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Ushering in change for people with HIV - Pt 1

Mon 27 Apr 2015 In: Health and HIV View at Wayback View at NDHA

Just as the HIV epidemic has changed markedly in the last decade or so, with new treatments, fewer deaths, less fear and a greater number of predominantly gay and bi men living with the virus, there are changes afoot within the organisation charged with promoting the interests of the HIV-positive men amongst us. Mark Fisher The appointment of the new boss of Body Positive, Mark Fisher, is symptomatic of these changing times. Born in and brought up in the Victoria, Australia, countryside, Mark Fisher came out as a gay man in Melbourne at age 21 at the height of the terrifying first wave of the epidemic. “I knew I was gay but didn't do anything about it until I was in university and joined one of the gay groups there to kind of transition into the gay world," he recalls. "I was fairly active in the community there in the late 1980s so It was right when HIV was coming into the news, it was very present at that point, it felt a bit scary. “I was studying computer science and when I finished I got a job in superannuation helping banks, making them money. Our organisation got the opportunity to work on a project with the national HIV reference laboratory. I applied to actually transfer into that group that was doing the work, there were only three of us. We were setting up a system to do all the HIV testing on a reference level for Australia and Papua New Guinea. I thought I could make a difference because it was our group that was getting affected by HIV at that time." It's no secret that Fisher has been part of Auckland's Urge Bar, bear scene and that's something that he can trace back to his early days as an out gay man. “I was always at the Laird so it was the leather, denim crowd and I'm still in that crowd.” It's also no secret that at the start of the HIV epidemic it was New Zealand and Australia's leather communities that were the worst affected of the communities which make up the overall glbti community. In fact they were decimated. And much of the early work done to fight HIV was done, or supported, by committed leathermen before they individually succumbed to the then-deadly virus. “I was studying computer science at the time at RMIT and when I finished I got a job in superannuation helping banks, making them money. Our organisation got the opportunity to work on a project with the National HIV Reference Laboratory, I applied to actually transfer into that group that was doing the work, there were only three of us. We were setting up a system to do all the HIV testing on a reference level for Australia and Papua New Guinea. I thought I could make a difference because it was our group that was getting affected by HIV at that time. “When I worked with the National HIV Reference Laboratory we built a system that did all the HIV and HepC testing. One of the people came over from Canada to an AIDS conference in Brisbane, saw what we were doing and was totally blown away by all the work that was going on. I had finished my contract with the lab and was going to be going back into annuities and insurance and I didn't want to be doing that. So I sent Canada an enquiry and said I'm available and would they need some help?" The answer was 'yes.' “They invited me over to Canada to do work, in 1995. It was supposed to be a one year contract and it ended up being twenty years. I moved into working with public health over there and doing all the HIV testing... we built a system that moved from a reference lab where you only do certain samples that are problematic rather than the general testing to doing every HIV test in Ontario." That conjures up an image of Fisher in a white lab coat handling samples, pipettes and test tubes, but that wasn't what he was up to. “No, I'm programming. I built a system that captures all the data. I could actually do the testing, I knew how to run all the machines which was kind of weird because everyone's in lab coats and I'm sitting there running the testing machine because I have to understand how it works in order to automate it and capture all the data. The scale of HIV operations in Canada is huge compared to New Zealand. Even in Ontario, the province in which Fisher was based, the numbers are staggering, as befits an overall population of almost 15 million. In Ontario around 1,000 new infections are diagnosed each year, leading to approximately 23,000 people identified as living with HIV. “In Toronto, with 2.5 million people, I think one in four gay men are infected.” With big numbers comes big funding. “Just our agency alone got about $2m a year from the government. “We had twelve labs across Ontario with a thousand tests a day coming in and of those we would get around a thousand positives a year. And when someone sero-converted we would get those tests and then often they would get viral load testing every three months, and genotyping would also come into that and all that would contribute to a cumulative profile. We would report back to their doctors so they knew what was going on so they could do all the care and treatment.” “We basically built a lab system and all the epidemiology data that came out of that data, so I knew how the intrinsics of HIV works and I worked closely with all the people so we knew closely how all the epidemiology data came out, in terms of trends and where the infection was going and all that kind of stuff as well. And I knew the public health side of it. I did that for ten years. And then another group approached me to come work with them. Initially I said no because I was still doing the work that I needed to do, but I worked for them on a consultancy basis, in a volunteer capacity. But eventually, after ten years, I joined them, that was the Ontario HIV Treatment Network." So now Fisher was moving closer to the area in which New Zealand's Body Positive operates. Unlike BP it wasn't a membership-based organisation. “They didn't have members because we had seventy-three organisations there, twenty were community-based, some were regional or ethnically-based or serving groups like prisoners, and our organisation was provincial.” “Our organisation was funded basically as a research agency at a provincial level. We were given $10m a year to do HIV research. We had a board which had to have at least 51% people living with HIV, as well as clinicians and researchers. Around $4m went to researchers for specific projects or post-doctoral work. In Canada a lot of people had been in this industry for thirty years and they're now retiring out so we're losing a lot of our infectious diseases doctors, a lot of scientists are moving out of the field so we had to encourage people in universities to move into the field of HIV because the money isn't attractive and sometimes people do it more because of their heart. “We also did community-based research where we went out worked with communities,we had a cohort of about 6,000 people with HIV we would follow. With their consent we would extract data from their clinical and medical records and three-hour interviews. There are always issues out there but the data in NZ doesn't exist for things like mental health which is a big one, ageing, access to care particularly in places like the South island. In Canada we were monitoring viral loads and genotyping and comparing that with medication patterns so when new drugs became available we could see if the doctors were prescribing appropriately. And reports on all this could be provided to the Ministry. “We put in a clinical management system..." At this point I can't help but interrupt Fisher. This emphasis on data collection and management, state-wide systems etc. etc. all seems rather remote from the cliff-face where Body Positive has traditionally operated. So where is the link between all of that and this role as the chief exec of BP? “I've always been involved with community agencies in terms of coming up with solutions on how to do things better so that's the kind of thing that I do... I identify problems and come up with ways to make things work. I worked very closely with the Toronto AIDS Foundation which is very similar to Body Positive. I've been involved on many areas, but in terms of the one on one work I haven't done that, I've always been a kind of facilitator person. I don't do counselling, I don't do case management. In the past I've put a case management into agencies so they can manage their people better and then all that data was then held by us and we looked at trends and analysed what was being provided and we've helped them report back to the ministry in terms of what service provision is out there so they could direct funds appropriately so that the needs were met." So what did, this systems, data and reports guy apply for this job? "I think it's time for a change here, I think there's a lot of experience that I can bring because I come from a very different space. I wanted to do something meaningful, that has always been my passion. Since I've been in New Zealand I've been doing consulting and stuff like that and I don't just want to be working for a corporate or something like that. It's just not my thing." Asked to define 'meaningful' he pauses a moment. “I see a lot of things that aren't being done here in New Zealand that concern me. I think there are a lot of things that have fallen through the gaps. I understand there are only four agencies [by and for] people with HIV, it's really small and the epidemic is much smaller here that in other countries around the world. But there are things that just don't get talked about. For instance visibility. HIV here has gone invisible which is something historic. But it's dangerous if HIV is invisible. Two years ago in the Pride Parade HIV-positive people wore [head to toe] body suits because they didn't want people to see them and I think that was really sad." So is Fisher himself HIV-positive? It's a question rarely asked in polite journalism, but in this instance it seems more than appropriate. “No.” One of the strengths of his predecessor, the openly HIV-positive Bruce Kilmister, was that he was seen to be one of the people he was representing. Does that mean Fisher's advocacy will have to be different? “I don't think so. I was asked that question by a peer support group in Christchurch, because everyone wants to know. People who've known me before I was interviewed by the board assumed I was HIV positive because of the way I talk and my knowledge. And it wasn't until later that I actually said 'No, I'm not.'" Fisher pauses then speaks with a quieter but more forceful tone of voice. “I applied for this position because I thought I could make a difference. And then I withdrew, because I'm HIV negative and I wasn't sure if Body Positive was in a space... because it's very much a peer organisation, very grassroots, and I wasn't sure if it was ready for change. I'm coming from a space where things are very different, very visible and, can I say, HIV is not something to be ashamed about." But surely that's easy for someone who's not actually dealing with the effects, personal and social, of HIV infection, to say. “I know, but that's the kind of feeling I get here and that's the change that I want to make. But I wasn't sure if Body Positive was ready to move into that field, to be visible and proud and out there. So I withdrew [from the interview process]. But I was told by the board, and by my predecessor Bruce, that change needs to happen." Why does that change need to happen? "At the moment the majority of the Body Positive funding goes to a few of the members. It's very much a high-needs organisation in terms of direct, one on one support, which is fine. But what happens is that there is a significant proportion of the HIV community that doesn't feel that BP is meeting their needs, and that's where it needs to change." Next weekend in Part Two of this interview Mark Fisher elaborates on the changes he anticipates making at Body Positive and opens up about a very emotional and personal aspect of his life that drives his determination to do everything he can for people with HIV. Jay Bennie - 27th April 2015    

Credit: Jay Bennie

First published: Monday, 27th April 2015 - 3:30pm

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