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Wednesday 08 April 2009

Towards 2010: the NZAF's progress

Posted in: HIV
By Jay Bennie - 2nd March 2009

In 2004, using the latest available information available about the nature and state of the HIV epidemic in New Zealand, the NZ AIDS Foundation produced its Strategic Plan 2005-2010.

It’s not a weighty document, in fact once you get past the elements which are more or less common to all health-focused NGOs, such as the Vision: “A world without HIV and AIDS”, the Mission: “By preventing the transmission of HIV and supporting people affected by HIV and AIDS to maximise their health and well-being”, the commitment to the Treaty of Waitangi and health promotion, the markers against which the NZAF should now, in 2009, be starting to be measured are spelled out quite clearly.

NZAF Exec Director Rachael Le Mesurier
Most chief executives are a tad uncomfortable with their organisation being measured against a five year old “crystal ball” document based on six year old information, but Rachael Le Mesurier, who was relatively new in the top job when the strategic document was produced, is happy to be taken through it goal by goal, criticism by criticism, issue by issue.


But first, let’s explore for a moment the phrase which seems to underpin the NZAF’s recent work and planning. We’ve had “harm minimisation,” “pro-sexual,” “Ottawa Charter,” and many others. Now it’s “social marketing,” a term increasingly beloved of marketers, advertising agencies and organisations trying to convince us to drink better, drive safer, smoke less and get our various bits checked more regularly. It’s so important to the NZAF that Simon Harger-Forde was hardly behind his desk as the Foundation’s newly appointed HIV Prevention Manager last year than he was whisked off to the UK to attend a conference on social marketing.

“There's not one straightforward definition of social marketing,” says Le Mesurier. “People use it in a whole range of ways.” So what’s ‘social marketing’ in the AIDS Foundation's context? ”It takes our health promotion, based on the Ottawa Charter - many people don't know what the Ottawa Charter is, still after all this time, and that's fine, why would they - and it recognizes that we still need to build supportive communities. It recognizes we still need to make individuals informed and supported to make good health choices. One thing social marketing does that I don't believe the Ottawa Charter does, is recognize that despite healthy communities, supportive environments, and good information, people can still choose to put themselves at risk. In the same way that some doctors and nurses smoke. Information and a supportive environment is not enough.

“Social marketing challenges us to work out, for instance, what is it that's motivating those doctors and nurses to smoke, despite all the knowledge of medicine that they have, that explains to them that smoking's bad for them and possibly for other people around them.

"So social marketing forces us to look at what is the benefit for people to do what they're doing now, and what is the benefit that we can offer for them to stop doing what they're doing now, which in the NZAF’s case is having unsafe sex. It's a very simple approach, and it’s the way Coca-Cola, for instance, has managed to sell itself all around the world. The difference is that we're trying to look and see how we can convince, encourage, persuade men who have supportive environments, who have good income generally, whose self esteem may not be much lower than heterosexual men, who have maybe a good income, to want to practice unsafe sex. Why do some continue having unsafe sex and how can we persuade them to change back to safe sex through social marketing.”

Strategic Plan 2005-2010 Goal 1: A reduction in the number of newly diagnosed cases of HIV infection to approximately 50% of the 2003 statistics for all at-risk groups while ensuring the level of testing does not drop below 2003 levels.

In 2003, according to data compiled by the AIDS Epidemiology Group at Otago Medical School, 154 people were newly found to have HIV infection. This was the year New Zealand realised that the already evident upward trend was in fact part of an upward surge. Some of the 2003 infections had been contracted by recent immigrants, but the majority were amongst established NZ residents and of those the overwhelming majority, believed to be nearly eighty depending on the vagaries of sexuality identification, were men who have sex with men.

Le Mesurier is quick to head off any possible implication that there is an ‘acceptable number’ of people with HIV. “We don't want anybody else to become positive. Not one more. We're very uncomfortable with the idea of setting some kind of level of an acceptable rate of HIV infections per year. We did this [Strategic Plan] in 2004, and the most recent figures we had to work with were from 2003. We had a suspicion, but we weren't to know, that 2007 was going to be the worst year that we'd ever had, worse than our worst year before treatments became available. So it's unlikely we’ll make 50% of the 2003 level.”

In fact, the number of annual diagnosed infections has maintained its surge level. 157 in 2004, 183 in 2005, 177 in 2006 and 156 in 2007. It’s looking likely that the 2008 figures, due out mid-March, will show another climb. Is the rising infection rate a symptom of failure on the part of the NZAF? “No, I don't think we're failing,” says Le Mesurier, “because we're dealing with a multi-headed beast that keeps emerging new heads. We haven’t stopped fighting. We are working in every way possible to see if we can at least bring it down... We're working bloody hard to do our best to see if we can bring it down."

Goal 2: All known positive people will receive equal access to fully-funded Medsafe registered drug treatments, when clinically necessary.

Given that the New Zealand health system has historically been fairly even-handed in who has access to what HIV medications okayed for use here, perhaps the more important implied part of this goal is access on a par with other comparable countries, particularly our big neighbour. “We actually achieved this goal, by 2006-7. I was very proud of our achieving it. The irony is that it was a goal that we couldn't have as a fixed mark in the sand because it's actually been changing. There's another treatment that's come out that is now available in Australia that is not available here. And so we're back at saying we've got to work for this goal again.”

So there's no longer any advantage or imperative for people with HIV to suddenly go rushing off to, say, Sydney or London, to get more advanced treatments? “No, the real success behind Goal 2 is that we've had New Zealanders living in Australia and England come home. That has been a stunning success. That they feel that they can come home, have the same treatments, and be where they really want to live.”

The NZAF, however, is not the only organisation which has lobbied for for such cutting edge access to treatments. Body Positive Auckland, the biggest HIV positive people's peer support and advocacy group in New Zealand, believes the NZAF should not take too much credit here. “There are a number of organisations active in this area, including the positive peoples’ groups such as Body Positive, who work independently of the NZAF to get the best possible access to medications,” says BP Auckland CEO Bruce Kilmister. “In fact, the main players are the prescribing physicians who are doing their best to keep their patients well. And the drug companies who want to sell their products here are a strong and active voice. Also there’s the AIDS Medical and Technical Advisory Committee (AMTAC), which now has an NZAF staffer amongst its number. AMTAC has applied a lot of pressure, particularly in assigning priorities to particular drugs.”

However, regardless of who should claim what proportion of the credit, Kilmister agrees with Le Mesurier that “for the most part New Zealand access is on a par with Australia.”

Goal 3: Takataapui and their whanau, Maori staff, Maori clients. Mana Whenua and other Maori stakeholders all report improved commitment from the NZAF since 2004, in implementing the principles of the Treaty of Waitangi (Partnership, Participation and Protection) in both governance and operational parts of the organisation.

At first glance there doesn’t seem to be an easily measurable target in Goal 3. “Well the goal is there,” says Le Mesurier, “it’s about being able to report. And I would expect that by 2010 we will have Maori being able to say that we have got better than we were in 2004. But I must confess we had one hell of a massive detour in the middle of that.”

That ‘massive detour’ was comprised of a ‘perfect storm’ of several elements. The Foundation’s first Maori chair became embroiled in controversy as he was revealed to have bagged his own organisation at a major HIV conference, describing it as racist. At the same time a proposal by the board to institute a quota of board seats for Maori ran into a chorus of anger, including a stinging reprimand from the Foundation’s own kaumatua - who hadn’t even been consulted on the policy. The upshot was that two very high profile Maori board members, including the beleagured chair, were soon gone.

When that venerable kaumatua, Henare Te Ua, died he was not replaced. A number of high profile Maori staff left the organisation in the early stages of the staff and structural shakeup which has only recently seemed to have reached a conclusion. Then there was the realisation that the Foundation was struggling to meet the differing obligations of two separate founding documents with two different interpretations of the significance of the Treaty of Waitangi and the subsequent de-emphasising the way the treaty was interpolated into the new trust deed, and suggestions by a Maori party MP that the NZAF was neglecting at risk Maori. ‘Massive detour’ might even be an understatement.

Le Mesurier acknowledges that “key Maori stakeholders... weren't very impressed or felt a little bit unhappy with what happened in the trust deed meltdown in 2005.” At the time of this interview with the NZAF’s chief executive in early January a discussion group was being convened to help point the NZAF board in the direction most likely to bring closure to all, of these niggling and festering issues. “We're looking at how we can understand and work with the Trust Deed around biculturalism and what that looks like. It’s not easy. So we're just starting that journey now.”

Despite the high profile of the Foundation’s second Maori chair, Hoani Jeremy Lambert, during some of this period, the NZAF was easily characterised as an organisation of white men catering to white men. But appearances can be deceptive. “We've now got more Maori across the organisation than we've had for at least eight to ten years,” observes Le Mesurier. “We've actually just got a regional manager in Wellington who's Maori, and more Maori coming through in other parts of the organisation. We have a Hau Ora Takataapui programme specifically focusing on MSM who are Maori and around issues of HIV prevention, care and support issues as well, for Maori who are HIV+,” she says. The funding for Maori prevention and support initiatives is part of a specific contract funded by the Ministry of Health and therefore not readily subject to pressures from outside the Foundation to either beef it up or scale it down.

But, and it’s a big but, HIV in New Zealand continues to be almost exclusively a disease of white men who have sex with white men. Maori and other ethnic groups hardly feature on the radar - which is, when you think about it, a good thing for those groups. “I'm proud of the fact that we're one of the few countries in the world where the indigenous population is not over-represented in the HIV stats,” she says. “It's very hard to prove it but I would be able to stand up in a crowd and say I think it's been influenced by our work to make sure that Maori are not over-represented.” contacted a number of gay Maori men with a proven commitment to HIV awareness and prevention, to see how they would mark the Foundation’s report card thus far into the 2005 - 2010 strategic plan period. None wanted to do so publicly, citing their status as ex-board members or their past or present, formal or informal, connections to the board (“not really appropriate that I comment on the record”), past employment by the NZAF (“It’ll only look as though I’m bitter and twisted”), a wish to let “whatever process the Foundation has undertaken to address its issues follow its course without interference” or a mix of all three.

But it quickly emerged that the advisory process has not run smoothly. The pre-Christmas group ran afoul, understands, of conflicting personalities and agendas. Convenor Anton Blank and respected elder Hone Kaa subsequently withdrew their involvement. “We were of course saddened by some of these developments, but we are hopeful about the future. We knew from the outset that this process would not be easy, and we want to continue to support communications both among Maori, and between Maori and the Board in order to meet the goals of the NZAF,” says board chair Mark Henrickson.

“We’re planning to meet in April with several Maori leaders with strong associations with the NZAF to find a way of communicating to the Maori community,” Henrickson says, framing this initiative specifically as a response to “the 2007 Trust Deed’s commitment to biculturalism.” Those leaders now advising the Board include Wellington-based communications manager and ex-NZAF Chair Hoani Jeremy Lambert, South Auckland social worker Mama Tere Strickland and Christchurch health worker and part-time Human Rights Commissioner Richard Tankersley. The new system appears to link the advisers closely to the board rather than have them meeting autonomously as the first group had been set up to do.

Perhaps the Foundation was wise not to set too clear a target other than to be able to report something, hopefully progress or even a direction forward. But 2010 is not far away and it is clear that some outside the Foundation can’t wait to see what is reported.

Goal 4: Clear evidence of progress, from the 2004 levels, toward a sustained, supported and appropriate workforce within and external to the NZAF amongst the main providers of HIV and AIDS prevention, clinical and community support work.

Again, those who might be able to comment on the NZAF’s progress on the external part of Goal 4 are reluctant to voice their opinions. We're a relatively small community. However, it is worth noting that one of the main non-NZAF providers of support and clinical work specifically targeted to men who have sex with men is Body Positive Auckland, which received a grant of $80,000 from the Foundation last year to assist with the expansion of their facilities adjacent to Karangahape Road. The Foundation’s albeit risk-averse underwriting of the country’s biggest glbt gathering, the Big Gay Out, ensuring the ongoing viability of that event each year, is certainly a positive piece of community support work, and there are other, smaller events around the country which the NZAF becomes involved in. It is also rolling out a series of satellite testing centres in population areas not currently served by one of their main centre regional offices.

But it’s the internal staffing, and the flurry of resignations and appointments and structural changes and new job titles which has been subject to greatest public consternation and criticism in the past couple of years.

“Yes,” says Le Mesurier, “I think that's fair comment. There's been a lot of change around this, and any form of change can disconcert some people. I'd love to go back and have a look at the way the Foundation was in 2001-2002 [before she joined the Foundation] because I don't know if there was a lot of interest in what was going on internally. We actually didn’t have very many policies, and processes weren't very transparent internally. Which meant that [staff] didn't quite know how they could get professional development support, they didn't know where they could get counseling support for personal issues. There wasn't consistency… there wasn't union involvement, there wasn't a collective employment agreement. It was run more like a fiefdom really.”

“What this has done is bring a great deal more transparency, and has actually established where the perks and benefits are for employees. It's also brought in budget towards professional development that people have taken. Though not all yet, so we've got work to do to make more, to be able to build up their expertise and their professional career with us.”

The biggest number of unsettling staff upheavals at the NZAF occurred around 2007. “I think it would be fair to say it was a very hard year, because there was a lot of change, and there were two redundancies. There had been a redundancy before then, not a lot of people seemed to worry about that, but there was, and I know there had been prior to my time here. But that is a hard thing, to bring about change and have redundancies.

“So in 2008, I think what we've been seeing is talking about a larger workforce… the recent staff survey that we did, which was online and confidential, came back with a really high level of people's satisfaction with working with the mission, with the vision, with their managers… I was surprised by the number of staff who have reported that they were supported by their team managers. What I thought was interesting was again that communication was not great internally, and these are the areas that we need to improve. So one of the things around communication internally is that some of them don't know what their benefits of working for us are. So one of the things we have to tell them better is that there are benefits for working for us.

Critics would say, and some have, that Le Mesurier has gotten rid of all the people that didn't agree with her. That with the changes in staffing she’s increasingly surrounded by 'yes men'.

She smiles. “That's new, I haven't heard that one. I have more rigorous questioning and challenging going on internally now than I've had for a long time. And I welcome it. I've actually got, particularly at senior level, but also in other parts of the organisation, staff who see [their work] as both passion and profession. Who come from the community, but they want to do a damn good job and they want to be able to be professional in doing it.

“So I know that we don't have 'yes people' here. I know that we have far more who are prepared to ask question 'are we doing what we think we're doing?'”

Goal 5: To be recognised by our local, regional and national partners including Takataapui as a credible, comprehensive, quality accredited and innovative leader in both the HIV and AIDS and health promotion sectors.

This goal should not be too hard to achieve. Practically from day one of its existence the NZ AIDS Foundation has had an impressive and envied reputation. Partly this came from the high calibre of staff members it attracted and continues to attract. Partly it stems from the Foundation’s aggressive and innovative work, some visible and some unseen, over the years. And partly its because the New Zealand gay community under its leadership has done better than most comparable nations at keeping HIV under some semblance of control. And yet HIV, in New Zealand as in overseas populations we get compared to such as Australia and the UK, is on the rise again. Unfortunately this comes at a time when our communities are more fragmented than ever, when mass volunteerism seems to be a thing of the past, when the effects of HIV infection are more or less invisible and at a time when we have less and less warning of trends emerging overseas.

“When I joined the Foundation, it had a lot of credibility in the public health sector. People really saw it working within the broader public health principles as a real champion in public health. I think [previous Executive Director, now Green MP] Kevin Hague had actually helped work on the public health bill itself. He was seconded over to public health. So I was very lucky to come into an organisation with that amount of credibility. So some of it’s about working to maintain that credibility in the public health sector.

"Whilst you may be getting the types of feedback you've got," counters Le Mesurier, "I believe there's a lot more people who are engaged with what we're doing. They care. My worry in 2003-4 was that no-one seemed to bother. We had become relatively unimportant. A little bit irrelevant. Which is the wrong place for us to be.

"I think we're seen very much as a leader within the LGBT community, which has its upside and its downside. The downside is that we're sometimes asked to pick up organisations and groups which are on the brink of falling over - 'would we please take them over?' I've never felt that it's the AIDS Foundation's role to be some kind of conglomerate that absorbs lots of small community groups that are not coping or managing with the challenges of volunteers. So whilst we're seen as a leader on one side, I can see that we shouldn't be the only player on the field.”

Others agree. Every year or two discussions emerge somewhere in the glbt comunity regarding setting up a community-based health and welfare delivery or advocacy organisation, but for all the talk and occasional meetings nothing has emerged, leaving the NZAF by default the biggest-funded, best researched and loudest voice of the glbt community, eclipsing even the venerable OutlineNZ, previously Gay and Lesbian Welfare.

In the Pacific region nascent HIV organisations in small island nations have drawn extensively on the NZAF’s knowledge and expertise. “Most definitely in the Pacific region I think when Warren Lindberg [the NZAF’s Executive Director prior to Hague]  was here we had a good presence both in the Pacific region but also globally. He did some amazing work very early on in the 1980s. Warren was involved in setting up some of the first AIDS conferences. I'm very proud of the fact that we've got really good friends in the Pacific. NGO's see us as friends. We help set up the Samoan AIDS Foundation and we're seen as family by the Samoan AIDS Foundation. We're seen as good friends to AIDS Taskforce in Fiji, and to the Pacific Island AIDS Foundation. Ministry of health staff and personnel make it clear that they see us as being hugely influential in the area."

It’s become almost a rite of passage for successive political party leaders in electioneering mode to pay homage to the work of the NZAF and promise not to interfere with its funding or mandate, and Le Mesurier says this respect flows through to the Ministers and health bureaucracy as well. “Recently we've had the real support from the government asking us to go along to do the UNAIDS Programme coordinating board and asking us to go along to the UN high-level meeting on HIV,” says Le Mesurier. “Both of those clearly said that we were considered to have worthy comments to make, both nationally, regionally in the Pacific, and globally.”

In the NGO sector in sexual health too, “not that there's a lot of us fighting to work in the sexual health area, I think we are definitely seen as a leader.”

Goal 6: Clear evidence of changes made per year in all our programmes to better meet the changing needs of the affected communities.

Le Mesurier laughs out loud. “Do I have to address that one? We never stop changing. Do we have to consolidate and settle down in order for us to get on with our jobs? Well the changing environment is going to carry on changing around us. We're not looking at any significant staff restructuring, if that’s what you're suggesting. But HIV and gay men’s behaviour in particular is changing. We've got to keep changing. We've got to have a dynamic wonderful website that is actually dynamic and wonderful in 6 months time 12 months time and 18 months time. We've got to have means with which we communicate with people that's cutting edge, at the front of the latest gimmicky geeky way to go, not 3 years behind. So whilst I'll say that we’re definitely working towards consolidating some of the significant change that we've done internally, I hope we can carry on adapting and changing, because we're going to need to.

“We're going to need to, because HIV is not going away. HIV's got harder, and more complex. The best thing that we can say has happened in the last 20-odd years is that people are not dying in the way they used to. But ironically, it's given us the hardest task.

So where does Le Mesurier believe the NZAF placed in the perception of communities of men who have sex with men?

We can't be all things to all men, but we are actually very different things to different men.

There are gay men who are utterly committed to condom use, and who are grateful for what we're doing, but they don't need to have much to do with us, because they're committed. They're already there. There are those who on the other end of the continuum who never use condoms, who we have always been irrelevant for - who were not using condoms in the early '90's, in the midst of the carnage. In between are the men who may think we're doing a great job in many ways, but aren't able to commit to condom use every single time, so we're not right there for them yet. They may think we are, but we want to be more to them.

“There are men who are positive, and some of them are really grateful for what we do. They're appreciative of the counseling that’s available that they had when they needed it, that the treatment advice was available. There are others that are grumpy, and unhappy that we're not meeting their needs. Sometimes it may be HIV that's screwed up their lives, sometimes it may be other things that have screwed up their lives. But there are no other organizations for them to turn to, so we have those people whose needs we haven't been able to meet.

And the sex on site and social venues, sometimes the only places where men who have sex with men express their sexuality ? Is the NZAF well placed there? “I think it varies enormously. I know there are gay businesses that are pleased with the increase in the level of engagement that we'd had, but there are other gay businesses who are annoyed that we actually try to be fair and work in with their competitors.

I think we need to be focusing at all times on what we're doing and how it helps us reduce HIV, goal number one, and maximize the health and well being of people living with HIV. Sometimes some of those gay businesses may not be the priority for us to get to those goals. I think there is a very grey and blurred line with us being seen as the leader in LGBT issues, when in fact it may be time - and I know others have talked about it - for the equivalent of a Stonewall here in New Zealand as well as an AIDS Foundation.

For years, despite several stillborn plans for such an independent glbt health and well-being organisation the NZAF does remain strongest, practically the only credible, voice on a broad range of HIV  and sexuality-related issues. “We are the strongest voice,” agrees Le Mesurier, “we're funded by the Ministry of Health, which enables us to be one of the strongest voices, but that funding specifically is for HIV prevention. And we're a small population and the Foundation is based in Auckland where we have 1,000,000 and a bit more people… but New Zealand has a four million population spread over two islands. It's tricky to meet the needs of the LGBTI communities when the populations are still small. And no matter how many times people want us to be an AIDS Council of New South Wales, they've got 6,000,000 people, of which most of the gay ones are sitting within four blocks of Darlinghurst.”


Despite leading the NZAF through one of its most difficult periods since the near-panic of the late 1980s Le Mesurier says she is still enjoying her job. “It'd be fair to say there's been hard patches, and it'd be fair to say there’ve been absolutely fabulous patches. But HIV is not going away so the work is in some ways more complex and more challenging than it's ever been. It's also got some wonderful rewards as well as some challenges that just don't seem to be going away."

Her words, and even her posture across the table in her plainly furnished office down the back of the NZAF's newly-purchased Auckland headquarters indicate that Rachael Le Mesurier intends bringing everything she knows to bear on the on-going fight against the spread of HIV in New Zealand.

Jay Bennie - 2nd March 2009