, has lots of bad stories attached to it. It it might be getting better, and we hope that it is, but that is a great fear that that still pervades, I think. As you said, you’re not currently in the market, shall I say, for home care or for aged care, but you are looking towards it. Have you and your partner and the people around you, have you discussed what a good care provider might be?
What’s the ideal home care experience, and what does good home care look like to you? I suppose it’s unobtrusive. It’s accepting of the relationship we have. I would hope it’s not someone who is going to not patronize but take over my life. I would want someone to support me in whatever I can do. It may be that I can’t do all that I used to. Someone who respects that I my brain essentially is still the same brain I had 30, 40 years ago, and I still need to feel like I’m in control. So I don’t want someone coming in and telling me that they this, that, and the other. I actually want them to negotiate that. I want them to respect my integrity and my choices, and as much as possible, keep me feeling like I’m in control of my life. Respect my partner’s decisions in that respect too, not just that, you know, we’re a couple and, Phil has to live with me, you know, after they leave. What sort of resources would you say are the key things that you think they need to start to be aware of if they’re going to be working with people who live with HIV? I would hope that they have self-analysed their internal prejudices and decided whether or not this is a the right fit. I I would hope that there would be they would source the training. I do believe that there is material through a number of ASHUM websites and places like that where they can get this information. Would HIV specific training for people in aged care and home care be worthwhile? I’d like to think, and it’s one of the things that we would like to try and negotiate Sure.
Is that that this sort of we used to have a speakers bureau that used to go out and do these things, and it was incredibly powerful when an individual so instead of the theory and the numbers and whatever, when someone actually gave their personal story, and people could see, oh, okay, this is a real person and they’ve been through this trauma, I think that the sort of training, as much as possible, should be focused at that level. It should be the personal it should be personal experiences, backed up of course by the data and the research and the evidence. And I think in the case of the discriminatory stuff, that the Australian experience is different. And, that that rather than see the gay population as being the problem, they’re actually an incredibly important part of stopping the spread into the broader population. So changing the lens, we’re looking at aged care workers, home care and health support workers working with people who live with HIV in their home or in a care facility, do you think them being able to understand more, being able to work more with people who live with HIV, they can address stigma and discrimination in the broader community. And I’m just reminded of the famous quote from 1978 of Harvey Milk saying, they can’t hate you if they know you. Yeah. I absolutely agree. I think that health care workers who are talking with other health care workers, talking with their families, talking with their friends, who are describing their experiences at work, and who just include the people that they live that living with HIV as amongst their clients, as just another one of their clients. In other words, this isn’t a special client. This is an ordinary client.
Nice bloke. Enjoy going over there. He has HIV. It’s no different, different challenges, you know, whatever. But in a way that conveys that they are not fearful, that they are not judgmental, and essentially another person that they deal with, I think has a real opportunity to tell other people that they equally should not be fearful, that they shouldn’t be judgmental. I I think those people working in those in those environments engender respect and trust, and I think that they have a an enormous capacity to just make it as normal as any other client. You’ve mentioned, again, back to the beginning days, that fear, living in isolation, a lot of it driven by people not knowing what was happening. Are there still reservations today? Do you carry those through about living with your HIV status and engaging with home care, support services more broadly. This can include other health care workers as well. Yeah. Absolutely. I think that’s one of the reasons that, as I said, we’re focused on aging aged care. The health system by and large has been educated. In most places, if you go into the health system, most people that you come across understand that HIV is no longer a threat. So we’ve done a good job in updating health care. I don’t think we’ve done the same job in updating aged care. I think there are a lot of residual concerns about, you know, what’s infectious and what’s not. There’s presumably still misunderstandings about whether this is a gay disease or a general disease. I think there are probably some degree of homophobia still there. And so I think the challenge for someone who’s going to potentially care for someone for a with HIV is to ask them those questions before they arrive.
What if I find this new client is in a is a gay man in a gay couple? How am I going to react? And there’s something else you mentioned a little earlier, Mark, is treating you with dignity and respect as well and not talking to you as if you’re a 2 year old child who has or has not had the smarties that they were or were not allowed to have. I think the thing that I’ve learned as I’ve gotten older is my brain, effectively, hasn’t changed. I’m still the young person inside that I was a long time ago. My body doesn’t feel it anymore and I’m fearful that eventually my mind might also start to falter. But inside there is still a person that wants to be treated with respect and dignity, etcetera, and I think anyone who’s going to work in this space needs to feel confident and comfortable that that’s something they can offer. Mark, thank you for joining us. Pleasure. QPP are a peer led, community based organisation based in Queensland who are committed to improving the lives of all people living with HIV. For more information on anything you have heard in this podcast, please refer to the show notes associated with this episode. 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 Program, which was funded through grant funding from the Australian government.
