Craig Cooper and David Cooper (no relation) were colleagues in the HIV sector in NSW. At the time of writing, Craig was the CEO of Positive Life NSW and David was the Director of the Kirby Institute. They first met in 2003 when Craig was referred to David after he was diagnosed with HIV. David remained Craig’s physician until David’s death in 2018.
I was diagnosed with HIV in 2003 by a GP and because he wasn’t a HIV anti-retroviral prescriber, I started going through a process of negotiations with him and some friends around trying to find a doctor that was experienced in the field. I had a few recommendations about Professor Cooper at that point, so my GP referred me to meet David and we took it from there.
The first time I met him, I was really nervous. I went in there with a list of questions and to try and work out and whether he was going to be the right doctor for me. But when we started talking through everything and what was going on – what my blood results were, what blood tests needed to occur, and where I was regarding my results – I started feeling more comfortable and reassured that he was going to be a good doctor for me. By the end of the appointment, he said to me, ‘If you have any concerns or any confusion about what we’ve just talked about, send me an email’. And he gave me his personal email address and that really assured me that he was contactable and would be there to help me work out what was going on.
I’ve been with David as my doctor for 12 years, on and off.
The nature of our relationship now is quite different to what it used to be because we work together as CEO of Positive Life NSW and him as the head of Kirby Institute.
Typically if there is something going on from the Kirby’s perspective that they’re needing some community involvement in, or from a community perspective and there’s some clinical stuff going on, then we have conversations, we set up meetings, we sit down and talk things through so it’s a reciprocal advisory sort of thing. And it works really well.
Because we have a solid and respectful relationship as patient and physician, that carries over, because we sort know each other.
So we have a bit of a layered relationship.
But the moments that are quite affirming for me are the hard times. There were two times. The first time was when we were trying to make a decision about commencing treatment and he was quite concerned because, in terms of the seroconversion illness, my viral load was over 200,000 and my 34 cells were plummeting and I wasn’t having the typical immunological response or recovery from the acute infection. So I kept getting sicker and sicker so he was quite concerned about what was happening to me. I could see the concern for him and him being quite perplexed about why I wasn’t recovering from the seroconversion.
And the other moment was when I had a secondary bacterial infection and I got an abscess on my leg from that. That took over 12 months to heal. He was likewise in that moment. It was quite difficult and quite stressful to try and work out what was going on with my body and it’s good having a clinician that joins with you in the worry and stands by you even through the difficult times when you’re not exactly sure what the right thing to do is. That’s the thing that impressed me with David is that he’s somebody that’s with you in the moment and has your back.
If you’re not one hundred percent comfortable with your doctor and you’re not sure you’re able to have all the conversations you need to have with him, then you need to find another doctor. It’s really important that you feel confident and safe with your doctor because this is a long term relationship. When you first engage with a clinician and you start going on treatment, it’s going to be years if not decades that you’re going to be in a relationship with this person. My relationship with David has lasted longer than any of my personal relationships in terms of marriages or lovers so it’s a really important relationship to get right.
I first met Craig when he was referred to me by his GP. I saw him, he hadn’t started ART and I think he wanted some advice from me on starting treatment.
I recommended that he participate in a clinical trial. And I was a bit taken aback, because I didn’t quite see him a candidate for enrolling in a clinical trial and I think I’ve got a good clinical sense of people who want to participate and those who don’t and I just got the sense that he just wanted treatment. But he actually participated in the trial and I think we both learnt a lot about each other. I think he learned about the research process by which we develop new drugs to treat people with HIV and I learned a lot from him about his perceptions on having HIV as a gay man.
At that time, 2003, we sort of knew that ART was a miracle and it stopped people dying. But there were all sorts of issues with drug toxicity and drug complexity which we didn’t fully understand. It wasn’t a time where there was one pill once a day and we were really struggling with what were the best regimens for people. We’d taken care of people from dying but the regimens were difficult and clumsy, lots of pills, lots of side effects, and that’s what we were trying to refine. And Craig was one of the people who volunteered to help us do that.
With Craig and I, we couldn’t be further apart in terms of what we’re passionate about outside HIV, but there’s that bond there. I have this very positive feeling towards Craig, what he stands for, he doesn’t hide anything, he’s positive about his sexuality and he wants to achieve the best for the situation for HIV positive people and he’s not afraid of saying so and so on. I really very much admire that, and I guess I warmed to him because of that.
I think there’s always something light-hearted that bonds a relationship, whether it’s sexual or friendship or family or whatever, and I think in our case, it’s because we’re both Cooper. My nickname through university was ‘Coops’ and Craig’s nickname was also ‘Coops’ so we have this bond – I’m ‘Coops 1’ and he’s ‘Coops 2’. And that’s an important bond and that’s the basis of an understanding and a relationship.
I still look after several hundred patients. And for me, that’s been a really important aspect of my career. I think as a clinician scientist you can’t work out what to do and what the big questions are without actually providing excellent clinical care. And that’s what I’ve always encourage my colleagues to do – that excellence in clinical care and trying to understand what are the issues with people and what makes them tick in terms of their infections and treatments. This is critical to developing getting the best outcomes. And I think that’s what impressed me about Craig is that’s what he’s passionate about – it sort of fitted in with my notion of clinical care.
I guess one of the things for me for looking after people with HIV is having these relationships over many years with people some of whom I’ve looked after for 20 or 30 years. And you really feel part of their lives. Sometimes you hear stuff that is incredibly confidential and I feel tremendous privilege that respect is translated to the fact that they can confide in me so many complex things that they may not have told their family and friends and that’s a real privilege about a doctor-patient relationship.
With Craig, I feel that sort of bond, I have a very deep professional relationship with him because of some common understandings and respect for each other that we have.
Interviews by Reg Domingo
Tuesday 1 December 2015