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Sunday 09 April 2017

Looking back and looking forward

Posted in: Health & HIV, Features
By Jay Bennie - 22nd May 2016

Shaun Robinson arrived at the NZAF five years ago at an extremely difficult time for the organisation. A much-needed process of change and reinvention being carried out by his predecessor was starting to take it's toll on staff, morale and relations with other glbti community organisations.

It was a situation which needed calming down and a sharp-eyed stocktake of what should remain and what should be jettisoned. For Robinson that meant being clear about the organisation's core role.

“I saw my job as very much getting on with what the NZAF is here to do and that's to halt the spread of HIV and support people affected by HIV,” he says.

“My starting point was to be as focused as I could be on achieving those things. Essentially I said to everybody: 'This is what the organisation's here to do and I'm assuming that's what you are all here to do, let's all be really be clear about being committed to that and also be really clear that we all do stuff that contributes to that.' And I think that got everybody back to focusing on what was important... and also starting to appreciate each others' contributions. In some ways it's quite simple because most people were here for the right reasons and were prepared to put some of the difficulties of the immediate past behind them and get on with doing with they really wanted to do, to do something about HIV.”

Some people had to go and some things had to change. It would have been easy for the new chief executive to be seen as a hatchet man. What did Robinson do to be sure he didn't make things worse or be seen as just another part of an ongoing problem?

“I had some advantages... I came from outside the gay community and outside the HIV sector so I didn't have any baggage or history or involvement in controversies that may have been a problem. I think honesty and trying to be real about things is important and to set some very high standards. And laying that out to the organisation and to the wider community that this is the mahi, the work that needs to be done, the mission, now there's no excuses for not doing everything to a very high standard and the best we possibly can because the work we do is too important and too significant. If you start from that point everything else sort of flows on.

“Communicating that stuff clearly and consistently was important. And then not being afraid to deal with any barriers or issues that might have been stopping us from performing well. We had to get the confidence of the community back, because there had been some quite substantial changes... the whole beginning of the social marketing approach to condoms which wasn't based on fear but was based on promoting a very pro-sexual and upbeat approach was very new and there were quite a few people who found that quite jarring and weren't convinced it would work.

“There'd also been a sense that the different parts of the organisation were working quite separately and weren't communicating well. So we collectively identified that we couldn't achieve what we needed to achieve for the community and do it well unless we were all pulling together. And that meant setting up some quite simple things like getting everyone in the same room to talk about how things were going.

“They're not rocket science but they're things that work very well. There are always going to be some people who find it hard to change from the way things have been and you have to be prepared to be firm that change is needed and if people are not able or willing to make those changes then maybe it's time for them to do something else.”

The Issues Robinson faced weren't only internal, they were external too, with the community in general and with some of the community organisations, and HIV-positive peoples peer support and advocacy organisation Body Positive inevitably comes to mind. With time Robinson managed to re-build workable links to those organisations and take the heat out some very tricky situations.

“Again I think honesty and being upfront was important, acknowledging that some mistakes had been made and being prepared to look at some things again. When relationships get fraught it is easy for people to start digging their heels in... and that is on both sides of any relationship. Sometimes you need to pull back from those difficulties and ask 'Will there have to be some compromise here?' We made some new arrangements around World AIDS Day and how the funding was going to be used and that created some space for new approaches to how we worked together.

“But I was very firm about what I expected in relationships with other organisations. I expected that the Foundation would be treated with honesty and respect and if there were any differences of opinion they would be dealt with in a mature way. I've always been very firm about that. I think that combination of being willing to admit to past mistakes, or errors as they occurred, but also being flexible, I think that set the framework for our relationships in the community. And I think the wider community that we needed to communicate with again more fully about what we are doing and why we were doing it... I was very lucky that we had very good people running the Get It On [prevention] campaign and its first year of operation was very, very successful. That helped a lot. We had a 36% reduction in new infections in 2011 so that helped to bring confidence to the community that the changes the organisation was making were actually good for the community.

It took a couple of years to settle things down at the NZ AIDS Foundation, but as the mood changed what was Robinson's next objective?

“Getting everybody paddling the waka in the same direction was the first thing. Then it was making sure that we were doing the things we were doing as well as we could. Some of that was around getting the teamwork working much better but then it moved on quite quickly to how do we deal with the changes to the science and the opportunities that were there for addressing HIV. That was a tricky couple of years because the science was changing quite quickly and some of the outcomes of the science are controversial to this day... I still get people on the one hand asking me why I'm in favour of PrEP [a treatment technique whereby HIV drugs are administered to people at risk of contracting HIV] and why can't we solve the whole epidemic with condoms. And others in the community suggest we should be storming Parliament and demanding that PrEP should be funded tomorrow. There are still some pretty divergent opinions. We had to work through over a couple of years what the best ways to use these tools were in the New Zealand context... and we needed to make sure that making changes was going to be beneficial rather that take us backwards. It was a tricky few years but at around the beginning of 2015 it became very clear that the combination of continuing with the condom approach and bringing 'test and treat' and some use of PrEP, along with addressing stigma and human rights, that is what will finally end the epidemic. Steering through those decisions and getting good solid buy-in from within the organisation and the wider sector, that was the next big agenda.

And yet, despite the undoubted successes of Robinson's tenure at the NZAF there are still some lingering concerns. One is the low priority given to HIV by our politicians and the funding applied to HIV prevention. And we are still seeing a continuing increase, even if it is very small, a continuing trend upwards in the annual number of new HIV infections. Does it trouble Robinson that as he leaves the NZAF we are still facing those problems?

“Absolutely. All of those are things I totally wish were different and I think they can be different. At the point that I am leaving I am pretty clear that unless the government steps up and provides more resources, not necessarily to the AIDS Foundation specifically but to the response to HIV, by getting rid of the CD4 threshold [the point after diagnosis at which drug treatments start – sometimes a delay of years during which an infected person remains infectious] and if the new $154 million being put into Pharmac doesn't lead to the removal of that threshold pretty quickly then I think the community has a right to be very angry and to make the government very aware of that.

“Linked to that there needs to be a national approach to increasing HIV testing. An organisation the size of the NZAF, while in my time here we more than doubled testing, we can't do enough and there's no way we can be the testers for the whole community or New Zealand. And of course PrEP is going to have to be considered and potentially it is going to have to be funded. It's been a very interesting in the last few weeks for me because exciting and interesting stuff has been happening right up to these last few days... there's been a new study come out looking out at the epidemic amongst gay and bi men in Denmark and it's shown that 'test and treat' does work. They have increased their testing in the community a lot over the past fifteen years and in 2006 they removed the CD4 threshold completely so anyone who is diagnosed can get treatment right away... and they are only one of the countries in the world which has the number of new infections in the gay communities going down. That can be directly traced back to the availability of treatment and the increase in testing.

"So we now have very real evidence from the real world that this works and until the government is prepared to get on board with changing the policies and making these things happen we are only going to be able to contain the rise in the epidemic. I don't see that with the resource and the policies that are on offer right now we can turn it around. But it's not going to take much investment from government to change those things and if they are changed we can be on the same path as Denmark and looking forward to the end of the epidemic.

In his World AIDS Day speech last weekend Robinson urged the glbti community to become more involved again, to establish an energy for improvement and change. What, more specifically, does he believe is needed from the community?

“Getting excited that with these new tools and condoms it is now possible to end the epidemic and that's not a pipe-dream. It's actually possible. The community needs to get enthusiastic about that and get behind it. It's quite a big change. We're all saying to the community now that condoms are the best thing you can do but if you really struggle to use condoms then there are other things you can do to avoid spreading HIV. You can test frequently and if you are HIV positive you can get on to treatment and adhere to your treatment and for most people that will bring your viral load down [leading to better health and a much-lowered change of passing on HIV]. And hopefully there will be the option of PrEP. People need to make that personal commitment and get on board

But the other thing is the community should be we are that this reality is in sight but we can't quite touch it unless the government comes to the party. That's the next challenge for the community and the AIDS Foundation. Within the next few months we should see some really positive signs from government but if we don't it's time for the gay community to be see and heard in quite a stroppy way again. Because it's not good enough for the government to say it's ok for around 100 gay and bi men a year to get HIV, considering it's incurable and a life-long illness. It's just not ok especially when there are ways we can stop it. And if we're not given the tools to do it then be angry.”

As a straight man, what are things Robinson learned about the gay communities and the way we are dealing with HIV and other problems in our midst?

“I've learned an enormous amount. A lot has been interesting and fun, and sobering. I had to go through a number of thresholds of learning about gay sexuality since I first arrived. I still remember looking at a t-shirt worn by one of our researchers which had an interesting pattern on it and as we were talking I was trying to work out what it was and then it dawned on me it was a circle of guys all fisting each other. There were a number of things like that. I found it at times confronting, different attitudes to sex and sexuality... but that stimulated growth in myself. I've had to ask myself about sex and the role of sex in life and I think that's been good for me.

“The community has changed enormously over the thirty years of the HIV epidemic and a lot of that is due to its successes such as law reform, marriage equality, much more acceptance of lgbti identities and rights than existed thirty years ago. At the same time homophobia and transphobia are still very much alive and well in New Zealand. So you have people who have a vast range of experiences of what it is to be gay and what their life has meant. So there are fewer situations and experiences that unite the communities that years ago. I think the process of coming out is still an issue that almost every gay man has strong feelings about and identifies with as a need in terms of support for people.

“I would like to think in that re-energising people around the end of HIV the community can also be energised around what it means to have good health, not just sexual health but mental health, emotional health, relationship health... I'm not suggesting there's a particular model for that... but when you look at the amount of syphilis and gonorrhoea that are in the community, the amount of suicide, drug and alcohol abuse, gay and bi men are still dealing with the impact of a hetero-normative society and what is often the trauma that comes from being a minority - and often an oppressed minority. I think those fundamentals are still there but in some way the community has less key things to consolidate around. I hope that the possibility of ending HIV, and HIV has been the most galvanising threat to the health of gay men, that if people can get excited about ending this then that energy can keep going and there's no reason these other health issues should be impacting more on gay men than on straight men. [The gay community] should continue to work towards true health, true acceptance and true strength and what it means in this day and age to have those things.

What skills, attitudes and philosphies will Robinson be taking in his executive toolkit from his NZAF work to his new job as CEO of the Mental Health Foundation?

“There are a lot of similarities,” between the two organisations and their work, he says. “It's an organisation that has a lot of focus on preventing mental ill-health rather than trying to cure or treat it. And of course disadvantaged and marginalised people experience stresses and traumas that contribute to mental and psychological distress. There is a lot of overlap, a lot of people from the lgbt communities are involved with the Mental Health Foundation in one way or another so that's a bonus for me.

“Obviously I've learned a lot about the notion of public health while working with the AIDS Foundation, that's about how do you lift the health of a whole community rather than just focus on the health of individuals... and how do you influence the ideas, the behaviours and thoughts and the conditions in which whole communities live so that people remain healthier. And I will certainly be bringing all that to addressing mental health.

“One of the things I will really cherish from my time with the NZAF is the honour of being allowed into the worlds of different parts of the gay community that weren't my natural community. One of my abiding memories was my first transgender remembrance service when I learned that transgender people are murdered at a higher rate than anybody else in the world.

“And when I met with people who have lived with stresses of their own internal struggles but also in terms of acceptance, violence... being invited and accepted to bear witness to that is something that is very moving for me. Similarly, with the takataapui community and the gay community in general, I think being allowed to stand alongside people and get some inkling of their experience has been very important. I will continue to take that with me.

“Standing alongside people and learning what their experience is is a very important thing to me."

Jay Bennie - 22nd May 2016

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