HIV Australia - Features

Vol. 3 No. 1

September - November 2003

HIV on the riseThis special feature looks at the rise in HIV infections in NSW, Victoria and Queensland. Key representatives from the respective Health Departments and AIDS Councils discuss why the rises have occurred and outline how they plan to respond .

Keeping calm MICHAEL HURLEY looks at the current – and possibly ongoing - challenges facing Australia in its response to the rises in HIV infections.

The silence of lipodystrophyThe visibility of HIV is rising yet no one seems to be talking about lipodystrophy, reports ASHA PERSSON.

The Journey from AIDS dementia complex to complex needs ROBERT ATTWOOD outlines the changing needs being observed in clients attending Adahps, a NSW based service for people with HIV and complex needs, and the service’s response.

HIV on the rise

HIV is on the rise in Queensland, NSW and Victoria. The Health Departments and AIDS Councils from each state discuss why and outline how they plan to respond.

New South Wales

AIDS Council of NSW

By Adrian Lovney

HIV is on the rise and safe sex has fallen. “Complacency” is the theme most often used by those wanting a simple and media-friendly explanation. But AIDS Councils across the country will tell you things are now far from simple in the HIV prevention field.

HIV education programs were once relatively easy. ‘Use a condom every time’ was a simple and effective message – a stark choice between life and death – and in a way in which heterosexuals never have, gay men took to condoms in the millions. Our reward was some respite. The overwhelming success of these HIV prevention campaigns, together with effective combination therapies, meant that deaths from AIDS as well as new HIV infections plummeted. Our response to HIV/AIDS stands unmatched around the world.

But this is now at risk. It’s 20 years since the beginning of the epidemic and gay men have a much more sophisticated understanding of HIV. They know that sex without a condom is not safe but they also know that there are some things they can do to reduce that risk. They consider their options, calculate their risk, and take their chances. Unfortunately, some of these choices may not have been entirely accurate or based on incomplete information (ie. assumed HIV status). The potential for an increase in new infections has now happened.

The challenge now is how we can sustain behaviour change over the long term without resorting to fear-based campaigns. Health promotion campaigns seem easiest when they are based on fear, whether it’s seatbelts; drink driving; heart disease; or HIV/AIDS. The messages are familiar: “do this, or this will happen to you”. Any expert in health promotion will tell you that fear might be good at drawing attention but does little to change behaviour. Why do one in five Australians regularly smoke, even though they know it is the single greatest cause of death and disease?

The smoking analogy was one of the first to be raised at a recent forum hosted by ACON bringing together community groups to discuss our response to the HIV rise in NSW. Although many of the community representatives at the forum did not have a strong understanding of HIV prevention work they were all aware that encouraging condom use alone will not be enough to prevent HIV infections. A large proportion of the new infections are among 30 to 39 year old men, who have heard the messages about condoms for many years. We must address the range of issues that impact on their decision making, not just shout more loudly at them.

We need to engage gay men in a new conversation around risk taking, to arm them with accurate information on the risk reduction strategies they employ and take this conversation back out to the community. AIDS Councils cannot shoulder the responsibility of HIV prevention work alone. A strong, comprehensive community response to HIV/AIDS two decades ago brought us many successes and we need to reinvigorate that sense of community responsibility again.

ACON has started talking with community groups about building this sense of responsibility. We have identified a range of key interventions that we can work together on. Over the coming months we will focus our efforts on:

• Increasing rates of HIV testing
• Sexually adventurous gay men
• Complexities of gay male relationships
• Reducing sexually transmissible infections
• Reinforcement of condom use
• Information on the risks of different sexual practices
• Counselling and education for at risk gay men
• The impact of drug use on risk behaviour
• HIV positive gay men’s involvement in prevention efforts
• Updating our young gay men’s programs
• Supporting newly diagnosed gay men
• Continued promotion of PEP

HIV education programs that cover such a range of complex issues will not be simple or easy. Government and community support for finding new ways to engage gay men and their more sophisticated understanding of HIV will be essential. Community-based HIV/AIDS organisations – delivering rigorous, targeted, and honest health promotion campaigns – must be at the very centre of our continued response to rises in HIV infections. We must be steadfast in defending those things which we know to work – but ruthless in identifying areas where we can sharpen our focus in response to this threat.

Adrian Lovney is the President of ACON and Secretary of AFAO

NSW Health

By Darryl O’Donnell

In 2002, NSW recorded a 15 per cent increase in HIV notifications. The increase represents an additional 52 notifications, from 339 cases in 2001 to 391 cases in 2002. This is the first increase in HIV notifications in NSW since 1995 and the largest increase since the epidemic was effectively brought under control in the late 1980s.

NSW Health is working closely with the Ministerial Advisory Committee on AIDS Strategy and its Health Promotion Sub-Committee in its response to the increase. The response includes four areas of overlapping activity and investigation:

• analysis of HIV surveillance and research data;
• coordination of immediate health promotion interventions;
• review of NSW HIV/AIDS health promotion strategies and programs; and
• development of new strategies and directions.

Analysis of HIV surveillance and research data

In late July 2003, NSW Health staged an HIV Surveillance Forum to consider the increase in HIV notifications. The forum provided an opportunity to examine the range of available data including, in particular, data on factors that influence patterns of HIV transmission. The data presented at the forum included:

• notifications of HIV diagnoses;
• sentinel surveillance and special populations data;
• HIV reference laboratory data;
• sexually transmissible infections (STI) diagnoses;
• HIV treatment and viral load data; and
• behavioural, including testing, data.

The range of data presented suggests that the increase in HIV notifications in NSW is a result of slight shifts in a number of variables, rather than from a single larger change. These variables include increased HIV prevalence (and consequently, community viral load), sexual risk taking behaviour and concurrent STI epidemics among gay gay men in inner Sydney. Of particular note, the increase in NSW HIV notifications does not appear to be an artefact of changed HIV testing patterns.

There is little in the data presented to suggest that the increased notifications will not either continue at current levels or further increase. In closing the forum, Dr Roger Garsia, Chair of the NSW Ministerial Advisory Committee on AIDS Strategy, noted that there is more to lose by under-estimating the importance of the increase, than in over-estimating it.

Coordination of immediate health promotion interventions

The increase in NSW HIV notifications is predominantly concentrated among gay and homosexually active men residing in inner-Sydney. In NSW, the AIDS Council of NSW (ACON) represents and leads the gay community’s response to HIV/AIDS and is recognised by the NSW HIV/AIDS partnership for its leadership role in this regard. As such, NSW Health is working closely with ACON in its response to the increase. While ACON has primacy in the area of gay men’s HIV prevention activity, it is by no means the only agency to have responsibility for HIV prevention programs. Other non-government organisations and Area Health Services also carry significant responsibilities.

NSW Health has established an Action Plan identifying a number of key areas in which immediate enhanced health promotion activity is required over an initial six-month period in response to the increased HIV notifications. The Action Plan includes a significant social marketing component, and addresses areas including unprotected anal intercourse in both casual and regular relationships, STIs, drug use, and sex on premises venues. Most significantly the Action Plan is concerned with alerting gay men to the increase in HIV notifications and a re-evaluation by them of their levels of risk-taking in the context of changes in other variables that also shape HIV transmission dynamics.

The implementation of the Action Plan is being coordinated by an interagency whose members include ACON, People Living with HIV/AIDS (NSW), the Australasian Society for HIV Medicine, and the South Eastern Sydney, Central Sydney and Northern Sydney Area Health Services.

Review of NSW HIV/AIDS health promotion strategies and programs

In addition to the short-term activities of the Action Plan, NSW Health is concerned that there be a proper examination of current HIV/AIDS health promotion strategies and programs.

In July 2003, NSW Health appointed a consortium to conduct a high-level evaluation of the NSW HIV/AIDS Health Promotion Plan 2001-2003. Professor Andrew Wilson, of the School of Population Health, University of Queensland, is the Lead Consultant for the consortium. Professor Wilson is being supported by Ms Marilyn Wise, Executive Director, Australian Centre for Health Promotion, David J Fowler Consulting and Aldo Spina Consultancy.

The Evaluation includes process, impact and outcome assessments and will involve detailed stakeholder analysis, a review of research and documentation, and a comparative analysis of domestic and international responses to HIV/AIDS.

Development of new strategies and directions

The consultants are scheduled to deliver the final Evaluation Report to NSW Health in December 2003. The Evaluation will be significant in informing a new strategic framework for the triennium 2004/2005 – 2006/2007. The development of the strategic framework, which must necessarily grapple with the medium-term implications of the increase in HIV notifications, is scheduled for completion by mid-2004

Darryl O’Donnell is the Manager, Health Promotion and Community Development AIDS/Infectious Diseases Branch, NSW Health

Victoria

Victorian AIDS Council

By Mike Kennedy

HIV notifications in Victoria followed a steady downward trend from 235 in 1993 to 140 in 1999, except for a slight rise in 1996. However, in 2000 HIV notifications rose to 198, and this upward trend has continued, with 218 notifications in 2001 and 234 notifications in 2002. Gay and other homosexually active men have shown the greatest increase in HIV infections, more than doubling since 1999.

The release of the 2000 figures generated some community discussion about whether this was an increase or a blip. However, the Ministerial Advisory Committee on AIDS, Hepatitis and Related Diseases (MACAHRD), the Health Minister, the Department of Human Services (DHS), and VAC/GMHC quickly took the view that we could not afford to wait to see whether the increase was replicated in subsequent years before we took some action to address the increases.

Although there was, in retrospect, a clear political dimension in this decision, there was also social research to back up our decision to act. The Melbourne Gay Community Periodic Survey had been done in 1998 and 2000 and, at the time that the 2000 HIV notification figures became available in early 2001, the analysis of the 2001 Periodic Survey was still being completed. (There is ongoing debate within the HIV partnership in Victoria about how representative the Periodic Survey data are of all male to male sexual behaviour in Victoria, given that they are drawn from a sample of gay community attached men. However, they are the most consistent data set we have available and the trends in that data set do inform our HIV health promotion decisions.) The 2000 Periodic Survey showed that, amongst men with casual partners, the number who had any anal intercourse increased from 71 percent in 1998 to 75 percent in 2000, and the number who sometimes did not use a condom with those casual partners rose from 18.6 percent to 23.6 percent.1

MACAHRD in conjunction with DHS conducted a partnership forum and recommended to the Health Minister that a number of enhancements be put in place in the areas of surveillance, prevention education, sexual health and testing, and treatment and support. Funding for these enhancements was announced by the Health Minister at the media conference in March 2001 at VAC/GMHC that publicly announced the increases in HIV notifications.

The VAC/GMHC component of this funding delivered a range of new initiatives through 2000 to 2003 and that funding has now been fully expended. These initiatives included community forums, safe sex videos for sex on premises venues (SOPVs), an SOPV/beats print resource, workshops for positive men and for negative men in sero-discordant relationships, a sexually transmitted infections booklet, a narrowcast advertising campaign with safe sex messages developed in conjunction with Convenience Advertising, a revitalised SOPV/beats outreach program and a Sexually Transmitted Infection (STI) testing and treatment campaign (Gono in 60 Seconds).2.

In mid 2001, GlaxoSmithKline agreed to fund a twelve-month pilot of Lifeblood, a bimonthly health promotion supplement in the gay community newspaper MCV. Lifeblood was a conscious attempt to address the declining engagement of gay men with HIV and the publication located HIV prevention and sexual health promotion within the broader health, emotional, social and political concerns of gay men. The external evaluation of Lifeblood found that it was achieving its objective. Frustratingly, it took DHS more than nine months to consider an application for funding to extend the pilot before deciding to postpone the decision until after the DHS review of VAC/GMHC. As the review report is not due until late 2003, we were left with no option but to suspend publication of Lifeblood in May 2003.

The VAC review presents us with an opportunity to fine tune our HIV prevention work and negotiate a new set of programs with DHS and we hope that this will be implemented from early in 2004. Using one-off funding from DHS, we are about to embark on a twelve month HIV testing campaign in conjunction with a broad consortium of medical, social research and community organisations.

In the meantime, the complex mix of politics, program planning and delivery, and community expectations that have accompanied HIV increases elsewhere add to the challenge of coordinating a community response to the expanding epidemic.

Mike Kennedy is the Executive Director of VAC/GMH.

Victorian Department of Health Services

By Luke Atkin

In Victoria diagnoses of new HIV infections have risen in recent years. In 1999 there were 140 reported new infections of HIV, in 2000 there were 97 new infections, in 2001 there were 219 new infections and 234 new infections in 2002.

Among males the highest diagnoses are for those men who are having sex with men. There are a diverse range of factors that not only place men who have sex with men at risk of acquiring HIV but also of acquiring other sexually transmitted infections (STIs). Relatively high levels of STIs are increasing the risk for this population. In the first quarter of 2003, 69 per cent of males infected with gonorrhoea acquired their infection from a male. New infections among males are greater than new infections among females. The majority of new infections reported during 2002 were from metropolitan Melbourne, however it is recognised that diagnoses also occur in rural Victoria and must be included in planning for programs.

Of the 234 new HIV cases notified to the Department in 2002, risks factors included injecting drug users (IDU) (1.7%), males reporting heterosexual contact (7.2%) and females reporting heterosexual contact (5.5%). Forty-five per cent of individuals reporting heterosexual contact were born in a country with a high prevalence of HIV such as sub-Saharan Africa, Caribbean, Cambodia, Myanmar and Thailand. Addressing the diversity of these at risk groups is a priority for the Department.

In July 2002 the Victorian government launched the Victorian HIV/AIDS Strategy 2002-2004. It provides a framework for focussing increased efforts in priority areas and endeavours to address the factors that impact on risk behaviour among specific populations, such as those prevalent among the gay community in Victoria, and ways in which behaviour change may be sustained. Additionally the strategy recognises that within the population of men who have sex with men there are a diverse range of sub populations including men who do not identify as being gay, culturally and linguistically diverse men, men in custodial settings, socially isolated men, men with disabilities and male sex workers.

In Victoria the prevalence of HIV infections among IDU is relatively low, however, experience abroad suggests that in populations such as this HIV can rapidly transmit through the sharing of injecting equipment. The high prevalence of Hepatitis C among the Victorian IDU population suggests the need for continuing programs within this population. Victoria currently has 16 primary needle and syringe programs (fully funded with their sole business being needle and syringe programs) and approximately 140 secondary needle and syringe programs who aim to prevent the transmission of HIV, Hepatitis C and other blood born viruses (BBV’s) through the provision of sterile injecting equipment, education and referral services.

There were 30 new HIV notifications during 2002 acquired through heterosexual sex among the Victorian population. Although this figure is lower comparatively than that for homosexual transmission, it is still recognised as placing particular people at risk. Those at risk include people from high prevalence countries or people who travel regularly to those countries, women who do not have the skills or education to negotiate safe sex for themselves and their partners, and sex workers employed in illegal settings or settings that do not permit them to negotiate safe sex. In addition an individual's vulnerability to HIV infections is also impacted on by the environments where they live and work, their beliefs governing behaviour, lack of access to services, information and education, poverty, homelessness and isolation, mental illness and language and cultural constraints.

The Department provides funding to a range of agencies to provide education and health promotion to preventing new infections among at risk individuals and the general community. The scope of the agencies funded is diverse to address the needs of as wide a cross section of the Victorian community as possible. Agencies include The Victorian AIDS Council, tertiary hospitals, community health groups and population specific organisations such as Positive Women.

Specifically the Department has initiated new and expanded programmes such as:

• The Victorian Multicultural HIV/AIDS, Hepatitis C and Sexual Health Service
• An outreach programme conducted by the Melbourne Sexual Health Service at sex on premises venues
• Re-establishing the Victorian HIV/AIDS and Hepatitis C General Practitioner Education Program in conjunction with ASHM
• The Victorian Chlamydia Community Awareness Campaign
• A sexual health promotion campaign targeting men who have sex with men to encourage testing and treatment

2. Further information about any of these initiatives is available from the Health Promotion Team Manager at VAC/GMHC.

Queensland

Queensland Health

By Dr Margaret Young

Over the past ten years, HIV notifications in Queensland have fluctuated between 85 (1993) and 119 (1996) with no particular trend in either direction. In 2002, there were 117 notifications of HIV infection compared to 97 reported in 2001. Data indicate that the vast majority of notifications continue to be among men who have sex with men, who reside in the more densely populated South-East corner of the state. Queensland Health will continue to monitor notification figures closely to see whether there is a sustained increase.

Regardless of whether or not a trend is established, the figures over the past ten years reveal that there are approximately 100 new cases of HIV infection per annum in Queensland. It is concerning that the number of people living with HIV/AIDS continues to rise steadily and that the number of new cases has not fallen in recent years. As a result, more and more people face a lifetime of chronic disease management. The cost to individuals is high, the economic burden of this disease on public health services increases and the risk to public health continues.

It is in light of this situation that Queensland Health has recently reviewed a range of programs and strategies to prevent further HIV transmissions. These include:

• The Communicable Diseases Unit together with the AIDS Medical Unit is working towards enhanced surveillance of HIV to improve demographic and behavioural data collected centrally to better inform prevention strategies.
• Further development of the partnership between Queensland Health and general practitioners to promote best practice in pre and post HIV antibody test counselling.
• Working with the Queensland AIDS Council (QuAC) to look at how and if the direction of this community organisation targeting gay men is meeting the needs of this population.
• Together with QuAC, exploring broader health issues for gay, lesbian, bisexual and transgender people and how services may address these.
• Working with QuAC in the development of a new campaign focussing on re-emphasising the safe sex / use condoms and lube message from an affirming perspective.
• Communicable Diseases Unit engages with the owners/operators of the gay sex on premises venues in the promotion of safe sex behaviours with their clientele.
• The Queensland Health Protocol for the Management of HIV Positive People Whose Behaviour May Constitute a Public Health Risk is being reviewed to maximise its impact.
• Collaboration with health officials from Papua and New Guinea and Indigenous communities, organisations and services in the Torres Strait and Cape York in proactive approaches to preventing HIV transmission in the Treaty Zone and neighbouring areas.
• Working with all relevant government departments in the development of the Queensland HIV, Hepatitis C & Sexual Health Strategy 2004-2007. Wider community consultation is being conducted in 2003.
• Funding research to investigate issues for men who have sex with men in rural and remote areas of Queensland, with a view to informing HIV prevention campaigns targeting this at risk group.
• Promoting access to Non-occupational Post-exposure Prophylaxis for HIV to high-risk groups.
• Working with the HIV positive community through Queensland Positive People to develop services and responses appropriate to their needs. The proposal for a new Life Enhancement Centre to be located in Brisbane has been taken to the Brisbane City Council.

The Queensland AIDS Council was unable to provide a response prior to the publication deadline.

Top

Keeping calm

By Michael Hurley

A calm resolve is still needed in our response to HIV in Australia. Getting spooked is easy. Anxiety and anger take over, years of careful work are ignored and generosity is lost. We’re in an increasingly challenging moment that looks likely to last for some time.

For this article I’ve been asked to historically contextualise responses to the epidemic in Australia and propose a way forward. I was also asked to ignite debate. To the extent I do, it’s in relation to the ‘gay epidemic’.

I’m wary of the brief. We are not in a crisis. There have been numerical increases in HIV infection, but on a ten year trend these increases have yet to make a mark. For the individuals affected, however, it’s a whole other story.

However, I have no problem with saying that the whole context of the response to HIV in Australia has changed (see Box 1).

‘Crisis’ began to be repositioned rapidly from the early 1990s on in lived gay cultures, even as the death rate rose. By then it was clear that most gay men were not infected, and that for those who were it was also possible to have a life in spite of illness and death.

In the mid 1990s, Dowsett and McInnes conceptualised the shifting relation between gay men and HIV as Post-AIDS (Dowsett 1996a; Dowsett & McInnes 1996a,b). Gay men were decentering HIV, refusing to live only in relation to crisis, to the threat of infection and only with a focus on disease. Negotiated safety had become a feature of sex in relationships (Kippax et al 1993: 153-154). People ‘living with’ HIV or AIDS had always had various relations to their diagnoses. ‘Living with’ refused to define quality of life solely by clinical considerations or media narrations of a ‘death sentence’. This occurred well before ‘new’ treatments, but was magnified by their success. Epidemic affected men were ‘over AIDS’, often irrespective of age or HIV status (O’Donnell 1996).

The situation for Indigenous people was different. Rates of HIV infection were not falling (Guthrie et al 2000). It became clear though that treatments uptake amongst HIV positive gay community associated Indigenous men was proportionate to non-Indigenous uptake (Willis et al 2002). While a majority of Indigenous people with HIV are gay associated, the ways that the virus has interacted with Indigenous sexualities has led to different outcomes in these communities.

Whether described as ‘Post AIDS’ or reduced to ‘post crisis’, the ways gay men renegotiated their relation to HIV has been very confronting. Educators recognised that gay and safe sex cultures were dynamic. The shift in how the epidemic was being thought about was difficult for those people living with HIV and AIDS in ongoing poverty, especially where health and welfare needs (Grierson et al 2002) were accompanied by persistent treatment side effects.

The nature of the major gay communities, the relation of many gay men to HIV and to the epidemic and their relation to community-based organisations formed in response to HIV change constantly (McInnes et al 2001a). The kinds of knowledge that currently inform social practice are of an order unthinkable in 1983 to1986 (Rosengarten 2000; Race 2001). Sexual practices and educational responses to them have also changed. Educators and researchers engaged with differences within safe sex cultures, and acknowledged how different kinds of risk management strategies were being used in different contexts (AFAO 1995,1996; Dowsett 1996b; Bollen et al 1998; Race 2002).

There are more people living with HIV and AIDS than there have ever been because treatment therapies are mostly keeping people alive and because there are ongoing infections.

The Periodic Surveys tell us that gay men’s sexual practices now involve more anal sex and more unprotected anal sex in casual contexts. Mostly ‘casual’ sex demonstrates informed improvisational capacity (McInnes et al 2001b; Van de Ven et al 2002a). Rates of testing and condom use remain very high (Van de Ven et al 2002b). HIV positive gay men continue to build cultures of care that are mainstays of HIV prevention (Hurley 2002).

Treatments and rates of treatment uptake are holding, though the need for salvage therapy is increasing.

The challenge becomes one of understanding both how different ways of doing gay involve different kinds of social practice and the relations between these forms of sociality and sexual practice. Why? So that interventions can help make sex more ‘practiced’ or be practised differently.

Gayness and health

Initial responses to HIV understood it as a gay issue, not a health issue. Illness and AIDS were narratives of horror, threat and fear. Gayness was represented as contagion. Gays challenged this by insisting on risk behaviours not risk groups. Manageability, whether of fear or of illness, was an issue for living, rather than a health issue. Infected and affected, gay men developed ways of living through crisis, including ‘living with’ HIV and AIDS.

Gay activism installed safe sex cultures. Safe sex culture is a gay culture originating in, but no longer defined by, or for many experienced as, a response to HIV/AIDS (Dowsett 1996b). It is still done by many in the name of gay, rather than in the name of health. There are strong tensions between public health priorities and health promotion driven by the needs of lived gay cultures.

Whole new layers of gay men have kept emerging: those who were being born when the virus hit; those who came out into crisis (1983), those who came out into treatments optimism (1996); those who have lived with condoms but not with crisis, and those of us who have lived through it all. We all now share common structures of gayness (laws, internet, television, organisations), but we have quite different experiences, value systems and relations to both gayness and HIV.

The average age of new infections creeps upwards. Men who are more epidemic connected over longer periods may be in the known groups likely to become infected.

What characterises the current moment? (See Box 2)

Focussing solely on either ‘barebacking’ or UAI with casual partners, or collapsing them into each other, fails to give due weight to the policy and practice infrastructures that support and frame the health of people living with HIV and safe sexual practices. Presenting single cause explanations of new infections is simplistic. It shows little understanding of what it means to live over time in a situation where sex is continuously framed by disease, ill health and moralising.

Political will

At a policy level, it would seem the Commonwealth government has reduced its commitment to ‘the partnership’ principle in responding to HIV. Several State governments have followed. The federal opposition and the minor parties are largely silent. The national HIV/AIDS advisory structure has been faltering since late 2001. The review of the HIV Research Centres and mid term review of the Fifth National HIV/AIDS Strategy were completed in mid 2002, but no reports have been officially released. The Commonwealth Department’s policy capacity, understanding of HIV programs and research and ability to service the advisory bodies in HIV/AIDS has been significantly diminished.

The approval mechanism for Commonwealth funded HIV education programs is under review for something like the third time in five years. Best practice in health promotion is being compromised by politics. That doesn’t mean arguments can’t be made for cultural relevance and targeted distribution (Leonard and Mitchell 2000). It does mean the job becomes harder.

The Australian HIV/AIDS ‘partnership’ has never been so diminished. The risk is a loss of national, professional knowledge structures and organisational memory of what works in HIV policy, social research and health promotion. The outcome would be reinventing the wheel: affected communities are at the heart of an effective response.

Relations between gayness and HIV

There is a tendency to mistake high levels of health literacy for practiced ways of being sexual. Much current, targeted health promotion is directed toward the more practiced. It needs to be, but not at the expense of other ways of doing gay. ‘Newness’ in and to sexual practices is a key issue in casual sex, in relation to HIV. McInnes et al. are right to insist that sexual adventurousness has to be understood in its own right and that health is not ‘something negotiated simply prior to and then implemented in sexual interaction’ (2003: 31). Strategic positioning is a practised way of being sexual, as is, arguably, accessing PEP. Between men of different or unknown serostatus, however, these are fallback positions - not best practice. Serostatus is the baseline and ‘not knowing’ is a problem. Practiced ways of being sexual are more unevenly dispersed than has been acknowledged by recent health promotion.

Increasingly there are ways of doing gay that distance the doer from gay embedded social knowledges (‘non-scene, straight acting’). If you don’t do gay sex in relation to well practiced modes of gay sociability (Hillier et al 2001; Weatherburn et al 2003: 17), that distance potentially puts you at risk. We need more attention to the relations between information, knowledge and sense making. This can’t be done by social marketing (Hurley 2003).

Some of this ‘distancing’ is a metaphor for perceived safety from HIV. Until now we have argued that non-gay identifying men who have sex with men are only at high risk when they interface with the ‘attached’ in contexts of high HIV prevalence. That’s so, but this is different. Identifying as gay and non-scene, when accompanied by other assumptions, arguably contributes to less well practiced sex. The assumptions are not just of the ‘he’s clean, he must be negative’ kind, or knowlege of relative risk in topping and bottoming, but also about testing and condoms. If ‘unattachedness’ to gay sociabilities is a key component of this specific gay social identity, then forms of health promotion that assume the desirability of ‘a look’ or the force of ‘gayness’ miss the point. That’s partly the lesson of ‘but it’s about HIV, so it’s not about me’.

New ways are needed to revitalise the Commonwealth government’s involvement. Having a working national AIDS advisory and policy infrastructure is crucial.

HIV education works best as respectful, pragmatic interventions into lived cultures. Perhaps the biggest challenge is in finding practical ways of installing gay sexual perspectives deeply in ‘practice’ while negotiating funder approval. The purpose is not to hide or manipulate or self censor. These perspectives are culturally relevant and totally justifiable. They also match what we know about visual ‘saturation’, representation and the limits of social marketing. We need to get cleverer again.

Tell us what you think of this article - email the editor.

References

AFAO (ed) (1995) Living Loving in an Epidemic, AFAO, Sydney.

AFAO (ed) (1996) Back to the Future. A Report from the Third National Australian Gay Educators’ Conference 1996, Australian Federation of AIDS Organisations, Sydney.

Dowsett, G. (1996a) 'Perspectives in Australian HIV/AIDS Health Promotion', in "NSW HIV/AIDS Health Promotion Conference: Keynote Addresses, Selected Papers and Future Directions", comp. NSW AIDS/Infectious Diseases Branch, NSW Health Publication (AIDS) 96-0067, Sydney, pp. 19-31.

Dowsett, G. (1996b) ‘Emerging Issues, Current Dilemmas and Persistent Problems in HIV Prevention among Gay Communities’, in AFAO (ed) Living Loving in an Epidemic, AFAO, Sydney.

Dowsett, G. and McInnes, D. (1996a) ‘Post-AIDS: Assessing the long term social impact of HIV/AIDS in gay communities’, X1 International Conference on AIDS, Vancouver, Canada, 7-12/7/96.

Dowsett, G. and McInnes, D. (1996b) ‘Gay Community, AIDS Agencies and the HIV Epidemic in Adelaide: Theorising ‘POST-AIDS’, Keynote address, ‘Out There Too’, Second South Australian Forum on HIV/AIDS Social Research and Practice, 14-15/3/96.

Grierson, J., Misson, S., McDonald, K., Pitts, M., & O’Brien, M. (2002) HIV Futures 3: Positive Australians on Services, Health and Well-Being. Australian Research Centre in Sex, Health and Society, La Trobe University, Melbourne.

Guthrie, J., Dore, G., McDonald, A., and Kaldor, J. (2000) ‘HIV and AIDS in Aboriginal and Torres Strait Islander Australians: 1992-1998’, Medical Journal of Australia, 172: 266-269.

Hillier, L., Kurdas, C. and Horsley, P. (2001) It’s Just Easier: The Internet as a safety-Net for same sex attracted young people, ARCSHS, Melbourne.

Hurley, M. (2003) ‘Electronic Technologies, HIV Education And Health Promotion. Targeting Gay Men And Men Who Have Sex With Men’, AFAO Discussion Paper, AFAO, Sydney.

Hurley, M. (ed) (2002) Cultures of Care and Safe Sex amongst HIV positive Australians, Monograph Series Number 43, ARCSHS, Melbourne.

Kippax, S., Connell, R., Dowsett, G. and Crawford, J. (1993) Sustaining Safe Sex. Gay communities respond to AIDS, Falmer, London.

Leonard, W. and Mitchell, A. (2000) The Use of Sexually Explicit Materials in HIV/AIDS Initiatives Targeted at Gay Men, ANCAHRD, Commonwealth Department of Health and Aged Care, Canberra.

McInnes, D., Bollen, J. and Race, K. (2003) Sexual Learning and Adventurous Sex, University of Western Sydney, Sydney.

McInnes, D., Bollen, J., Couch, M., and Dowsett, G. (2001a) Considering Australian Gay communities in HIV Health Promotion, UWS and ARCHSHS, Sydney.

McInnes, D., Hurley, M., Prestage, G., and Hendry, O. (2001b) Enacting Sexual Contexts. Negotiating the self, sex and risk in sex on premises venues, UWS, Sydney.

O'Donnell, M. (1996) ‘We deserve to live-again’, Outrage July, 34-37, 76-79.

Race, K (2002) ‘Recent revaluation of risk among gay men’, briefing paper, joint meeting, community representatives and Inter-Governmental Committee on AIDS and Related Diseases, AFAO, August, Sydney.

Race, K. (2000) ‘The Undetectable Crisis: Changing technologies of risk’, Sexualities (4)2:167-189.

Rosengarten, M., Race, K., and Kippax S. (2000) 'Touch Wood, Everything will Be Ok'. Gay men's understandings of clinical markers in sexual practice NCHSR, Sydney.

Van de Ven, P., Kippax, S. Crawford, J., Rawstorne, P., Prestage, G., Grulich, A., and Murphy, D. (2002) ‘In a minority of gay men, sexual risk practice indicates strategic positioning for perceived risk reduction rather than unbridled sex’, AIDS Care, 14(4): 471-480.

Van de Ven, P., Rawstorne, P. and Treloar, C. (eds) (2002b) Annual Report of Behaviour. HIV/AIDS, Hepatitis C &Related Diseases in Australia 2002, NCHSR, Sydney.

Weatherburn, P., Hickson, F. and Reid, D. Net benefits. Gay men’s use of the internet and other settings where HIV prevention occurs, Sigma Research, London.

Willis, J., McDonald, K., Saunders, M. and Grierson, J. HIV Futures II. Aboriginal and Torres Strait Islander people living with HIV, Monograph Series Number 30, ARCHSHS, Melbourne.

Michael Hurley is a Senior Research Fellow at the Australian Research Centre in Sex, Health and Society, La Trobe University, Melbourne.

The opinions and views expressed in this report are the author’s own and are not reflective of the views or opinions of the Australian Federation of AIDS Organisations.

This article was submitted on 22 August 2003 before the announcement of the Minister's new advisory committee (MACASHH) and before the release of the Government's response to the reviews of the National HIV/AIDS and Hepatitis C Strategies and the reviews of the National HIV Research Centres.

Top

The silence of lipodystrophy

By Asha Persson

“Get the community to talk about it in some way,” Adam, 36, Sydney.

At present in Australia, there is growing concern over a documented rise in HIV infections among gay men. This alarming trend is now at the centre of debates around safe sex and prevention strategies. In the shadow of this and other pressing concerns of HIV, there is another kind of rise in relation to HIV, namely a rise in the visibility of HIV, a phenomenon brought about by the lipodystrophy syndrome. [i]

Over the past few years, people whose body shapes have been changed by antiretroviral drugs have become an increasingly familiar sight in some urban areas. ‘Lipodystrophy’, though by no means a household word, certainly rolls more easily off the tongue in gay communities than it did a few years ago. As Rick, a Sydney man with HIV, said: “People know what’s going on, you know. People in the gay community know what lipodystrophy is and pretty much know now what it looks like”.[ii] Lipodystrophy, many agree, is the ‘new face of HIV’.

But is it? Or is it just an assumption that lipodystrophy is widely recognised and commonly interpreted as a sign of HIV? Whether this is actually the case is not particularly clear. There is definitely a recognition of lipodystrophy by and between individuals, but it is not often talked about openly or publicly. The question is whether HIV has, in fact, got ‘a face’ at the moment.

People deal with lipodystrophy in different ways depending on their personal biography, their disease history and social situation. But in light of the ongoing stigma of HIV, and a highly body-conscious society that shows little tolerance for body types that happen to fall outside the cultural ideal, it is no surprise that lipodystrophy is a socially and sexually isolating experience for many people affected by it.[iii]

Yet this often distressing effect of anti-HIV therapy receives relatively little community attention. Sure, we get the occasional article in the HIV media discussing the potential causes of lipodystrophy, or possible treatments for it (or lack thereof) and we get reports from Australian and overseas conferences about the attempts by medical science to solve this conundrum. Or, in more rare and awkward instances, graphic pictures of lipodystrophy are used to scare young gay men into safe sex, as in a recent HIV prevention campaign by the Stop AIDS Project in San Francisco.[iv]

But, apart from these sporadic media or scientific commentaries, there is a curious silence around body shape change in gay community itself. While lipodystrophy may be talked about among friends and partners, in peer groups, or privately with counsellors, there is an absence of broader public debate that addresses what lipodystrophy means, not just for individuals affected by it, but for the community as a whole. For something so visible, lipodystrophy is strangely invisible.

“It doesn't seem to be widely acknowledged, but yet you see everyone walking around with it”, commented Adam, a 36 year old man who recently started HIV treatment and who was concerned he might be developing lipodystrophy. “I think there is all this avoidance about it. You don't have any role models and positive people with ‘lipo’ coming out and saying, you know, ‘I have lipo and this is the effect it’s had on me’. There’s no educating younger people about what it’s like to have lipo, you know. You hear about what it’s like to be positive and all that stuff. But you don't hear about what it’s like to have lipo… There is a silence around it”.

Why this silence? Some people argue that they don’t want to make an issue of it, or give lipodystrophy more attention than it deserves. Others speculate that lipodystrophy simply brings up too many difficult issues around HIV to deal with. As Rick suggested: “Many people carry around so much stuff about their health and around the drugs. There’s just too much pain behind it, and fear, you know, so when people see things like lipodystrophy happening, they just go, ‘fear’, you know. They just close up even more”.

Whatever the reason for this silence, it has a certain impact. Some people with lipodystrophy argue that finding support or people to share their experience with is generally quite difficult. Max, who recently moved to the Northern Rivers, reflected that: “We talk about it happening, but we don’t necessarily talk about how we feel about it happening. I haven't experienced a lot of discussion, really meaningful discussion”.

Many are hesitant to approach others with lipodystrophy fearing they may ‘touch a raw nerve’ or acknowledge its visibility, which is precisely what concerns people the most. As 42 year old Matthew explained: “If someone else is suffering from it, I don’t like to bring it to their attention because I just feel it’s a negative thought, you know. I’m sure they are well aware of themselves. They don’t need me to remind them”.

For others, their own lack of support or unresolved issues around lipodystrophy can make it difficult for them to reach out to their peers, despite wanting to. One man, José, talked about this dilemma. “I feel I should go up and say ‘hi’, you know, ‘how are you going?’ I feel as though I should put my hand around them as though it’s a shared experience. And I don’t. I usually look the other way. I don’t like it when I do, but I think it’s because I haven't come to terms with it myself, I can’t reach out to other people”.

In contrast to this silence, there is a flurry of activity around lipodystrophy in the medical domain. For a community that has long and actively resisted medicalisation, it is peculiar to note that both the problem and the solution of lipodystrophy have more or less been handed over to the medical profession. No doubt, this entrustment of lipodystrophy to medicine lends it a certain legitimacy as a serious problem deserving of scientific attention, perhaps offering a rightful sense of vindication after years of body shape change being dismissed as a mere ‘cosmetic’ concern.

But is this enough? Considering that body shape change is not only a medical problem, but also a social issue, it might deserve some genuine community attention and soul-searching as well. Lipodystrophy is more than the sum of its metabolic complications. It is also about body image and sexuality. It’s about HIV stigma and HIV survival, about the practices of pharmaceutical companies, community, health, aging, gender, and much more. Passing the problem on, wholesale, to medical science in effect depoliticises lipodystrophy and obscures the social factors that contribute to its significant impact on people’s lives.

Moreover, widely adopted medical terminology, such as ‘abnormal’, has a tendency to pathologise lipodystrophy and unnecessarily reinforces its already negative image. Representations of lipodystrophy as ‘disfiguring’ or ‘bizarre’ shape how it is experienced and perceived and thus limits the community’s ability to forge alternative ways of understanding and seeing lipodystrophy - ways that do not marginalise people, rely on fears of HIV, or ignore the realities of HIV treatments.

As Alf, a Sydney man, stated: “People actually construe lipodystrophy as always negative, you know. It’s not always negative…It can actually be really nice sometimes”. Referring to a sense of brotherhood in survival, he explained: “To be, you know, on the dance floor at Mardi Gras or the Inquisition party and there’s a whole heap of guys you’re dancing with and you look around and you think, ‘they’re all positive’. You know, that’s great. Yeah, you can see it”.

To reclaim body shape change as something the community lives and deals with in constructive and supportive ways, there is a clear need to rethink and demystify lipodystrophy, for example through education campaigns or projects that address and challenge the social issues at the heart of lipodystrophy and, indeed, HIV. Talking about lipodystrophy should be part of a wider need to talk about HIV in a time of a changing epidemic and rising infections - not in order to further stigmatise or demonise, but to truly (or truthfully) give HIV ‘a face’.

This kind of approach would build on, and revitalise, past achievements. While the work is far from complete, community activism has nevertheless been quite successful in gradually turning around perceptions and representations of HIV/AIDS in society at large. Why not lipodystrophy within its own domain? Lipodystrophy offers an opportunity for collective discussion, not only about body image, but HIV in general, and can serve as a catalyst for lifting silences around a range of issues.

Tell us what you think of this article - email the editor.

Asha Persson is a Research Officer at the National Centre in HIV Social Research

[iv] www.stopaids.org/news/press_releases/

Top

The Journey from AIDS dementia complex to complex needs

By Robert Attwood

There has been a reduction in the incidence of AIDS Dementia Complex (ADC) but over the past six years there has been an increase in the number of HIV positive people with complex needs who require specialist case management. What does this emergence of complexities represent? For some HIV positive people, HIV has affected their cognitive abilities, which has reduced their ability to maintain optimum health and to access care and treatment. Presenting in crisis with a broad spectrum of medical and psychosocial issues often creates management difficulties that local community services are unable to manage alone.

As early as 1993, an increasing awareness had developed across the health system of the need to specifically address the complex issues related to ADC and HIV-related psychiatric conditions in HIV positive people. The result was the establishment of the (then) AIDS Dementia and HIV Psychiatry Service (ADAHPS) in 1996, which aimed to improve access to specialist care. The service later changed its name to Adahps: Services for People with HIV and Complex Needs. The integrated model relies on a combination of medical, psychiatric, palliative, psychosocial and community care skills within small specialist units and an outreach team working alongside existing services across NSW to improve outcomes for clients, carers and services.

The model for the outreach team was structured to provide a secondary and supportive role in order to coordinate a client’s care in conjunction with local services. In addition, it was perceived that primary services might need to re-orientate their service delivery to a longer-term model of care. As such, case management was identified as an ideal approach as it not only assumes that clients with complex and multiple needs will access services from a range of service providers, it also sets the goal to achieve seamless service delivery through the collaboration of existing services.

Service referral criteria in 1997 consisted of people with ADC, HIV-psychiatric conditions and those with a pre-existing mental illness where the presence of HIV/AIDS had worsened their mental state. Unfortunately, the criteria did not anticipate the emergence of an increasing number of people with cognitive impairment related to other factors outside of the two primary referral criteria (ADC/mental illness). Towards the end of 1999, the service expanded the referral criteria to include complex needs to acknowledge the increasing number of people with suspected - but not formally diagnosed - cognitive impairment.

Figure 1 shows the comparison of referrals under the 1997 criteria (ADC, HIV-mental illness and cognitive impairment) with the 1999 broadened criteria through which was found an even larger group – that of complex needs.

There were comments from agencies that some clients did not have a confirmed diagnosis of either ADC or a mental illness but had multiple other problems combined with a chaotic lifestyle. Agencies reported that these clients often refused any investigations that might confirm a diagnosis, which led us to more closely examine complex needs (Figure 2.).

The complex needs in Figure 2 are not singularly the reason for referrals. Often clients referred had several of these complex needs at once. The three largest groups were “drug and/or alcohol”, “psychosocial” and “other mental health”, which equaled 71 per cent of the total. The category of “drug and/or alcohol” included clients whose current level of use impacted on their ability to plan and organise their daily activities and those clients whose prior history of use had made interpretation of current diagnosis difficult. Included in the “psychosocial” category were carers who were unable to manage and required increased support, clients with poor social skills and clients who were isolated, with little or no social circle such as family or friends. Included in the category of “other mental health” were behaviour disturbance, personality difficulties and adjustment disorders. The fourth largest group was “adherence”, which represents a number of clients who were being prescribed medications (such as highly active antiretroviral therapy or anti-psychotics), but who were experiencing difficulties with maintaining the regimes.

Table 1 shows the range of services sought for clients from 1997 to 2002 and represent requests for services in each year and are not cumulative from year to year. Note that the increase in therapy services provided in 2000 was due to a particular project undertaken by a staff member and was time limited to that year.

As is evident in Table 1, the demand and range of services has increased over time, particularly from 1999 onwards with the largest increase being for case management services, which have nearly doubled from 34 (1997 - 1999) to 61 (2000 – 2002). The increased demand for assessment relates to the increasing number of neuropsychological assessments being provided, which are undertaken to provide a baseline level of cognitive ability and/or assist with definitive diagnosis.

Figure 3 represents the number of our clients who were prescribed HAART at the time of referral. While on average approximately 50 per cent of the clients were prescribed HAART, the percentage of clients referred for medication/adherence difficulties remains relatively small (9 per cent from Figure 2).

Literature suggests that the clients we are describing may be too impaired, disabled or chaotic to manage the often-difficult regimes of taking HAART, however our data seems to indicate otherwise.

HIV infection rates in Australia remain relatively low at 0.1 per cent of the population. Of this, around 9,000 people are defined as having AIDS. These low rates are primarily due to Australia’s comprehensive national approach to responding to HIV/AIDS which has long been regarded as one of the best in the world. However, the increasing number of people being referred to ADAHPT with complex needs would seem to indicate an increasing role for case management by HIV services.

References

National Centre in HIV Epidemiology and Clinical Research. Australian HIV Surveillance Report. Vol 19(2), June 2003.

Case Management Society of Australia. http://www.cmsa.org.au/definition.html

NSW Health, AIDS/Infectious Diseases Branch. Report of the Review of HIV/AIDS Care and Treatment Services in New South Wales. May 2000.

Robert Attwood is a Welfare Officer for ADAHPT.