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Tuesday 14 April 2015

Openness, honesty and a little confrontation

Posted in: Health & HIV, Features
By Jay Bennie - 15th April 2012

Shaun Robinson
When the NZ AIDS Foundation was formed in the mid-1980s people were stressed, friends of all ages were dying, the gay communities were traumatised. It was a terrible time.

But it's a different environment in 2012. New-ish CEO Shaun Robinson has had over a year to come to grips with and start re-moulding the organisation and and how it operates. It's his baby now. So, how important is the NZAF's work in 2012?

"I think it's extremely important," he says. "The HIV epidemic is still very much alive and well. It's had a huge resurgence in the last ten years. That upswing since about the year 2000 shows you that HIV is like a tiger in that if you are winning you get it by the tail and you hold it down but if you let go it will take off again. So even if we get annual diagnoses down to, say, under twenty per year, and I belive it's possible you could get them down to zero, we will need to keep on working. That won't be an end to the work because if you stop being vigilant then it will take off again. We would have to get to the point where there was no virus in New Zealand... and even then you would have to be vigilant to ensure that it didn't get back into New Zealand. So the job is different but I think it is just as important as it ever was."


Nearby, our Pacific Island neighbouring nations are largely HIV-free, although the horror story of Papua New Guinea's HIV disaster is a salutary warning of the importance of taking HIV very, very seriously. But our small neighbours tend to be poorly resourced to fight HIV. With our better resources and the large Polynesian population integrated into New Zealand life we are probably the nation best placed to assist the Pacific Islands.

Robinson sees working with the Islands, which became a goal under his predecessor, as a legitimate role for the NZAF, "so long as we don't take resources away from combating the domestic epidemic. All the work we do in the Pacific is funded from international funding sources that are focussed on non-first world development so it is money that couldn't be used in New Zealand."

The interconnectedness of New Zealand and these nations is another reason for the NZAF taking a proactive approach. "There is a very strong rationale for working in Samoa and Tonga, for example, because of the flows and the links between the communities. There are all sorts of benefits. We have gained a lot of mana and access to New Zealand's Island communities beause we are known to be active in the home countries, and vice versa. And by being in these countries you can learn a lot about what the experience of the Island communities in New Zealand is based on. And there is a lot of movement of people between here and there. If an epidemic breaks out majorly in the Pacific it will affect New Zealand."

With very little public health infrastructure and the subject of sex frequently taboo in the Islands the Foundation has to take things one step at a time. "It's difficult work and we are aiming to expand it because we basically have only one staff person trying to support a number of community organisations in different Pacific Islands," says Robinson. "You've got the tyrany of distance, the fact that some of those organisations are entirely voluntary so they've got very few resources, we've got cultural differences we have to overcome, so it's not easy... but I think we are making progress and I think that the UN and international funders look at what we are doing they are saying: 'That's a credible organisation and it is part of the Pacific,' because New Zealand is part of the Pacific and I am hopeful that they will get behind us to do more."


One of the biggest and most influential funders for HIV work in the Pacific is UN AIDS. When its global boss Michel Sidibe was in New Zealand last month, escorted by his own boss, ex-New Zealand Prime Minister Helen Clark, there was a heated disagreement between Robinson and Sidibe regarding progress in treatments of HIV infection and how this might impact positively on prevention. So heated in fact that Clark had to intervene and calm down the debate. It was a tense and awkard confrontation. has offered Sidibe the opportunity to put his case more publicly but his UN AIDS organisation has not responded. However, the point of difference between the two organisations is crucial in how future prevention work will be done, particularly in the Pacific Islands, where the UN's development assistance gives it much say in how programmes are carried out.

"It's around the role of medication and reducing HIV-infected people's viral levels and the impact that's going to have in reducing the spread of HIV," explains Robinson. "There have been a number of scientific trials that have shown that with HIV people on treatment who have got down to a very low viral load, their chances of passing on HIV are significantly reduced." In fact the rate that HIV was passed on by people whose viral levels were suppressed by medications was 96% lower than for untreated people. It sounds great and Sidibe was enthusiastic that this could be the dawn of a whole new era of fighting HIV by suppressing it in already-infected individuals. The NZAF is more cautious. Much more cautious.

"There are some real problems," says Robinson. "What happens in the struggle against HIV is that there are vested interests such as the drug companies. While they are doing a lot of good in introducing new treatments, they are going to love it if treatments become a major part of prevention work because they'll get to sell a lot more drugs." He's also aware of the historical tendency for new advances in HIV prevention and treatment to be trumpeted well above the level at which they subsequently deliver. "People love to jump on the bandwaggon of the next silver bullet that's going to 'solve' the worldwide HIV epidemic."

And there are a number of practical, biological and personal issues surrounding HIV infection that lead the NZAF to adopt its conservative stance. "There are a lot of different aspects to HIV world-wide and you have to be really careful about taking what might be working and saying it will work in another setting. In this instance the key thing that we are concerned about with the notion of treatment being a major form of prevention is that the trials were prediminantly done with heterosexuals. There were some gay and bisexual men involved but they were predominantly heterosexuals. It is really important to remember that the biology of how HIV infects heterosexuals is fundamentally different to the biology of how most gay men contract HIV." He's referring to the fact that the lining of the arse is much more likely to let HIV through than a vagina would. Almost all of the HIV epidemic in New Zealand is amongst men who have anal sex with other men. "So you just cannot extrapolate from what works for heterosexuals to what works biologically for gay men."

Underpinning these concerns are a number of basic principles which indicate  that treatment for prevention is a dodgy proposition. "For a start you have to know you have HIV to be on treament. We all know that there is a six-week window period where HIV doesn't show up in HIV  tests. And that is also the same period in which you are most infectious. So, automatically you are not going to be on treatment during the period in which you are most likely to be infecting other people. The other thing is that your viral load," the level virus in the body including in blood and semen, "will fluctuate depending on your health. So you would virtually have to be testing almost daily to know what your viral load was to really be able to use that as a prevention technique."

And there are other worries. "Even in that clinical trial there were people that didn't stick to their treatment regimes to the point that some were lying about how much of their medications they were taking, because blood tests were done and showed that the level of medication was lower than it would have been if people had been taking what they said. So you have to get a large part of the population fully compliant with their treatment."

"There are many many holes in the concept of treatment for prevention. I felt that I had to disagree with Michel Sidibe because he was taking, I think, a very positivist approach to this. In parts of Africa where it's predominantly a heterosexual epidemic, and where there isn't a high condom culture, and if generic drugs are available then it might be a viable part of a strategy but not in New Zealand. So to make generalisations that this is the new wave of prevention is extremely dangerous. The other thing is that as soon as people hear that there is any resistance to using condoms then they will stop using condoms. Then we'll end up, at best, being no better off - but it's far more likely that the epidemic will take off again because of all the problems with treatment as prevention. So, our view of it is that it is [only] an added benefit of getting positive people on to treament as early as possible for their personal wellbeing - and that's what we're advocating about and why we work in with the clinicians and the Ministry of Health and others to try and get more uniformity of approach to when people can access medications an hopefully get them on medicions earlier. That they are less infectious for more of their time is going to be a great benefit for individual people but that's not a strategy for prevention. Our strategy for prevention is still a condom and lube every time."


Robinson's stance in some ways reflects the always delicate balance of the relationship between HIV prevention and support programmes, both of which the NZAF provides.

"I don't think there is ever a perfect balance. There are two aspects to our mission. Our mission says really clearly that we are here to prevent the spread of HIV and to support people who are living with HIV. I don't think the two are necessarily in conflict but there is a kind of to-ing and fro-ing that goes on there. Public health is about looking at what is going to work out best for most people at a population level... what's the best strategy we can pick to have the biggest impact on preventing HIV. And you've got to pick the winner. I think countries, and Australia is kind of going down this route, that go: 'Well, it's up to you and there are a range of options you can choose,' they are going to lose the fight."

The NZAF has always been quite simple and straightforward in its core message: just keep on using the condoms and lube. For 25 and counting years it has reinvented the same basic message, that condoms prevent the spread of HIV.

"People may feel that we sound like a cracked record but we're a cracked record because that's the right thing to do. The personal health side is very much about 'What does the individual need and what options do they have.' Our different teams do attract people with different mindsets and perspectives and that probably helped to drive some of the conflicts within the organisatiopon in the past. But actually those mindsets are not that hard to meld and to get working together, providing you have the will to do that."


One of the fears of those critical of the NZAF in recent years was that it was increasingly aloof and out of touch, even that it was antagonising the very people and organisations in the gay communities that it should have been collaborating with. For example, is Robinson's NZAF now tapped in to the psyche of individual sexually active men who haven't yet got HIV and those who have been recently infected?

"We are tapped in and we're trying to tap in more. For example, our counsellors are coming together for two days in a couple of weeks' time and there will be some papers presented there from within the organisation about how do we work with hard-core barebackers for example. What do the counsellors know and how can that be useful to the community engagement team. We now have, again, a positive man on our board, we have a much stronger relationship with Body Positive than a year ago and there are times that we hear stuff in our conversations with Body Positive that I don't think we hear as the NZAF because we're probably perceived sometimes as the 'condom police.' So through our relationships that have expanded over the last year I think we are better tapped in. I think the challenge is to be more and more tapped in."

By the second half of this year, says Robinson, the NZAF will be starting to review and evaluate its current strategies. Radical changes seem unlikely. "Given that we have had the first annual drop in diagnoses for a decade for gay and bisexual men we'd have to be a little bit crazy to completely reinvent what we're doing. The feedback would tend to say 'Keep doing what you're doing.' But we definitely want to refine it and think about what feedback we've got, to think about where we might be missing out and where we need to go next. And in doing that there is a real challenge to make sure that we are listening to and are connected to as many sources of information and dialogue as possible."


But Robinson is pragmatic in his view that relationships and strategies aren't what the NZAF is ultimately judged on. "The primary thing people are looking for us to do is to perform. If the NZAF is not delivering the goods then people are quite rightly going to be all over us like a rash. In that process we really do have to be open to collaboration and working together. And we also have to be honest when we make mistakes. Both of those things have happened and as far as I can tell people have really appreciated that. Given that we are now working to a very high standard and it seems to be working, honesty and openness in our relationships as an organisation have put us in a position where our relationships are pretty mature and adult now."

The Foundation has traditionally taken the position of never publicly claiming any responsibility or taking any specific credit for good yearly HIV infection figures on the basis that if the figures subsequently go bad it could come back to bite them on the bum. But Robinson nudged into that area earlier this year when the spectacular drop in new diagnoses was revealed, by saying it would be wrong to assume that the NZAF's work wasn't part of the good result.

"I stand by those words. If you look at the volume and quality of what we have done in the last fourteen months I would say that it's incredible to think that we hadn't had an impact. What I would say is that the result for 2011 was so big in a downwards direction there is a strong probability that for 2012 it will actually go up again. I won't think that that means that we have failed provided that it doesn't bounce back right up to the levels of 2008, 9 and 10. If you look at trends they never go up or down in a straight line, they always bounce around, Hopefully the whole thing is heading down but it will be several years before we know that. It's a bit like a ball bouncing down a staircase, it bounces up on its way down. The danger is that the 2011 year figure was 59 new infections and if next time it comes in at, say, 70 people might say we're failing. The 2011 result was "encourging. I don't think we can say it is a trend just yet but it is certainly very encouraging."

In the third and final part of this interview next weekend Shaun Robinson discusses the Foundation's level of direct volunteer and membership support, the challenges and highlights of the past year and gives a glimpse into how his personal and professional lives co-exist.

Jay Bennie - 15th April 2012

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