Peter Knibbs

NORTHERN TERRITORY AIDS COUNCIL 1989–2014

    When I first started there, the only drug we had was AZT and, as we all know now, the virus became resistant to that very quickly ... We're only a small town, but a lot did die and it wasn't until the protease inhibitors were available that people stopped developing AIDS defining illnesses.

    I am Peter Knibbs and I first got involved with the AIDS Council of the Northern Territory in 1989 or 1990. I knew Dino Hodge personally, and he asked me to come to an annual general meeting for the AIDS Council. And then I got coerced into going onto the board of management, just a board member, I didn't have any official position. And I remember being overwhelmed by acronyms initially with people talking about ACON and PWLA and all the other acronyms that went with the industry back then. So, I don't think I contributed much initially, it was just a very steep learning curve.

    Terry McClafferty was on the board then and Anthony Smith who had died a year or two ago. Steve McGreevy, yeah. There's a woman, Lori Ford, and Gordon Cameron – he was new to the board as well – so we supported each other in our floundering to come to terms with it all.

    I was working at the hospital as a nurse in the orthopaedic ward, and I'd actually looked after Mark Wilson who had been the president of the AIDS Council at some stage. And I think him and Lori were travelling to Alice Springs on AIDS Council business and had a car accident and he had a quite nasty fractured pelvis, so he was in hospital for quite a while. And that was back in the days when all health care providers were petrified of anybody with HIV; myself included probably, because I didn't know any better. And poor Mark was nursed in a single room and we used barrier nursing or reverse barrier nursing, I can't remember which one. So, every time you went into the room you had to put on a gown, a mask and gloves, so of course people avoided going in if they could, because they couldn't be bothered dressing up. And his meals were always left outside, because the kitchen domestic staff were scared to take it in, and his meals were all one paper plates with plastic knives and forks so they could all be thrown away afterwards. So usually when he got his meals they'd be cold. It would have been ’88, ’89, yeah. He had a fairly open wound that had to be dressed every day, which was quite a complex thing to do as well, so in retrospect that was a real eye opener.

    I think the only saving grace was Peter Morgan, the ex-Queen Mother of Darwin. Peter was pretty out there. His mother came up to live with him from Melbourne and she was in the orthopaedic ward as well, having a knee operation. This is at the same time that Mark was in there. One minute Peter would be down fussing over mother and adjusting her bed jacket and being the good son, then he's down with Mark gossiping about all the gays in Darwin. So, I think that was good for Mark to have Peter around to provide that bit of familiarity. Being in a room by yourself where nobody wants to go in, it gets pretty isolating.

    It took a while to change. I mean, when I started working with – well it wasn't Clinic 34 then – the then AIDS/STD unit, one of my first jobs was to do education sessions for the hospital staff on HIV and what it meant, and that type of thing. Jill Gorman who was the charge nurse of the medical ward, was very progressive and she was instrumental in changing a lot of those barriers around looking after people with HIV. Eventually it got to the stage that you wouldn't know somebody was HIV by the way they were managed in hospital from any other patient.

    When I started with the AIDS/STD unit, Sue Dubow had been there quite a while and she was the stalwart of the program. She'd worked with Shirley Hendy and Nan Miller, and was basically instrumental in setting up the education programs. At that time the main emphasis was on public awareness and education, and the clinic only ran two sessions a week from outpatients in the hospital. So we weren't seeing a big caseload of people with HIV or people with STIs and things, it was mainly an educational role. I think that changed a lot once Frank Bowden took over as the head of the unit, because he was an infection disease physician and had worked at Fairfield Hospital in Melbourne during the early days of the HIV epidemic. He was very clinically focussed, and that evolved into the clinic actually moving down to Block Four where our unit was based so that we could eventually see STI patients any time of the week, and the HIV clinic expanded as well. We got another doctor on board and we would've been seeing HIV clients probably three or four clinics a week then.

    I think I first started in 1991 and then I left, I ran a café for twelve months and that wasn't a huge success. I was lucky enough to get my job back in the AIDS/STD program and I stayed there until I retired in 2014.

    I guess to put it in a different perspective, when I first started there, the only drug we had was AZT and, as we all know now, the virus became resistant to that very quickly. We had one fella who had AIDS and was dying, and we were trying to get a new drug DDI for him. We eventually got it and it was in powder form and it tasted horrible. This guy had pinned so much hope on this new drug being a miracle worker for him, but now we know it was in the same class as AZT, so the virus would've been resistant to it as soon as he started taking it, and he went on to die.

    I mean we're only a small town, but a lot did die and it wasn't until the protease inhibitors were available that people stopped developing AIDS defining illnesses.

    I was the principal HIV nurse for the clinic and being a relatively small clinic, patients were able to ring up or just pop in if they needed something. And like all medical establishments, it's very difficult to go straight to the doctors, so I was the intermediary between the client and the doctor. And it was a time of great change, and before we had the protease inhibitors people were getting very sick and up here being in the tropics, we were seeing conditions that you wouldn't see down south.

    I remember one particular fella – who Bill McMahon would remember – and he had a condition called nocardia which caused all these revolting ulcers all over his body. It's a soil bacteria, so it's contracted through contact with soil. I think he and his wife had just recently arrived in Darwin and had nowhere to stay, and Bill McMahon arranged for them to stay in a room at the AIDS Council in Knuckey Street when it was there. So you developed these very close and intense relationships with people and their families as you help them recover from these fairly devastating illnesses. But, again this particular fella went on and died because we just didn't have the drugs to treat him then and his virus became resistant to the drugs that we did have.

    There was another condition penicillium marneffei, which we saw in a guy who originally came from Burma, and that's something that is contracted through contact with rats, usually in bamboo groves. So, whether this fella had had this bacteria just living dormant for quite a while, but again that's something that people down south just never see.

    What's called the Kirby Centre now, used to be the National Centre for HIV Epidemiology and Clinical Research. They maintained databases on new cases of HIV and people who are diagnosed with AIDS defining illnesses. So we would notify these cases to them. I mean these infections weren't unknown, I mean it's not like we discovered them, but they were rare in Australia. I think Frank Bowden probably would have presented some cases at national conferences and wrote some up in medical journals.

    The introduction of the protease inhibitors certainly did give hope, and there was a lot of hype and talking about the end of HIV and AIDS with the protease inhibitors. But that was short lived because there was quite severe side effects with those drugs. They affected metabolism of fat in the body, so people were getting redistribution of body fat, they were getting big pot bellies and losing fat from their faces and their arms and their legs, and developing diabetes and other things. So the shine went off those drugs once we realised those side effects came with them.

    The other thing about them was that there was a huge pill burden with them, so people could be taking six tablets three times a day, and some had to be taken with food or on empty stomachs, and that type of thing. Compliance with medications has always been important with HIV because the drug obviously develops resistance and some clients just weren't suitable for these new regimes because they had other factors, like drug and alcohol issues or social issues that just make it difficult to take these medications regularly.

    The AIDS Council had support workers like Bill McMahon who was there during this time. He was very good in trying to find suitable housing for people if they were homeless. The drug companies used to give us little alarm reminders that the people could have to remind them when to take their tablets, and nifty little pill boxes that they could take out if they're going out for dinner, so they could take their tablets with them, and that type of thing. But the people that were going to take them were going to take them regardless, and the people with all the issues were going to fail no matter what you did.

    There was also the leftover mentality from when AZT came out, because when it was first used the doses were too high and some of the side effects were pretty atrocious, and I wouldn't be surprised if people actually died from taking AZT. So there was a bit of a conspiracy theory still going around that the drugs are worse than the disease and, even with a lot of overwhelming evidence that newer drugs did work and prolonged life and stopped people getting AIDS, there were some people that were still clinging onto these old concepts and just refused to go onto medication.

    A lot of the men who had HIV who were Indigenous, a lot of them were bisexual and urban Aboriginal people, so reasonably well educated and fairly compliant with medications and that type of thing. But with other people, I quickly learnt that I had to work with people where they're at. There was one particular Aboriginal couple that Bill and I were involved with who had alcohol issues, family issues, separated from kids and that type of thing. It was the woman who was diagnosed first and there were quite a multitude of issues to deal with, but there was no point trying to deal with her medical issues when she was worried about her kids or about her partner bashing her up last night. So, quite often you had to put your medical priorities on the back burner while you dealt with their issues.

    She was a prime example of putting somebody on medications when you shouldn't have. There was just no way she was going to manage that heavy pill burden and she ended up with multi-drug resistant virus, and eventually infected her partner, so he would've been infected with a drug resistant virus.

    The philosophy was always compliance with medication, so that's been there from day one. And we were involved with a study called the Delta Study, which was looking at two agents compared to a placebo. That was one of the very first studies that showed that using a combination of drugs provided benefit to single treatment by itself. For a small clinic we had maybe half a dozen patients on the trial, and when the trial finished we found that most of them were on active drug, so they were getting two drugs which provided them individual benefit. It kept their virus lower and T cells higher and kept them well enough until we got the newer drugs coming out that proved even more effective for them.

    My philosophy was you have to allow people to be human and everybody forgets to take drugs occasionally and it's not the end of the world. And even for patients that are missing drugs more regularly, I think it's better to take a supportive approach than try and lecture people and tell them they're doing the wrong thing. Because in the end it's their responsibility to take their medications or not, and all we can do is just be supportive and help them as much as we can.

    It's certainly a lot easier to have HIV now than it was twenty years ago, but there are still factors associated with it that don't change, and that's like telling new partners that you have HIV, which is as difficult now as it ever was. Some of my clients virtually became celibate after their diagnosis with HIV because they were just too afraid to infect other people. I think it's changing a little bit now. I think in terms of undetectable viral loads, people's risk of infecting others is very, very low, but there was still the message that you have to have safe sex every time. In some ways I think that was a little bit unreasonable and unrealistic.

    Working up here was very different to the role that nurses do in bigger centres. When I took long service leave a nurse from Liverpool Hospital in Sydney came up and did my job for three months. She was amazed at how much we were allowed to do. Because we do testing all the time and it was not uncommon for me to be giving people a positive HIV result, and that was just something that nurses would never do in centres down south. So I think being a small centre our roles were a lot more diverse and we had a lot more responsibility than a lot of other places. Conversely, when you go to conferences and say you're from Darwin, people think, "Oh, ends of the earth. What would you know about HIV", and that thing. Whereas, I think working up here, we're probably some of the most experienced clinicians in Australia when it comes to HIV.