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Wednesday 08 April 2009

Facing the HIV "blowout" and the critics

Posted in: HIV
By Jay Bennie - 26th January 2009

NZAF Exec Director Rachael Le Mesurier
Despite overseeing the most radical change in structure and staffing in the NZ AIDS Foundation’s history, dealing with the fallout from those changes and facing what she acknowledges is a "blowout" in HIV levels amongst gay and bi NZ men, the Foundation's boss says she is still enjoying the job.

Rachael Le Mesurier knows that she, and the organisation she heads, are the target of ongoing criticism. In recent times, perhaps since her arrival as Executive Director, any love affair the gay community may have had with the NZAF seems to have hit the rocks.

Le Mesurier is not surprised that she and her organisation are not universally loved. "We're asking men to practice safe sex, and some of those men don't want to. If we were 'universally loved', and they're still not practicing safe sex, what does that mean? If we're 'universally loved', and yet ineffectual, what does that mean?" She points to such apparently untouchable non-governmental organisations as Barnardos and Plunket: "People have a go at them all the time."

However much it may be criticised in some quarters, the NZAF isn’t universally disliked either. "We've got more members than we've ever had since the early 1990s, and we've got more volunteers than we've had for the last 5-10 years… somebody thinks we're doing ok."


At heart the criticisms of the Foundation generally centre around a belief that in recent years it has lost its way and isn't doing as good a job as it used to. Indeed, it seems reasonable to ask whether, with annual  HIV diagnosis figures for gay and bi men way up in recent years, the Foundation is doing ok at its primary job of stopping men who have sex with men contracting HIV.

"I think we're doing better than ok," says Le Mesurier. "The HIV figures are bad globally… there aren't any countries where it's going down radically." She points out that there is a natural but significant time lag between the moment of HIV infection and reports of diagnoses. "The work we do now, on the men who may or may not have unsafe sex tomorrow, is actually only going to be known in the next couple of years, unfortunately. They may not test straight away, they may not get infected until later on this year, they may not be tested until next year, and so we may not have those figures until 2010-11."

One measure of what's happening are the quarterly and annual reports from Otago Medical School's AIDS Epidemiology Group HIV diagnoses report which has made grim reading in recent years and, despite dropping a little for the past two reported years, is signaled to have risen for 2008. It’s not a sophisticated measurement, but it's about all we have to give some indication of what’s happening. "Well, we need more. We've been working on that behind the scenes. We need to know how many negative tests have been had. Ironically, we haven’t been able to count that in New Zealand, because the data wasn't being collected nationally. So some of those things we're trying to get more information on."

If the next set of figures go up… "which they could do…" ...what does that tell us?

"It means that we're a small population," says Le Mesurier, "and blips are annoying but a reality." But it’s been a 'blip' for a few years now, hasn't it? "Since 2003? That's global. Every country has had that increase. And every country can go back to the two major things - the anti-retrovirals and the internet. And they all came in 1997-98-99. And human nature has been the same regardless of where you are and what any AIDS organisation was saying or not saying, that increase has happened."

"So I shouldn't call it a blip, actually. No, it's a significant increase. We're now trying to bring it down. We're probably not going to get anywhere near the 21-21-21 we previously had in 1996-97-98, because there are so many more men living with HIV now. So many men who are well and healthy."


Nobody talks about it much publicly but while antiviral treatments now mean staying well and active is possible for those infected with HIV, it also means there is now an increasing pool of gay and bi men with HIV who are generally well and continuing to be sexually active. More infections, more sexually active people with HIV. Some men are aware of their HIV status, some not and some still having unsafe sex.
And the disease has become all but invisible.

Isn't this one of the gay communities' worst nightmares come true? "It's our worst nightmare at one level, because part of the reason why there are more numbers is because people are not dying."

Le Mesurier also fears a possible repeat of the early nineties, when hundreds of gay men were of HIV-related illnesses because there were no medications to hold the virus at bay. A repeat of that scenario haunts her and, she says, drives the Foundation "with huge urgency." "We don't know how long the anti-retroviral medications are going to be effective, and how long they will keep rolling off the conveyor belt. No one knows. We have clinicians saying 'you're going to be fine for the next 30 years’ but we don't know what those medications are doing to people's internal organs, because we've only had them for 10 years. We don’t know what it does long-term. They're incredibly toxic. It’s a longer-term prognosis which still means a shortened life expectancy."

Are we facing a slow-motion blowout in HIV infections? "I think we're already in the blowout. Our research shows there is a core of gay men who always use condoms and they've not become positive in the last five years. It's the guys who occasionally don't use condoms, or more regularly don't use condoms, or have never used condoms, who are becoming positive. How much is there a potential for a blowout in that proportion? We don't know enough, because we don't know how many gay men there are in the population. Some of these frustrations are way outside our control, but we're still trying."


In the last year, has NZAF been looking for a strategy or a direction?

"We know what the direction is. It's about breaking down the HIV levels and maximizing the health and well-being of people living with HIV." And the strategy to achieve that? "I think one of the things we've learnt over the last couple of years is that there isn't one. There's actually a myriad of strategies and that's what's hard. And that's not just us. There's Sydney, Victoria, San Francisco, London, Toronto... all of us are struggling worldwide with the incredibly complex profile of HIV now. And gay men's reaction to HIV is so complex and multi-layered.

So we’re no worse off than other comparable countries or gay centres. And yet there was a time when the NZAF was considered to be a world leader in HIV prevention. “I think we still are," says Le Mesurier. "It's interesting... you go to Sydney and they tell us that they're a world leader. You go to London and they'll tell us that they're a world leader. Sometimes when we've looked at ourselves as world leaders we have to perhaps be a bit pragmatic and recognize that other people see themselves as world leaders as well. We've been incredibly fortunate to have some of the leadership and the thinking that someone like [long-serving NZAF Research Director] Tony Hughes brings to the organisation.

Historically New Zealand was two years behind other centres in infection patterns and that ‘window’ frequently gave us advance warning of major shifts in the HIV epidemic. But Le Mesurier says international access to HIV treatments, around 1997, changed that. “We all started with the anti-retrovirals at the same time. So we lost some of that window where we had been able to see things happening and we'd be able to see some things that didn't seem to work so well, and we could try something different. Now we're actually the same world-wide. We began to have an increase here a little bit behind Sydney and San Francisco, but it was actually around about the same in places like Sweden and others. So I think we've lost some advantage.”


The much-publicised and oft-criticised changes in the NZAF staffing and structure are a significant part of the Foundation’s effort to address the changed environment it faces. “We couldn't carry on facing the epidemic with the same skill set, with the same structure, with the same mindset. The restructure that took place in 2007 was quite difficult for some people. But the key output of that was actually taking little bits of communication expertise - for example, our media guy - taking that role, taking the campaign development, the work around posters, and the work around the safe sex campaigns, the very basic work we were doing around website design and IT… bringing those individuals from different parts of the organisation together so they could sit around a table together and spark off each other.

Le Mesurier says prior to the changes the NZAF was not very 'joined up'. "We had HIV prevention on one side, and we had Positive Health... one's focusing on those who are positive, one's focusing on those who are negative, and it was very hard to get the people from the two programmes to see that it's all part of the same community we're working with. So we physically brought them together."

Gay Men's Health staffer Douglas Jenkin was fitted into "a specifically campaigns role, to get the design and development of some of those key, in effect social marketing, strategies that come out of his head, and out of the focus groups he works with, into one space that then talks to [Programme Leader, ICT Health and Youth Development] Nathan Brown, who then brings with him: ‘Well you can put that in the virtual world or do that with technology.’ And then we can have someone like [National Communications Coodinator] Dawn O’Connor say: 'Yeah but hey, how are you going to make sure that you've got your key message in there, and how are we going to evaluate that?’ That has already begun to have major impact of change for us, lead by Simon Harger-Forde, who has an excellent understanding of social marketing. They've only been in place since August last year. Since then we've had the DVD Annual Report, which I'm still getting feedback from people saying ‘gosh that was really good… an unusual, different, a fresh way of seeing what the organisation is doing,' as well as trying to build the Big Gay Out, a whole range of stuff… we had the Annual Report at the same time as well as doing the World AIDS Day growth stuff."

Le Mesurier sees the World AIDS Day campaign late last year as a successful result of the new structure and process. “Our previous World AIDS Days, particularly in Auckland, have not been great. We've only done a poster in the past. This year we've linked World AIDS Day to the Safe Sex Poster Boys. We've brought in a story," about a young gay man whose gay father died due to AIDS, "that the media are more likely to pick up. We had a hundred volunteers. Part of the overall change, ready to go out and do the buckets. We were able to link in with Accor Hotels and Body Shop. All those different layers of things haven't happened in that way before. So that for me was most definitely a key advantage of that comms hub. And if you walked down Queen St on the 29th of November, there were five or six collectors on practically every single corner this year. In other years there's only been me and three or four others. So that's a very clear example of what that the comms hub did.”

A smaller structural change has been to bring the Foundation’s Pacific and Takataapui teams together with other staff targeting men who have sex with men, “to recognize that they are all working with the community that sleeps, falls in love with, and falls out of love with each other.

Other than the changes in communications and gay men's health, Le Mesurier is adamant that the other NZAF structures are "relatively the same." She says the existing and two new Positive Heath Centres are "still operating the way they have, except they’re far busier than they had been, particularly with gay men coming in for testing and counseling. [Burnett Centre manager] Wayne Otter says it's up by 25%... so somebody's wanting to use us."

Clearly keen to showcase the work of the communications hub, Le Mesurier points out that it is, for instance, evaluating what the Foundation is about and how this subsequently affects "what signage we have on the front doors, or whether or not we have a strapline on our stationery with what our key messages are, right down to how often someone like Ben [Barrat-Boyes, the NZAF's Auckland Health Promoter] visits the venues, and how we make sure the venues have enough condoms. All of that is about how we communicate, and how we're open to having communication... so that was where a lot of the upheaval came from and the change. That needed a manager - a 'director' now."


NZAF's Director of HIV Prevention & Communications Simon Harger-Forde
Le Mesurier is referring to the unheralded job title change of Harger-Forde, whose morphing from 'HIV Prevention Manager' to 'Director HIV Prevention and Communications’ caused consternation in NZAF observer circles. “I know people have had their tails in a spin about changing the title.” says Le Mesurier. “It meant that we needed leadership for the organisation. That it was about more than just health promotion. It needed to really recognize that we've got to be clever, we've got to be canny, we've got to be thinking a little along more commercial levels of marketing. We've got to be understanding what motivates people. We've worked for over 20 years on building up supportive environments, we've got homosexual law reform, we've got the human right amendment, we've got civil unions, we've got prostitution law reform. And we have men choosing not to use condoms. And that has really shaken us up. That restructuring was about recognising and being clever around communicating a message because we can't get into people's bedrooms. But getting into some form of communication of a message that would mean there would be a behaviour change.”

“And,” she emphasises, “quite frankly, health promotion in the old model was not enough... In 2008 we recognized how key communication skills are. How we use the internet, internally and externally. How we look at things like Bebo and Facebook, and how they're being used. How is Bluetooth being used, what are we doing with Second Lives and those sorts of worlds. Communication is absolutely key, as well as keeping the stuff we did well in 1987, which is the face-to-face chatting with the guys in bars. It's incredibly complex and there's not one strategy. For the last year I think we've been building up our capacity internally to get ready to start reviewing those strategic goals. And to identify more formally all the different strategies that we've got going - can we begin to understand and look more at what's happening globally and what's been more effective.”

Le Mesurier radiates a passion for ‘structure,’ and ‘process’ and as she talks there is more than a hint of flow charts and decision paths and all the other tools of a reforming executive director. Yet building a more formalised structure almost inevitably creates new layers of staff, worrying existing staff and perhaps isolating those at the top.

"Arguably it could, but whatever you're going to do, whether it's a hierarchy or a collective, things are never going to be absolutely perfect. They're groups of human beings. You can have a great hierarchy of appalling human beings and an appalling hierarchy of great human beings. We've chosen to have structures and hierarchy. Some people think that [NZAF staff] are not 'getting out' to people, whereas I know that they're actually seeing more of us than they've actually seen for many years. They may be seeing one of our health promoters far more regularly than they've ever seen them. A huge number of people ring and come and speak to me. Not everybody realizes they can. Often people want to tell me what we should be doing, where we should be putting condoms, which toilets we should be putting them in. Sometimes people come and tell me that 'you shouldn't be working with that business over there, you should be working with this business over here'. So some of the feedback that I get I have to take with a pinch of salt."

A criticism frequently voiced to regarding these changes is that there seems to be a plethora of executive titles or positions appearing, that there are now 'too many chiefs and not enough indians’ at the NZAF. "We are asking people who used to be part of a team, who then became a team leader, to do recruitment, to manage budgets, to do operational planning. Again, for transparency's sake, and to focus on our goals." says Le Mesurier. "So therefore we have now got team leaders that have become team managers. We've had regional coordinators for the centres, and they were moved first to regional managers about two or three years ago. So we had a lot of managers. Now we've got an Executive Director and a Research Director - both titles I inherited… one me, which I applied for, and the other one was Tony. And we had a National Manager of Positive Health, National Manger of HIV Prevention, Regional Manager of centres, and this and that, and I though 'this is just getting clumsy'. I'll just recreate the clarity that was there before there were any other managers. So now we've got managers who are frontline, and now we have a national exec team, which are directors.


Some of the criticisms leveled at the Foundation haven't surprised Le Mesurier, but one raises an eyebrow. In essence the NZAF is rumoured to be setting up a structure which will no longer be primarily focused on men who have sex with men, a structure that can more easily incorporate other at risk groups within the Foundation’s activities.

"Gosh, that's really interesting. No. I think its fascinating, it always surprises you when you think you're doing one thing and some people manage to see something else in it."

Not now maybe, but a suggestion is doing the rounds that when the Board flirted with the idea of broadening its target groups a few years back and the membership responded negatively, those promoting the idea - implicitly including Le Mesurier - simply switched from the short game to the long game. And for weeks before the last Foundation Annual General Meeting heard repeated allegation that a membership drive had attracted large numbers of non-gay people who planned to turn up to the AGM and force such a change. As it turned out the members attending the AGM were almost all gay, and generally the usual attendees of such meetings.

"You can't do much with the cynics, unfortunately. We've got more gay men working in a larger HIV programme than we've ever had. We've got more Takataapui, up from 2.5 to 4. We've got more gay men working in Gay Men's Health. I find it fascinating. Our African programme has got no bigger, they're doing great work, and until someone points out to me that we've got a huge growth in another at risk community, which I don't believe we do, then we're not about to grow any [more] programmes."

The bottom line on that score, according to Le Mesurier, is what the NZAF is funded by the Ministry of Health to do. “We've got a three-year fixed contract with the Ministry which has nothing in it about growth into what? Where? What are other aspects of HIV? Which are the other communities at risk of HIV? I'm sorry they feel that way. It's not true.


How does Le Mesurier respond to claims that she and the Foundation are fundamentally on the wrong track and not listening to the community? "The door is open and people do come in say that. Sometimes they may need to off-load about their colleagues - they may not be happy about each other. So people may be surprised that it's not necessarily me that they're unhappy with. With 50 staff working together you're occasionally going to get people that don't get on with each other. My job sometimes is to help them move through that."

"They'll come and say perhaps that they're not thrilled about that poster or the way in which that group came together to perform that, or they didn't feel that that's what should have been happening over there, why did those staff not go over here at that time. Frequently that is brought to my attention, people come and tell me, ring me or email me."

Le Mesurier believes she may in fact be too accessible. "Generally, the feedback I have received both in my performance reviews and from colleagues, is that if anything I'm slightly too open-door. I can spend a little bit too much time listening and talking to other people, internally and externally. And occasionally they'd like me to close the door and focus on stuff that might be more paperwork based or revising the strategic goals."

So with more volunteers and members signed on, a revamped gay men’s health team and a communications hub, and its new approach to reaching out to men who have sex with men, the Foundation is not the debased organisation it’s painted by some to be? “Definitely not. Having worked only in community-based charity-based NGO-based organisations all my work life I know of the ones that I would say have major problems. This is not one of them. And I can go from baseline all the way up to the board. We're not perfect, but one of the things I think is most rewarding is when we have new staff who've been here six months to a year and they say to other colleagues: 'you don't know how lucky you are to be working here.'"

In the next part of's extended interview with NZAF Executive Director Rachael Le Mesurier,
to be published later this week, we will discuss staff relations and more of the criticisms doing the rounds about the way the Foundation operates.

Jay Bennie - 26th January 2009