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Pride and concern - the growth of the NZ AIDS Foundation

Wed 16 Nov 2005 In: HIV

Warren Lindberg As executive director of the NZ AIDS Foundation from 1986 to 1998, Warren Lindberg spent over a decade building bridges across the political spectrum and engaging the community in the fight against HIV/AIDS. Can we learn from history? Warren Lindberg spent over a decade at the helm of the New Zealand AIDS Foundation. He took up the mantle at a time when information on the disease was so scarce that, in one case, a hospital phoned Gayline to ask how to deal with an AIDS patient. He left in 1998, at a time when infection rates were so low it seemed the HIV epidemic might almost have been eliminated altogether. New Zealand's response to the HIV epidemic has been one of the most successful in the world, something that can perhaps be put down to the tireless, reasoned advocacy of the Foundation and health professionals, and a willingness to listen by politicians, the media and, most importantly, the community which is still most affected by the disease – men who have sex with men. By 1984, volunteer AIDS support networks had been established in all of New Zealand's main centres, which men like Bruce Burnett and Ray Taylor had set about creating. A significant gay community group in Wellington included Phil Parkinson, Bill Logan and Bill Edginton. In Auckland, Tony Hughes – still the Foundation's Research Director – formed part of another group, along with doctors Mike Pohl and Ian Scott. “The early gay community response was enormously important,” says Lindberg. The government of the time eventually agreed to give money to a gay community organisation, provided it had reliable trustees. It was a time when homosexual sex was still illegal. “The government was being cautious about being seen to give money to a gay community organisation,” Lindberg remembers. Nevertheless, by April 1985 they had agreed in principle to fund AIDS clinics for palliative care, and a further grant was made for a prevention campaign. “The first prevention campaign the AIDS Foundation did was based on Tony's work, and the concept of the traffic lights,” says Lindberg. “The remarkable thing is that in the 1990s when Tony went back and reworked through what we had learnt in the ten years about the modes of transmission, there was very little change to the traffic light model. Red was obviously for things we knew were unsafe, green was for things we knew were safe, and orange for things we were unsure about. It was remarkably good, and it was very good information for people.” Preventing the spread of a fatal sexual disease in an environment where the sexual activity of the most at-risk group was illegal was seen as the biggest hurdle. The Foundation knew that the creation of supportive environments would be instrumental in mounting a successful strategy. “The view that social marginalisation was a fundamental issue was held by most of the board of the Foundation when I was appointed, and it was certainly a view that I brought with me,” Lindberg says. Fortunately, the first large-scale community meeting in Auckland to discuss HIV prevention amongst MSM happened on the same weekend that the World Health Organisation (WHO) held its first meeting on international health promotion. At that meeting a model known as the Ottawa Charter was devised, which prioritised healthy public policy as an area for action in health promotion. “You have to decriminalise people's sexual activity so they can be open and honest about it without fear, and we can be open and honest about it without being censored and restrained,” Lindberg says. “It was hugely helpful in our talks with politicians to have a WHO-approved framework for the approach that we could take. It was the track we were heading down anyway, but this gave us that approval from the system.” THE MEDIA AIDS was a major issue in the eighties, and as with all major issues, the media was on top of it. Lindberg often found himself the centre of attention on contentious issues. The religious right was heavily involved in the campaign to stop homosexual law reform, and the AIDS Foundation was seen as the personification of all that they feared. Lindberg could see his new role was not just going to be about smoothing the pillows of dying men, it also meant fronting up publicly and politically. Media coverage, for the most part, followed a grand Kiwi tradition of support for the underdog. “The media in New Zealand were a whole lot more sensible about AIDS than the sort of stuff than you got in the UK, Australia and the US,” Lindberg remembers. “There were, of course, some that took the line: well you know this is all a disease of dirty homosexuals. But we cultivated the relationship with the media. I was always open, I never refused to discuss the issues with anybody – including [the notoriously salacious tabloid] ‘Truth'.” Lindberg remembers a number of journalists coming through the NZAF offices, including “a particularly good reporter at the Herald who came in and pored through our files and wrote backgrounders for the back page of the Herald. She was great.” He fears that these days journalists no longer have the time to do such research, something which has been reflected in HIV coverage of late. Eschewing the adversarial approach in favour of reasoned advocacy sometimes worked miracles. When the editor of the now-defunct Auckland Star ran an editorial slamming a programme in schools that informed students about issues surrounding gay and lesbian youth, the Foundation got in touch and asked for an appointment. “Tony Hughes and I rang him up and asked if we could come and talk to him,” Lindberg says. “We went and talked to him, he listened, and the next day he wrote an apology. We couldn't believe how easy it was!” The Foundation built bridges whenever possible, setting up a Media Awards programme to reward good coverage of HIV/AIDS issues. “I had a good media adviser called Liz Greenslade early on, and she organised a sort of workshop for contacts in the media that came to the Foundation offices. We did a presentation, gave them some food and drink as you do with the media in order to get attention, and set up some good relationships.” “I think the responsible media attitude was hugely encouraging,” he continues. “It meant we didn't live in constant fear. There was always a certain amount of nervousness, but we didn't live in constant fear of the media. I remember when I retired from the Foundation, and Paul Holmes was the first person to ring me and ask me to talk on his ZB programme in the morning, and I just realised how affirming and supportive he had been. He's the sort of guy who if he'd got the wrong end of the stick could have destroyed us.” But some did try. “There were some arseholes. Some of them are still there. Talk radio was never a comfortable arena, and still isn't. So what's new?” he laughs. “It was really very heartening to have the kind of media support that we got, and it was also heartening to have political support.” POLITICIANS Getting the government to sit up and take notice, however, was far from easy in the first instance. The first hurdle was lobbying for rollover funding from the then-Department of Health. “We had the Department of Health saying, look there's this fatal epidemic heading our way, here's $100,000 – fix it and don't come back for more,” he laughs. “When you look at the fuss being made now over avian that point in time, if you looked at the spread of AIDS, the rate of spread was exponential. If you did the maths... we had epidemiologists in New Zealand predicting 60,000 deaths within a couple of years. The response was pathetic really.” Fortunately, those numbers did not pan out. “That didn't happen for a variety of reasons, and I have no doubt that one of the reasons was effective interventions in the gay community,” Lindberg continues. “And the AIDS Foundation can't take all the credit for that. That was about the gay community taking responsibility, in a number of ways.” But the Labour government of the day were very receptive, and with astute political brains on the board, the Foundation was not shy about addressing the issue at a political level. When National were elected in 1990, there was great concern that the Foundation's political relationships would sour. Instead, they flourished: “It was even more heartening when National was elected in 1990 and we had Katherine O'Regan as an Associate Minister of Health and a very effective advocate, Jenny Shipley in Cabinet as a very effective advocate, Doug Graham as the Minister of Justice who changed the Human Rights Act to include sexual orientation and the definition of disability that included HIV/AIDS.” The crucial lesson learned during these years was the importance of not allowing the Foundation to become a political football, and HIV/AIDS to become a partisan political issue. “The important thing to realise with any political party is they're not monolithic, and you have to do the rounds,” says Lindberg. “You have to go in and get to know people. There's an old rule in fundraising, you want to make sure the first time they've heard of you is not when you're asking for money. It's the same in politics.” Having already door-knocked every MP during the homosexual law reform debate, the Foundation then took on the mammoth task of advocating for needle exchange programmes. By 1987, the HIV epidemic among injecting drug users (IDU) was exploding in Australia and the United States. “The select committee process for that was of critical importance,” Lindberg remembers. “I went to the select committee to give the Foundation's submission, and I took with me Gary McGrath, who was one of the first people with HIV on the Foundation board. Gary was a gay man who was also an injecting drug user. The person sitting nearest to us at the committee hearing was Graeme Lee, a man in total opposition to everything we stood for.” Lee, one of the arch opponents of homosexual law reform, was then an MP for National. He would, much later, lead the Christian Democrat Party in a 1996 coalition with convicted child rapist Graham Capill's party, Christian Heritage. “As we gave our submission, I stood eyeball to eyeball with Graeme Lee, and the penny dropped that he was in the presence of not one, but two homosexual men, one of whom was an injecting drug user,” Lindberg remembers. “Judy Kiel, who was the chair of the committee, made sure that Graham had every opportunity to ask every question that he wanted to, that he was treated with respect on the committee. We looked him in the eye and answered his questions. In the end we got bi-partisan support.” The Minister of Health, Michael Bassett, announced on April 1st 1987 that he would move to decriminalise possession of needles and syringes, and introduce the needle exchange programme. That same day, the Foundation released information about the first three IDU-transmitted HIV infections in New Zealand. Within twelve months, the needle exchange programme was up and running. It was another triumph of epidemic management. What could have become a nasty political issue was discussed reasonably, and the Foundation was successful in implementing legislation that was needed. “It didn't become the nasty partisan issue that some things more recently have,” Lindberg says. “The community's changed now and doesn't see the need to engage with politics the way we felt we had to twenty years ago.” National was still in power at the time when treatments for HIV were becoming a reality. At first, there was a threat that New Zealand might be left out in the cold. “Pharmac announced that it couldn't afford to fund protease inhibitors,” Lindberg remembers. “I heard the boss of Pharmac announcing on the radio as I drove home that there were no more lollies in Santa's sack. I was outraged,” he laughs. “It was quite close to Christmas, and he was saying his budget was spent. So I had him on in the media the next day, and a week later we were meeting. And actually we got on really well.” It was a difficult minefield to negotiate. Doctors found themselves in an ethical dilemma with the treatments, which were essentially experimental, carrying with them a range of horrible side effects. Doctors in the first instance must cause no harm to their patients. “But we also had a client group that said, we don't care, we'll try it,” says Lindberg. In addition, pharmaceutical companies sought relationships with the Foundation in order to sell their wares. “We had some ethical dilemmas about these relationships, but in the end what we managed to do was negotiate a sensible discussion process with Pharmac so that we would make submissions, we would do our own work on new treatments, and we would be taken seriously and our submissions would be considered.” “We also had a relationship with the pharmaceutical companies where they would arrange for a certain amount of free access to experimental drugs, drugs that hadn't been approved in New Zealand,” he continues. “We also negotiated a deal whereby they would fund the treatments officer at the Foundation. So it was a matter of just forming the right relationships and staying rational about things.” In recent months, however, the Foundation's carefully built reputation at a political level is starting to show signs of strain. Openly criticised by National's deputy leader Gerry Brownlee and “PC eradicator” Wayne Mapp over the embattled NZAF board's treatment of race quota proposals and Treaty of Waitangi issues, there's a growing feeling amongst the Opposition that the Foundation is starting to lose the plot. THE FUTURE “We have a gay community now that has so much freedom compared to what I grew up with, and it's fabulous,” says Lindberg. “But it's hard to tell the present generation how much we saw this as a life and death issue.” Lindberg recalls someone in the Ministry of Health once saying that safe sex was a myth invented by schoolteachers. “I said no it wasn't,” he recalls. “It was invented by gay men who felt their lives were at stake. Now it doesn 't feel like that any more, does it? It certainly did back then. There was a huge impetus around homosexual law reform, we'd been so close to it twice in the previous two decades, this time there was a real determination we were going to succeed, and on top of it was the AIDS epidemic. So there was a huge commitment of time, and a recognition that you couldn't just stamp your feet and get what you wanted. You had to really work for it.” Was the impact of AIDS a hinderance rather than a help when it came to winning human rights protections for glbt folk? “Well, it was in most countries of the world,” Lindberg argues. “At that time, other countries were all looking at clamping down on homosexual activity, not freeing it up. We were the first country in the world to liberalise our laws in the face of the AIDS epidemic. And it was successful.” There's a change in the political landscape now, though. We live in age where issues affecting glbt people are tossed into a basket labelled “political correctness”. The patronising phrase “homosexual lifestyle” has been replaced with the equally patronising “identity issues”. “I hear [Herald columnist] Colin James using that term and it makes me cringe,” says Lindberg. “Human rights have got nothing to do with my identity, its got to do with me being a human being.” His passion for human rights issues led him to become a Human Rights Commissioner after leaving the Foundation. “I knew the work wasn't done, but I think I was,” he laughs. “There were some things that were starting to happen which I felt I'd sort of done ten years before, and I thought it was a good idea if somebody else had a go at it.” That doesn't mean he's no longer interested in the workings of the organisation he once led. With 89% of new HIV infections in New Zealand still among men who have sex with men, and in light of a series of controversies involving the strategic focus of the Foundation's board this year, Lindberg has put a remit before the Foundation's annual general meeting, to be held this weekend. It calls for the Foundation to get back to the task of representing and protecting the community most affected by HIV/AIDS – men who have sex with men. The board has welcomed Lindberg's remit, but stops short of endorsing its content. “Warren's remit is particularly timely,” said board chair Simon Robb in a press statement released today. “It provides a challenge to all of us to look at our work and see what we can be doing better. There is always something more that each of us can do.” Sharing responsibility is very important, but taking responsibility is even more important. No-one is more aware of this than Lindberg. His remit belies a deep concern for the Foundation's focus at a time when the HIV epidemic is once again rising. “You're dealing with dynamic complexity and you've got to keep moving to keep up with it,” he says. “I think that we have to completely rethink how we approach AIDS prevention in the 21st century. The message is the same, but people don't make their sexual decisions because of some worthy message. There are a whole lot of personal and social influences on a sexual decision.” What is he most proud of, when he looks back over his time as executive director of the NZAF? “I'm enormously pleased that we got the money. One thing is the fantastic relationship we have always had with the clinicians, the people in the health system. I grew up in an era when we were deeply suspicious of doctors, and yet, all my experiences in the health system were of people who wanted to help, took us seriously, and treated us with respect.” Good data, and sound interpretation of it, is also key. “I'm really pleased that we were the first NGO to get a significant grant from the Health Research Council to do our own research, and that was the start of the Foundation's research programme,” he continues. “That's really important because those factors that affect people's sexual decision-making are 'socially bound. You can't just pick up the social research from America or Australia and think that applies here, because every society is unique.” “I think we can feel proud of our achievements,” he concludes, “but deeply concerned about the challenges that remain.” Chris Banks - 16th November 2005    

Credit: Chris Banks

First published: Wednesday, 16th November 2005 - 12:00pm

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