Presentation to HIV Clinical Care Meeting, Wednesday 22^nd February 2012

Introduction

I appreciate the opportunity to talk about what we are doing at the AIDS Action Council and to describe some of the ways in which we are adapting to meet the realities of today’s challenges and to also highlight a couple of areas where we think public and sector policy is falling out of step with changing epidemiology.

Our mission remains in seeking to reduce the personal and social impacts, and transmission of HIV. This requires us to paint on a fairly broad canvas, and it is impossible to adequately cover every aspect although I hope there will be sufficient time for questions at the end of my presentation for areas that I don’t cover specifically. Our annual report is also available that fully describes our activities.

I am sure that you will understand why I will devote most of my attention to men who have anal sex with other men including those that identify as gay. It is true that we have increasing numbers of clients at Westlund House that do not fall into that group, but the vast bulk of our work continues to sit around the most efficient sexual transmission route of the virus.

The main themes of my talk are around engagement, communication, empowerment and sexual health testing. However, I have arranged my presentation in three broad sections, comprising;

• Organising for new challenges
• The new challenges, and
• A spotlight on prevention

I’ll finish with a few concluding comments and take some questions.

Organising for new Challenges

About 10 or 12 years ago, it seems to me, we began to fall asleep at the wheel. Perhaps it was because we had been experiencing declining diagnoses for a few years. Perhaps it was because the benefits of new highly active treatments were becoming more apparent. Or, maybe it was because the HIV sector in Australia was becoming a mature industry and like many mature industries developing myopic and unimaginative thinking.

Possibly all three factors are in play but I think that it is the third that we can do most to address now. To have an HIV response that remains the same for a decade, whilst the epidemic is evolving and changing year on year is unfortunate and we see the results in a lack of innovation and adventure in the challenges that we now face.

I say this as a critique rather than a criticism, because though we might well have done better, we have kept the diagnosis rate to around a 1,000 a year.

For us at the AIDS Action Council, we have recognised that we didn’t spend the last decade evolving as an organisation and until recently we have used a model that was effective in the 90’s, but less equipped for a new century. We have therefore been progressively changing our approach, and this has means changing our structure.

Three years ago, we had two operational units. We had a Health Promotion Unit, and we had a Client Services and Support Unit.

We began to see that this unit division did not reflect how we deliver services operationally, and we thought about what it is that we actually do. We adopted some key principles.

Clients. We understood that clients are anybody that interacts with our organisation no matter how anonymously, and this includes anybody who accesses our website or reads an advertisement. Clients include anybody that seeks employment with us, and any client that directly connects with us by seeking service or support.

Advocacy. We started out 27 years ago with strong credentials in advocacy, and where necessary activism, in order to serve the communities that created us. We drifted into looking at advocacy as a personal service, delivered in response to a specific issue experienced by a specific client. Reinvigorating advocacy plays out in our recognition and activity in broader community concerns, including our keen interest in the new testing policy, the review of the prostitution act, and homophobia and sexual health education in schools. We are also active in blood borne virus issues in the AMC.

Engagement. We have to think of engagement as being multi-directional. We can’t sit at our desks in Westlund House waiting for someone to emerge with an issue. If we are to be genuine servants of our community, then we have to provide much greater opportunities for those communities to engage in helping to set our direction. Consequently, our strategic plan was developed in consultation with all stakeholders and our performance against it goes out annually for public appraisal. Key requirements for genuine engagement are accountability and transparency, and we are committed to both.

Structurally, a more significant thing that dawned on us was this. We really do one of two things. We either work at a broad community level, as we do, for example in large-scale condom reinforcement programs, or we talk at an individual or defined group level as we do through peer workshops, counselling sessions or in direct client support.

Our organisation is now structured in the following way.

{See Appendix}

We are a small organisation that has to do things that require particular skillsets. We have developed this organisation model in order to move authority down the line, and we do this by empowering and supporting decision-making at all levels.

We have established program areas that take away silos that sometimes develop. Program areas, although they each have independent work plans, collaborate extensively. This promotes the principles of autonomy, innovation and efficiency. Or, in other words, we now do more, we do it better and we can do it faster.

We are now more prepared to respond to new challenges we identify and to re-establish our voice as a community authority on the personal and social impacts and transmission of HIV.

The New Challenges

I am not going to talk to this audience about what the emerging issues are in our epidemic locally and nationally. I want instead to discuss why addressing the challenges in prevention, care and support are more difficult today and offer some examples of the ways in which we are confronting them.

The first of our challenges is communication. How do we reach those vulnerable to HIV risk if they do not identify as gay, or are not community attached or who do not know of their vulnerability. When there was a crisis and people were dying, engaging with those vulnerable to HIV was relatively easy. It wasn’t so much a case of finding them; they were quite likely to find us.

As an AIDS Council we can’t now rely on a relevance that those days delivered to us, and indeed it is probable that we may seem quite irrelevant to a majority in the communities we work with. Even though this may be the case, our mission requires us to respond to health and wellbeing needs of all priority populations regardless of whether they connect to us or not.

At the same time, communication methods and modalities have changed significantly. More of us connect with more people more frequently, and we do so through expanding social media opportunities.

Reaching key populations efficiently is much more difficult and becoming more so.

Similarly, many community members are finding less reason to connect to organisations or institutions that represent them. Perhaps many don’t feel a need to be represented at all. On one hand, we might think this is a good thing if it means, for example, more people living with HIV are managing things quite well without community support in addition to their medical services. On the other hand, it may not be so good if it means some people are living in mild misery, and as I wrote recently there is a risk for all of us for mild misery to become the new happy.

This lack of connections has implications in terms of ensuring people who engage in behaviour that includes risk, have enough information for their decisions to be sufficiently well informed.

For years, we relied on the use of so-called gay media to communicate this information. Gay media means that information is put where gay people are such as in magazines, at gay venues and through peer education initiatives. In a sense, this is a kind of trap, because it relies on gay people behaving like gay people and they don’t so much any more. But in addition to that, these efforts target gay men, but as I discussed, not all men that have anal sex with other men are gay. What do we know about the relative risk profiles of gay men compared to non-gay men that have sex with other men?

For organisations like ours, this is a serious issue. If we cannot disseminate information, no matter how well executed, with real confidence that enough of our target will be exposed to it, how do we shape a new paradigm? Is there a communication model that is sensitive to a population that is more diverse and disparate?

Well, we have to think so. We are working towards a more integrated network of communication that incorporates important principles of peer education. It means we are trying to be where people are rather than merely resident in a building like Westlund House. We have to be increasingly a more virtual organisation rather than one of bricks and mortar. We are redefining what we mean by “media” and we now include all means by which information is passed from one place to another, recognising that word of mouth is the most common and frequently the most effective.

Well, a good theory, but how is it looking in practice?

We have used Facebook for some years of course. However, like most organisations, we began because we thought we should, but we didn’t have a clear strategy or an expectation of what it could do. We also made a common error in looking at Facebook as being a medium. That is, we saw it as a place predominantly for putting information – and therefore as an end in itself. But, of course Facebook and equivalents are platforms and you can’t get from A to B by standing on a platform. So, now we look at Facebook as being an integral part of a network of communication; its temporary and temporal nature gives it a role of moving people someplace else. Our strategy is to use it to drive people to other places where information is more permanent such as our websites. When we want to share information, we have to include as broad a range of these platforms as possible. Traditional media, social media platforms, blogging sites, peer workshops, newsletters, other people’s websites, chat sites, medical practices, our trained volunteers, teachers and educators and so on. The messaging needs to be consistent because people need information from a variety of sources, and then it will resonate and stick.

Our purpose is to generate peer conversation. For example, if we want young people to learn that HIV is a real but avoidable possibility, we have to have young people discussing it amongst themselves. Our strategy of generating and sustaining conversations amongst semi-homogenous groups like young people, positive people, sex workers, CALD communities and so on is a direct reflection of our commitment to peer education that I spoke of before, and we have always had success with peer education.

We have been building this strategy from the time we first implemented our latest strategic plan, and I can’t provide empirical evidence of its success. What I can say, however, is that many of our key indicators have moved in the right direction. Our incidences of direct client service more than doubled in 2011, our peer education programs expanded and the participation rate was higher. Attendance at our public events considerably increased during 2011, and interestingly, events like Candlelight Memorial saw a 50% increase in attendance over the previous year and 30% were under the age of 30. Good as this may be, we need to remember the lag between the implementation of a communications strategy and sustained behavioural change.

Finding new communication strategies through new platforms is good, but it is only half the equation. The other side of this coin is what we say to initiate a conversation and how we say it.

We’ve suspected for some time, that we have collectively lost our way in the language we use when talking with our constituent communities. Indeed, I said “talk with”, but I fear that we have been increasingly “talking at” these communities. In terms of transactional analysis, our earliest response to HIV was clearly ADULT to ADULT. This was inevitably so because the earliest response was almost exclusively based on peer education and support. We gay men talked amongst ourselves about how we could collectivise and find strategies to meet the looming and soon to be real crisis. Similarly with sex workers, haemophiliacs and people who use drugs. And thus, a broad-based community response was born.

But over time, this kind of grass roots response became organised and bureaucratised into an industry and some of the direct connection with our own communities became loosened. Instead of ADULT to ADULT, we became increasingly PARENT to ADULT or even PARENT to CHILD. The difference is that instead of talking in the way that peers do, we started to talk in the way of teachers or parents. Rather than be supportive of the rights of gay men, sex workers or others to make their own informed decisions, we began to be instructive in our presentation and language. We have drifted towards a sort of blandness, as if we just need to keep repeating the same old messages and just spruce them up with clever graphics and imagery. For some years, it seems to me, we have stopped speaking in the language of our peers and adopted a more authoritarian tone.

The explicit language and confronting approach has become more and more rarely seen. In this execution of our I Heart campaign, you might be interested to know that this is the first time we have used the F word in a decade and a half.

If our role is to initiate conversation at peer levels, we need to speak as peers. Let me briefly outline what we have done to date, and how we propose to move forward.

Focus Groups: Over the last three years we have expanded the use of focus group testing for campaigns both during their development as well as in post campaign evaluation. Focus groups are an important tool for a number of reasons. They help ensure that our language works specifically for the group or groups we are targeting. It is very difficult for older people to confect the language of youth.

Another advantage of focus groups is that they go beyond only their specific purpose and illuminate other issues that are of concern to that group. Listening back through the transcripts, it is insightful to see something of how the world looks through others eyes … it helps us to avoid unhelpful assumptions. One more interesting aspects of focus groups is that participants very often talk about what they think other people think, and this allows a degree of frankness and directness that is hard to achieve in other survey methodology.

There are some limitations. This is qualitative as an approach, and there is a risk that the group selected is not actually truly representative of the target. We can ameliorate this to some extent by holding multiple groups and looking for commonality. Another problem is that we can realistically only draw participation from people connected to a community or to our organisation. We believe that the more vulnerable groups are not connected or live with some anonymity and these are not represented in the groups we run. However, groups are not isolated completely and they will intersect. So, for example, if we get better and better at communicating to community attached gay identifying men who have anal sex, there is a reasonably strong prospect that the information and messages will filter through to related groups beyond the immediate target.

Engagement: In addition to focus groups, we have also directly involved community in the execution of our campaigns. I showed an example from our latest iteration of what we call “I Heart” earlier. This is now in its third year and every one of the 13 models we have used is a well-known member of the gay community. Although each year we choose a basic theme, we allow each model to determine for themselves how they want to pose and what quote they want included in their poster. This adds genuine realism and credibility

The idea of engagement extends through other projects. For example, QNet is a program we have operated for more than 9 years now. In essence, QNet is aimed at same sex attracted youth that may be as young as 13 with an upper age limit of 25.

Despite its format as a bulletin board seeming possibly rather old fashioned in the age of Facebook, and despite little effort from us, QNet’s following has remained consistently strong over the years. So, two years ago we recognised that QNet and its audience was an underutilised asset, particularly in light of our push for a more realistic and serious effort with sexual health education for young people.

We re-invested in the project, redeveloped its Internet presence and developed QNet beyond being a platform and into a brand; a brand that is owned by its users. To support this, we also introduced real world activities such as movie nights, picnics and so on. Recently we established a QNet reference group that will help guide its own future development. For this peer project, risk management is a very serious issue and so our development is kept within strict monitoring and moderation guidelines.

Being Real: We use the word engagement a lot, but another word we use a lot but don’t necessarily execute as much, is the word empowerment. As a community organisation built on a foundation of community development, the importance of empowering people to make their own informed decisions is a fundamental belief of the AIDS Action Council.

This creates a dilemma. We know that most men use condoms most of the time when having anal sex with other men. Conversely, we also know that most men sometimes have anal sex with other men without using condoms and that mostly the personal consequences are minor or zero.

We need to talk honestly with men about risk; about relative risk. Gay men aren’t dumb and they are not all going to buy the “If it’s not on, it’s not on” message. It is far too simplistic in the real world in which they live. Given a choice, most men would prefer not to use condoms but will use them because they perceive the risk as being greater than any additional pleasure. It is a basic risk/reward equation, but we all know that there are other strategic options for reducing risk, including sero-sorting, strategic positioning, withdrawal and so. These are things we are sometimes a little squeamish to talk about. But surely, don’t we owe it to gay men and others to give them all the information? We think so, but we acknowledge it is quite difficult to get it right.

So far we have managed in controlled settings such as peer workshops and one-on-one counselling, but how would a campaign look? How can we let men know that if you are circumcised, exclusively insertive and have sex only with HIV negative partners, that your HIV risk is very low (if not zero)? How can we do this without the unintended consequence of empowering men to discard or reduce their condom use?

Responding to well-entrenched risk reduction strategies already employed within the gay community is an issue we have been grappling with for the last ten years. In part, the problem is partly one of brand confusion. As the AIDS Action Council, we have to meet the requirements of all stakeholders. In particular, we are a government funded organisation and we are paid to deliver specific outputs. Our brand is expected to promote condom use and other messages that supported alternatives would naturally cause some consternation in a variety of quarters including right here.

As a community organisation, we are concerned with the health and wellbeing of all our community members. And, this means telling it how it is. It means rather than the instructive approach of telling gay men what they should do, we need to find ways to fully support gay men in what they are doing including helping them fully appreciate risk and consequence related to their own behavioural choices.

There may be a solution to this dilemma in the way that QNet has evolved, by developing a new brand based on a new model of health promotion. One that is more firmly based on peer education with messaging guided by men who have anal sex with men, regardless of whether they are gay identifying or community attached.

This project is in its early stages of design and will proceed only in very measured steps. At this stage, we’re calling it: “It’s My Life”, and it will sit outside of the identity of the AIDS Action Council, but will be clearly a Canberra and surrounding region resource. It will be a virtual community, moderated as necessary, but capable of exploring ideas and practice that reflects real world experience with the credibility that comes from information generated and discussed within a peer context.

Interestingly, we think a similar model may be the means by which we can increase the number of HIV positive people engaged around the services and support networks available to them.

Spotlight on Prevention

Let me step you through our thinking around issues of prevention and where we are in some ways diverging from the ‘establishment’ view.

It is obvious that if we are to reduce transmissions by 80% by 2015 as Bill Whittaker calls on us to do, there are a number of factors that have to be in alignment. We need to ensure that everybody infected with HIV is on effective or appropriate treatment. We need everybody who has the virus to know about it. We will need everybody to use effective barrier protection for every single sexual transaction, and every occasion of injecting drug use must employ sterile equipment.

Of course this is simplistic and none of these conditions are likely to be met, so let’s look at a couple of issues where we believe our thinking can change and I am going to focus specifically on gay men or those men that do not identify as gay, but nonetheless engage in anal sex with other men. I often feel it necessary to say that our interest in gay men is not because they are gay, but rather because they are a group more likely than others to engage in anal sex.

The epidemiology of our epidemic remains very heavily weighted towards men that have anal sex. Obviously this is where the bulk of community infection resides and so these men are relatively more vulnerable at a community level. It is also true that despite the community vulnerability, any individual selected at random from within that community actually has an extremely low personal risk on average. However, if you select individuals from that group based on key criteria, they will carry a disproportionately large share of the overall community risk burden.

For example, a person that is exclusively a receptive partner, has another STI, has a high number of sexual partners and does not use condoms is high likely to contract HIV over time.

We know some things about men who have anal sex with other men, but not necessarily enough for certainty about strategies for reducing transmission. That statement is of course supported by our continuing new diagnosis rate in excess of 1,000 per year.

Given that the Gay Periodic Community Survey typically reports on men who have anal sex with other men who substantially identify as gay, the reported rates of testing and condom use are likely to be positively skewed, or in other words, are likely to overestimate actual rates if those without community connections are included.

A number of studies conducted here and overseas, including one recently released by Peter Saxton of Otago University have attempted to estimate the number of gay men who have unknown sero-status but who are nonetheless HIV positive. Naturally, this rate will depend on underlying prevalence in the community studied. It is thought that somewhere between at least one in five and one in six HIV positive gay men in Australia are undiagnosed and this contributes 31% of new infections. The periodic surveys show that 40% of respondents had not been tested in the previous 12 months and that around a quarter have never had an HIV test. Again, I remind you that these numbers reflect the gay subset of men who have anal sex with other men, and are the subset that has been targeted for 25 years or more with safe sex education and resources.

Last year the AIDS Action Council conducted a number of focus groups to try and gain some insight into the relationships gay-identifying men have with sexual health testing. I’ll come back to this in a little more detail if I have time, but I will say here that there seems to be a number of different motivators that influence the personal testing decision that gay men make.

As in any marketing exercise, be it social or commercial, it is essential to recognise distinct attributes of segment targets and pitch the message to individual motivating factors accordingly. It is not good enough to come up with one homogenous approach for what are in reality heterogeneous groups.

Part of our purpose in conducting these focus groups was to identify where self-administered testing (including in home settings) might sit. Our motivation was driven by the easy accessibility in Australia of so-called home testing kits and an increasing number of questions about them that we are receiving.

David Mills and I wrote a paper that was published in HIV Australia late last year. I have copies available here for those who are interested. In this paper, we identified three barriers to home based self-administered testing. These are:

• Doctor knows best;
• Epidemiological sanctity (preserving data collection in its current form; and
• Homophobia

Let me just make it clear that the AIDS Action Council we do not have a policy of promoting home-based, self-administered testing as the most desirable or effective testing option. We do have a policy that supports the rights of gay men to determine the manner in which they undertake their sexual health testing, and that those decisions should be fully supported.

I get a number of people calling me to ask about home tests, and what am I supposed to say? That the new national testing policy doesn’t support it? How do I explain that gay men were not genuinely consulted in the development of a policy that determines how they should accede to the request that the community asks of them? Is there a penalty for being gay?

Our focus groups seemed to confirm what we already suspected, which is that only a very small minority of gay men will choose home testing at this stage. Indeed, we believe a clinical setting will continue to be preferred.

However, we know that a number of gay men are already purchasing and using home test kits which they can legally and easily purchase over the Internet for as little as $17. In the United States, home test kits will be widely available as over the counter products in pharmacies and supermarkets about now. 200 kits were recently put on the shelf of a pharmacy in Sydney, and were sold out before the authorities could react.

So, I think we can assume that there is inevitability in the future growth of these kits in Australia if for no other reason than sheer convenience and cost. So we have a choice. Should we support those who have already opted for the kits, or should we run some social marketing to warn people about the risks of using them, and thereby promote news about their availability?

The problem is that there really aren’t risks in using home testing kits, with some provisos. Obviously the kit must meet appropriate standards for efficacy. Secondly, people using them should understand that this is screening rather than a definitive test, and thirdly, a person using such a product should have appropriate support in place prior to use in case the result is positive.

We have therefore come to a view that we must not put our heads in the sand on this one. We must avoid telling gay men what to do, and help them understand how to use this new technology in an effective way, and provide the right access to support for those that need it.

When we ran the focus groups, we built a dummy website for people to use and surveyed their reactions and feedback. Of course, participants knew that this was not a real service.

We called it “iTest” and we designed it as a model that could be easily implemented. I am not planning to go through the whole thing, because obviously given the experience with rapid testing, we would be looking at half a decade before we were in a position to actually provide these screening kits with administrative approval.

What we think, is that we have to start providing appropriate information to members of the community that hear about the kits so their decision is better informed. Whilst we cannot recommend a particular kit to someone who asks, we should at least be able to tell them what to look for in determining the quality of the kit they select. We need to be able to explain what a positive indication actually means and how they can seek a confirmatory test. We need to be able to assist them in having the right kind of support in place beforehand. And we need to be available to be that support if required.

To us, the issue we need to focus our attention on is who these people are that will be most motivated to access this kind of testing or screening. Logically, there is a high chance that these are folk that for a number of reasons are reluctant or unable to access another mode of testing. It is logical to suppose that these people may also have some reason to think they may have had potential exposure to the virus. If either or both were true, clearly these are a priority group. If we are indeed serious about prevention and accept the essential role that testing plays in reducing transmission, we must surely use all available means to provide access to testing and to offer it in a way that meets the needs of consumers.

I have to say that our position is broadly criticised. Indeed I have heard it said in this room that if given access to self-administered testing, gay men would use it inappropriately. In other places I have been told that gay men would be unable to cope with a bad result and the prospect for self-harm would be greatly increased. I don’t deny that this might be so … but all gay men?

These assumptions, and that’s what they are, about what gay men might do are homophobic. We cannot justify denying the rights of gay men to the best technology based merely on speculation about what a few may do. This is simply a lowest common denominator approach and that is surely unacceptable.

Some gay men are choosing home testing and we need to support that decision, not vilify it.

Just as discussing risk reduction strategies is complex and potentially dangerous, so too is talk about self-management of HIV testing. That can’t mean that we ignore what are real issues both for gay men and for our HIV response. We think this is another reason why we need an “It’s My Life” approach.

Conclusion

Let me conclude by asking us all to remember how risk reduction strategies were initially communicated to those first communities to confront HIV. Remembering that it was affected communities talking amongst themselves and between each other that helped develop more than just the safe techniques that reduced risk and minimised harm, but also a new culture of shared responsibility that lasted two decades and remains somewhat intact even now.

I called my talk “Falling Asleep at the Wheel” because I think that this is what we in the community response have come close to doing. We used to be our own advocates for own wellbeing, but it seems to me that somewhere along the road we lost the sight of the very shared culture that made us a truly effective partner in Australia’s response.

At the AIDS Action Council we believe that giving all of us as much authority and autonomy over our own health as possible is empowering and will lead to better outcomes in the long run. Limiting that level of personal control is not only misguided; it transgresses basic human rights.

We understand that HIV as a predominantly sexually transmitted disease is particularly sensitive, and that for some, decision-making can be difficult. It is hardly surprising that allowing people to discover their own HIV status in complete privacy is challenging for us here in Australia, where we have a history of carefully developed policy and practice that used to involve affected communities, but no longer does so.

At the AIDS Action Council we are doing little more than reinventing the past and remembering the lessons that were hard learned all those years ago. We are a community response and it is therefore completely appropriate that we do whatever we can to be guided by the communities we serve. At times, this will, as it always has, put us at odds with those in clinical services, or research or epidemiology.

Our perspective isn’t arrogant and we don’t claim that we know the answers. But we do think we have both a right and a responsibility to speak out more strongly on matters that affect communities of which we are a representative part.

Thank you very much.