The Truth About the HIV Crisis on Oxford Street

Before treatment brought hope, Greg Johnson watched a generation fight against HIV/AIDS. 30 years ago, antiviral therapy changed the course of HIV. But before that breakthrough, Greg Johnson spent more than a decade as a pharmacist on Sydney's Oxford Street, serving a community living through uncertainty, stigma, and devastating loss. People trusted him not only with their prescriptions, but with their stories. His novel, For a Moment More, honors those who lived through HIV/AIDS crisis, those who fought for change, and those who never had the chance to see the treatment turn fear into hope. Welcome, Greg. So good to have you.

It's lovely to be here. Thank you for having me.

What an incredible time to live through. I mean, there was so much fear throughout the whole community. Even if you were heterosexual, you were so fearful of AIDS and, you know, HIV. Tell me, bring us back to what What made Sydney's Oxford Street, which is a very famous street here in Sydney for nightlife, such an important place for the gay community during the HIV/AIDS crisis?

When I went to work there for the, the first time, I'd been working in suburban pharmacy up until then. And I remember in those first few weeks that I was working there being very aware that it was a very village atmosphere. I didn't live in the area, so it was something new for me to work in the area. But everyone seemed to know one another. There were people were incredibly friendly and cared for one another in ways that I, you know, kind of hadn't seen in suburbia. And there was always someone doing something different and amusing, which I've tried to kind of bring into the novel with the hardware shop that my character works at has a window where they display things in the window completely just to amuse people. It's not really a commercial advertising space. So there were always just people doing fabulously creative things. There was just this fun element to it. But having said that, you know, it's important not to gild the lily with the whole thing because there was a lot of, you know, recreational drug use that was really out of hand. There was a lot of crime. There was a kind of downside to it as well. But I think having that village atmosphere and having that sense of community when HIV struck meant that activism and people really coming together to try and fight not only the disease, but to fight the bureaucracy and the kind of infrastructure of that community was already in place. So they were able to just move forward with that quite easily.

When did you first realize that how serious this crisis had become?

I think probably the first day I worked at the pharmacy and just the volume of people who came in, their ages, they were, you know, generally very young men in their mid-20s to early 30s maybe. And also just the volume of medicine that they were taking. So in suburbia at that time, it was quite normal to see older people walking out with, you know, literally shopping bags full of medication with, you know, huge bottles of Mylanta for their upset stomachs and, you know, quite, quite a lot of medicine. But all of a sudden I was seeing that with, you know, very young men. I think one of the other most striking things was that people I knew came in who didn't know that I'd started working there. And so we kind of would have this standoff as they kind of handed over their prescriptions. And then, you know, we had to go and have a coffee and kind of have a bit of a chat about a few things then. So it was quite confronting. I think the, the age of people and just the number of them was very confronting.

I mean, especially so young to have something as devastating as this back in a time when there wasn't that treatment. What symptoms and HIV-related illnesses were people commonly experiencing?

By the time I'd started to work, you know, what I would call prophylactic treatment had been established and there were fairly good orders around that. So mainly it was trying to keep people's lungs clear. So they were having to take things like Bactrim permanently, things like herpes outbreaks. So either shingles or herpes simplex outbreaks, you know, both genital and oral, you know, which at that stage was acyclovir, which was, you know, we considered so expensive because it was like $100-something Oh. And, you know, compared to what medicines cost now, it was really quite trivial. So things like that. But then obviously the side effects, because at that stage, the actual antiretroviral drugs, which they had to be dispensed through the hospital system because there was a schism between the federal national health system and the state hospital system. So they were only available through hospital systems. So we didn't dispense those, but we had to help with the side effects of those, which were The original drugs, AZT, DDC, and DDI were incredibly caustic drugs, really. They— none of those drugs had been developed specifically for HIV. They were drugs that were developed, I think, even as early as the early '60s to treat cancer. And when HIV came along, I think someone literally sat in a lab somewhere with a Petri dish and heaved all chemicals known to humanity into the dish to see what would have some effect. So the dosages of those drugs too were incredibly high. So the side effects from that were generally, you know, nausea and diarrhea. So there was a lot of medication to try and, try and stop that. And I mean, we're talking a lot because the dosage people were taking of those drugs as well were, were incredible. So it was really all of those support things that came along to just try and keep— like in the novel, I kind of hit my character, Chris refers to it as his chalky, you know, external immune system that he had to kind of take all of these prophylactic drugs.

Mm-hmm.

to just try and keep his body in the same condition he would, would have been if he'd had a fully functioning immune system.

And can someone live with HIV for years without any obvious symptoms? And how long did that latency period, you know, can affect the— and how long did that latency period affect a diagnosis? I mean, was there a long period before they expressed symptoms?

Well, it went through a number of phases of, you know, the official line of what to do. But generally, an infection, people experience something like a very severe flu, which I guess as the disease went on and people were more knowledgeable, people may have recognized that and thought, I better go and get tested. There was a period where people were being told, like this was kind of the mid to late '80s, people were being told, well, you know, if you're positive, do you really want to know? No, don't bother getting tested. Just have safe sex and and you know continue on kind of thing. But then as it went on and treatments the effective treatment in terms of that it got to a point where people were saying treat treat hard and treat early. When it got to that point, then they encouraged people to get tested because it was important to keep an eye on the blood factors and what was actually going on. But it's important to remember too, I think, and I think this is a really salient point that when I went through university, which was in the late seventies, the lectures on the immune system were kind of down to. We have an immune system, there's white cells, and that was about it. So when HIV hit, so little was known about how the immune system actually functioned. So it was very difficult to then pinpoint what was stopping functioning exactly, you know, on a, on a very delicate level. So all of that work had to go on to actually work out what the immune system, how the immune system worked and what had stopped functioning. So once that work had been done and it was established, then it was really important to start monitoring people because you could keep an eye on them and you could rate their health and could actually have some, you know, trajectory about where they were heading and how they were actually traveling. That didn't, I don't think that necessarily meant to start treatment, but it was important to just start watching what, how people were. I mean, people did, I think the general rule of thumb was people had about 10 years from infection to being very, very unwell. I guess there's individual cases as well. You know, people responded differently.

It's an amazing amount of time. And they would live with those symptoms. So those symptoms for 10 years, would they have that, what you said earlier, the diarrhea, the vomiting and everything for that?

Generally, generally people were quite well once they'd got over the seroconversion. So it was probably, you know, again, it depended on the individual, but people probably did have 6, 7 years where they were symptom-free really and didn't know anything that was happening, which was why there was such an ease of spreading the virus because people just didn't know, you know, up until the early '80s, nobody knew anything was happening. And then through, you know, it was another 2 or 3 years before there was a test for the virus. So, you know, you had these long periods where people just didn't know anything was happening really.

When it was more apparent and people were expressing symptoms and lots of people were dying and there was just such an uproar around it, how did the wider Australian society view HIV/AIDS? How did it respond to the people who were suffering?

I think Australia's response from a government perspective was incredibly astute and incredibly valuable. We were very, very lucky that we had a Labor government in. We had an incredibly sympathetic man, Neil Blewett, was in the health portfolio at that time. And I think very early on, the government realised that a amount of money spent on preventative campaigns would in the end save them a huge amount of money with people in hospital. So very quickly that swung into gear. And I mean, the discussions were incredibly frank as well about what was happening. This was all aided as well by someone like Ida Buttrose, who literally just rolled up her sleeves and got on with it in talking. And as I said, talking about this in the most frank kind of manner. I think Australia was incredibly lucky in that perspective. Other— you know, in America, Reagan, it was during Reagan's 2 terms, and he was very near the end of his second term before he actually said the words HIV/AIDS. Just completely trying to ignore it, ignoring the fact that it could, you know, get into the heterosexual community, which again, our frank discussion here identified the group of men who were having sex with other men. but didn't identify as being gay. Once that cohort had been identified, it was fairly obvious that it could get into the heterosexual community. Plus, you know, you had IV drug users who, you know, come in any shape or form. I think there was the fear campaigns of things like the Grim Reaper campaign, which I have— I mean, a lot of people are so opposed to that campaign. I have a kind of bet both ways, I think, with it, because my memory of it was It did get everybody talking. Like, say, all of a sudden you couldn't move without discussing it. And again, I've tried to represent that in the novel where my character goes out for a lunch and he kind of thinks inevitably we end up talking about the Grim Reaper. I think on that level, the campaign was incredibly effective, but I'm not sure that fear is the best mechanism to get people educated through. It's had many negative ramifications. And again, my character, Chris, he works on the HIV/AIDS hotline, which was a service run at Albion Street Clinic in Darlinghurst. You know, just— it was a hotline you could just ring up and get free information and recommendations about what you could do. And he kind of says at that, that he's always felt that if you give people correct information, they'll make good decisions. So, it's kind of the opposite to what the Grim Reaper was doing, really. But, you know, as I said, I think it got everyone talking, and that's not a bad thing.

It was a very confronting campaign. And now that you've reminded me of it, I remember watching it going, wow, that's just horrific, you know. So it gave people those mixed feelings. And I think it did also bring up a lot of fear in people, fear to be around someone with HIV, even though, you know, they weren't even scared to touch them. You know, I remember saying—

Yeah, well, there was— yeah, it definitely did all of that. And then you had people— I don't know if you remember, there was a play about this recently staged at Qutopia Sydney in Darlinghurst that I've forgotten the name of the play, which is terrible. It was about Princess Diana went into a ward in London without gloves. No, you know, not latex gloves, not fashionable gloves. And, you know, touched a person who was very obviously unwell with HIV. That had a huge impact demystifying the whole thing and just saying, you know, people are safe. They're not, you know, they're not going to infect you.

So speaking about the emotions of it all, so how did How did fear, shame, and stigma affect the lives of people living with HIV back then?

Well, terribly, especially when you, you have to consider, you know, at that point, being gay was still a shameful thing to be. There were still so many people who were battling that level of shame, and then to realise that they were infected with HIV and have to deal with that as well caused a lot of consequences. You know, you can't carry that kind of burden around with you. And it also affected a lot of the families, I think, of these people because people lived with so much shame and so much secrecy. And again, I've got this in the novel that, you know, sometimes when people were on their deathbed, you know, their parents were delivered this kind of triple whammy of, you know, your son's gay, your son has HIV, And your son has AIDS and, you know, is just about to die. So all of the shame and fear caused all of these consequences, which were just very kind of unnecessary, really. And hopefully now we have overcome these things because that was another thing in Darlinghurst too. The support people, the level of support people with HIV were given was huge and multifaceted and And, you know, even down to, there was a service who delivered food to people called Meals on Heels, which was, you know, a play on Meals on Wheels for older people. There were services like Bobby Goldsmith Foundation was set up to just provide services so people could keep living at home and things. So all of these things really swung into gear and huge amounts of money, huge amounts of money were raised for providing equipment and things to 17 South, the ward at St. Vincent's So there was a huge sustained community outpouring for it.

Did the epidemic, did it change the way men or gay men thought about sex, relationships, and even their own mortality during that period?

That's a hard question to answer. Look, you know, when it first started, you know, one of the first recommendations, which was very similar to COVID, you know, was just don't have sex. I think I have this memory of Aida Buttrose saying that. And, you know, you have to remember too, they had to close down tattoo parlors because they were clearly at risk. And so there was this closing down of everything to just kind of stop until— to have a breather really, to just work out what was going on and then work out how to go forward. But I would say, I mean, you know, I'm never going to speak for gay men as a whole, but I would say that they, you know, there was a certain fear in the closing down of You know, maybe not being, you know, going out as much or having as many sexual partners as people had. But then once it became clear what the disease was, what could be done preventatively to stop yourself being infected, once these things had been established and the message was just rammed home, you know, it was everywhere. If you went to a drag show, there was some mention of HIV, even if it was just about handing a bucket around to get some money or something. People were always saying, stay safe. go to a bar, you go to the toilet to, you know, urinate. It was literally in a frame stuck to the wall as you were urinating, what you had to do to stay safe. It was just kind of inescapable. And once that had happened, I think a lot of the fear did go. So by the time of my novel, which is set in '93, I think those elements had gone and people knew the new game rules that you could play by. And they We definitely got on with it by that stage. So it was pretty much back to business as usual, I think.

So at the time they took it seriously though?

Oh, you had to. The other thing is because it was in, in, in Oxford Street anyway, you could see the effects of it. You could see people walking around who were incredibly unwell. It wasn't obscured. It was, it was very obvious. Being right there, kind of like in the front line, how did you cope watching so many people within one community become so ill You know, this is the irony, and I think a lot of people who are involved in health professions felt the same or feel the same. The irony was that, you know, I was confronted with this thing which was devastating, and partially I think I had blocked that out and forgotten about it. But when I started doing research for the novel, I went back and read some of the community newspapers like the Sydney Star Observer. There were every fortnight, it came out once a fortnight, there were just pages and pages of obituaries. And I think I'd forgotten that. I think I— I mean, I hadn't forgotten that there were obituaries, but I'd forgotten about the number of them. It was very confronting. I mean, I kind of had a rule that I didn't go to funerals because I kind of just would've been going to funerals all the time. That was very confronting. But the other side of the coin was that it was professionally, it was incredibly stimulating because it really was on the cutting edge. There was the element of desperation and there was the element of inventiveness. You know, it was always keeping an eye on things, just keeping, seeing what was around, what was new, what was available. Often, you know, someone would present with an incredibly difficult problem for them that had a very easy solution that was available if you, if I kind of hunted around a bit. So like pharmacies are a great nexus as well because they're, they know all other health professions. And so they sit in a very kind of privileged position in terms of being able to network around other professions in the area. All of that was incredibly stimulating and gave me a satisfaction that I didn't get out of working in a suburban pharmacy. I mean, it was very difficult. A lot of people burnt out. A lot of people did just get to the point where they couldn't do it anymore. Well, I guess enjoyed's not the right word, but I found it stimulating. Professionally, it was quite stimulating. Was the effective treatment, the therapy called combination Well, it had a number of names, but HAART is the general one, which is highly active antiretroviral therapy. It was called triple therapy or combination therapy, probably when it first started. Yeah.

Did that come out in 1996?

In '96, there was the, I think it was the 11th World AIDS Conference in Vancouver. And at that conference, it was announced that triple therapy or HAART was the standard that was That, that would reduce viral replication to zero. So it would stop the virus replication. Theory at that time, you couldn't get resistance because you need replication to get resistance to the drugs. And there was, I mean, no one said this definitely at that time, but then there was the hope that you wouldn't be able to, you would not infect someone because you didn't actually have the virus kind of replicating. So that happened in '96. Prior to that, there'd been trials that had been run, but they were, quite selective and restricted. So we had seen at work, we had definitely seen people we knew that were on trials of either a combination of 2 drugs or 3 drugs, and they had received, you know, really amazing results, which were quite heartening. When this announcement was made and triple therapy or HART became the standard therapy, you know, it was very quickly that we saw a lot of people who were very unwell really bloom again and actually would go off other therapies and things and actually just kind of resume life. But it's also important to remember too, at that time, those, the drugs that came in in '96, they weren't the drugs that we have now. They still had some pretty horrendous side effects and a lot of the dosages were still high. You know, they had to titrate them down to more manageable doses that were still effective. It wasn't a click of the fingers. It was over a period, but that conference in '96, which is 30 years ago this year, was really the turning point.

And did you see a big change? Like once, once men started taking this therapy, this drug or combination of drugs, was the change quite quick or did it still take quite a while for you to see, to stop seeing them dying, to start seeing them being able to cope with life and then start moving towards better health?

That's, that's an interesting question and probably something I should have considered when I was looking through the obituaries, because my memory is that the obituaries went down quite rapidly and just definitely seeing people. There were definitely, as I, as I said before, you know, there were people who were walking skeletons who it seemed quite quickly in retrospect, maybe I'm seeing it in a rosy manner, but they seemed to just bloom again into these little cherubs quite, quite kind of quickly. So I think it was fairly rapid from memory.

That's great. It's good to know, isn't it, that unfortunately for the people prior to that, There wasn't something as effective. But why was writing for a moment more important to you?

Well, I've written all my life, so I guess I've got these antennas that are always up, kind of looking for something. I think when COVID happened, I was quite shocked at hearing seroconverting and viral loads and testing positive. And all of these words again kind of really shocked me. And I had a period of thinking, oh, you know, this is all over. We don't have to talk about this anymore. Kind of thing. And then seeing doctors wandering around wrapped in plastic to go near patients, near COVID patients in the beginning, when, when no one really knew what was happening, you know, again, just reminded me of HIV. So I started thinking about it. And then I started talking to a few people, other writers I knew. One chap in particular, he was probably about 30 at the time. He just said to me, I know, I don't know anything about this. It struck me. I just thought, no, you don't know anything about this because you weren't even alive when this happened. That really struck me as well, that there's a generation or two more now who really have very little knowledge of this. So they seemed like good points to start work on it. Once I started, it just started coming very quickly and quite, quite easily, really. Like, I was quite surprised. Yeah, the ease that it came together.

Yeah, it seems like you've Phil, there is definitely a need for these stories to be preserved for the next generations because you're right.

Yeah, I think definitely. And I think Australia again, and I don't know that many people have acknowledged this, but when COVID hit, you know, we had this model for public health that was in place around what had happened with HIV. It really just needed to be dusted off, changed a bit, and repackaged. And I think in this country too, we're used to being told with smoking and bowel cancer now, breast cancer, you know, we're used to being told what we can do to stop this happening. I feel all of that, a lot of that really did come out of HIV because it's important to remember, I think, that HIV really did change the way medicine is practiced because even down to people were victims of HIV in the beginning. Towards the end of the '80s and early '90s, Through groups like ACT UP, the rhetoric around how it was described was changed severely into living with HIV/AIDS. And that's a huge shift, you know, from being a victim of something to living with something. Other disease states like breast cancer, bowel cancer, any kind of psychiatric illness now live with their disease. So it really changed the way medicine was actually practiced. Also, because HIV hit a largely— initially hit a largely educated community, People took control of their own therapy, which again is something I tried to illustrate in the novel, that, you know, people became kind of co-practitioners. The discourse of medicine prior to that had really never allowed that. You know, there was the doctor and what the doctor said kind of went. That really changed the whole way medicine is practiced, I think. And so now, you know, a patient is part of the therapeutic team and has to be consulted. And even with HIV, there were people who were very intelligent and had maybe not done a degree in medicine but had a degree in engineering or whatever else and were able to assimilate the information that was coming in and be involved in making decisions for themselves. There were other people that we saw at work who clearly did not have that capacity and they were at the behest of the medical system to really get them through. And that's the same now with any condition. But it's important that, I think, that focus of how medicine is practiced was changed.

It's a shame something like that has to happen to that kind of change. But it's also heartening to hear even back then they were actually advocating for themselves because, you know, that's one of the best things that you could possibly do, you know, because no one knows your body like you do. And, you know, to have that ability to advocate is precious.

Yeah, and also it's important too that, you know, in the beginning of treating HIV, there was very little available. You know, what was available had to be utilized effectively as well, and that really did mean having patients' involvement so they felt they were part of that as well.

It's striking the resemblance between HIV at the time and COVID. The understanding, the treatment, you know, how many people died prior to the proper treatment, vaccination, etc. And now, and now you can virtually get COVID and just feel like you've got a bad flu.

Yeah, well, again, I don't think this has really been acknowledged because of the work of HIV to understand the immune system.

Ooh!

When COVID hit, we knew the answers in weeks, really. Because of all the work that had been done with HIV, a vaccine could be developed very quickly because they knew the type of virus it was, they knew how to do all of that. And there's a sad irony that the development of a vaccine for HIV was underway, but then stalled in, I'm not sure, the early 2000s. And now, you know, we have vaccines against COVID, but we still don't have a vaccine against HIV. And that was really just out of a lack of volition rather than a lack of actual scientific knowledge, I think.

What are the numbers of people still living with HIV here in Australia?

I couldn't tell you that, I'm sorry. But it must be quite high because we now have people in their 70s who have survived nearly, you know, their whole adult lives with HIV. I met someone the other night at the launch of the novel who has had HIV for 38 years. What the infection rates are now, they have— I mean, the infection rates have definitely dropped now that there's PrEP therapy, but people are still seroconverting. And, you know, there are people who've failed therapy as well. I think that's another thing to remember, that an individual's response to therapy is really governed by their own genetics as well, and they're as varied as everything else. HIV now is really a disease of the third world, really. I think it is mainly third world Which is why it's so criminal that Trump has cut, you know, a really quite small amount of funding that provided medicine. Generic drug companies had come to the game and supplied generic versions of their drugs at cheaper cost to be distributed and dispensed into Africa. And that's all now in peril.

What do you hope readers who did not live through this period take away from the novel?

I think there's a feeling of legacy that, you know, particularly within the gay community, that when HIV started, you know, I remember the tabloid headings were like, you know, 10 inches high across the tabloid. And I remember just thinking, well, any kind of liberation is gone. You know, in the early '80s, there were— things had started happening. But what happened was, again, as I said, it hit a largely educated community. So that banded together and formed, learned how to lobby politicians, learned how to fight. So once HIV was kind of under control, they were able to then move on to other forms of activism. I'm not sure that that's often acknowledged, that that's where that came from. And so a lot of good came out of that. I think it's important for people to remember how dreadful it was. And I don't mean— I kind of get the feeling sometimes younger people think, you know, someone chipped a nail and got sick and died. You know, these were dreadful deaths. These were horrendous deaths. That needs to be acknowledged. And an organization like QUTopia in Sydney, the new kind of cultural center, the museum that's on Oxford Street, you know, has an amazing memorial to the people who died and other memorials within the building, even down to the recreation of one of the hospital rooms from 17 South. So I think that's important to remember. But I think medicine does need to remember, as I've talked about, the shift of the discourse. I think that definitely came from—

Yeah.

HIV, and I think also other disease conditions, haven't really acknowledged what they got. And, you know, even down to what gay men said, which was, this isn't good enough, this has to be done better. And, you know, I think breast cancer is the most obvious one of that, that really picked up that rhetoric and just, for want of a better word, stamped the stiletto and just said, this has to change. But I think one of the other things I really tried to embody in the novel was just the humor of the time. That even though this was the blackest, blackest time, people responded to it in the most kind of encouraging ways. And humor was definitely part of that. Like, I never have met so many funny people in my life. I wanted to embody that in the novel as well. So the novel does sound a bit dreary, I think, on first— when you first hear about it, but it's actually quite funny. I really tried to keep all that in the center of the novel as well.

It's incredible, the human spirit, isn't it? When you can be going through something so devastating Devastating, but yet you able to have a sense of humor, like retain your sense of humor. The sense of community was really big as well.

Yeah. Oh, definitely. That was— they were the things that kept it through. I, after a couple of weeks ago, I remembered a story which isn't in the novel, which is kind of a bit of a pity, but I, um, there was a man who came to work who went blind with CMV infection and had to get a guide dog. A stick. So he used to come into work with this lovely Labrador that was his seeing-eye dog. So we used to get him to take the harness off the dog because then the dog— I can't remember the dog's name, which is terrible because I usually remember dogs' names and not the people's names. The Labrador would— we'd get him to take the harness off, which meant the dog wasn't working anymore. So we could play with the dog and the dog could have fun. And he would sit in the chair and we'd make him a cup of coffee and have a chat. He said one day, you know, I always wanted a blonde in a harness. And I just remembered that. I just thought it was such a great embodiment of that humor, you know, in this dark thing that even though he'd gone blind, he could still find some kind of humor.

It's amazing how, you know, they didn't see themselves as victims but could see the bigger picture, and they just happen to be living through and experiencing something that was pretty devastating. What an incredible life experience for you, Greg, to have lived through that period and actually being there on the front line and dealing with all the people who were suffering with this. Your book is, I think, an amazing resource for people to read when they don't have any idea. I mean, I'm for sure I could ask my son, who's in his early 20s, he wouldn't have any idea about HIV and what it was like in the time.

And I think writing it as a novel rather than writing it as nonfiction allowed me to explore the emotional content of it as well, which, you know, nonfiction doesn't really allow you to do. So I hope I've documented some of that as well.

Thank you so much for coming on the show and sharing your story.

Oh, thank you. It's lovely. It's always lovely to chat about it.

Absolutely. And for all everyone who is curious, If you're curious about HIV, if you haven't lived through it, even if you did live through it at the time and want to recap the story, it would be a fascinating read. And especially for those who would like to understand a little bit about what happened in Australia's history and around the world, I'm sure it would be a very enlightening read. Your details will be in the show notes. They can order from your website.

Yeah, the website's got a link to all the bookshops who have it, so that's, that's the easiest way to find it. Yeah, right.

Thank you, Greg, for coming on.

Oh, thank you. It was lovely. Thank you.