|Partners in Prevention: International case studies of effective health promotion practice in HIV/AIDS (Best Practice - Key Material) (UNAIDS, 1998, 84 p.)|
by Lou McCallum, Executive Director,
Australian Federation of AIDS Organisations, and Don Baxter,
former Executive Director, AIDS Council of New South Wales Sydney, Australia
OVERVIEW AND CONTEXT
It is estimated that there were 11,080 people living with HIV infection in Australia at the end of 1996. HIV incidence is thought to have peaked in 1994 and a slow but steady decrease in incidence is expected over the next few years. The cumulative number of HIV infections in Australia to the end of 1996 was 16,700, and 95% of these are in men. Incidence of HIV is not evenly distributed geographically across Australia, but concentrated in particular States and cities: 63% of people with HIV reside in New South Wales, 18% in Victoria, and 9% in Queensland-in order, the three largest States. There have been 7,532 people diagnosed with AIDS in Australia since the first case was identified in 1982, and 96% of these were men. Of these, 5,373 have died.
The number of new diagnoses of HIV infection is around 500 cases per year, and there are approximately 200 newly acquired HIV infections each year, i.e. infections definitely acquired only in the previous twelve months. Transmission of HIV in Australia continues to be predominantly linked to sexual contact between men. Over 85% of all HIV transmission in Australia is thought to have occurred this way. Needle-sharing during injecting drug use is the second most common mode of transmission, accounting for approximately five new infections per year (National Centre in HIV Epidemiology and Clinical Research 1997).
Key organizations and players
The response to AIDS in Australia has been characterized by a partnership between government, health providers, researchers and affected communities. The national approach has been guided by successive national HIV/AIDS strategies since 1989, based on a set of principles, policy guidelines and activities developed from 1985 onwards. These strategies have set out basic principles, including the non-partisan political approach to HIV/AIDS, the partnership with non-governmental organizations and the affected communities, and the central role of people with HIV/AIDS in the response.
Australia is divided into six States and two Territories. These States and Territories have responsibility for health service provision. The federal government allocates funds to the States and Territory governments for HIV/AIDS initiatives under the strategy. Currently, State and Territory governments are committed under the strategy to match these funds dollar for dollar. The range of government and non-governmental organizations involved in Australia's response are listed in the table below.
Australian Federation of AIDS Organisations (AFAO)
State and Territory governments
State and Territory AIDS Councils, PLWHA
The federal government funds the peak NGO body, the Australian Federation of AIDS Organisations (AFAO), and State and Territory governments fund State and Territory NGOs. AFAO's role is to advocate at a national level on behalf of NGOs. The other national peak NGOs which are members of AFAO are: Australian IV League (AIVL), a national organization representing the interests of injecting drug users; National Association of People with HIV/AIDS (NAPWA), the peak PLWHA group; and Scarlet Alliance, a national group representing sex workers.
Each State and Territory has an AIDS Council, which is a community-based NGO responsible for HIV education and care and support activities. AIDS Councils were formed by early 1986 by members of the gay communities in each State and Territory capital city with funding from State and Territory governments. The work of the councils is usually divided between education and prevention activities in the gay community and the care and support of PLWHAs. Gradually, PLWHA, sex worker and injecting drug-users' (IDU) community organizations were set up in most States and Territories. Sex worker and IDU organizations focused on education, prevention and advocacy activities among their particular target groups, and PLWHA organizations generally provided information, support and advocacy for PLWHAs. In some States and Territories, representatives from AIDS Councils, PLWHA, sex worker and IDU organizations were invited to participate in State AIDS policy advisory committees, which coordinated programme and policy development at State level.
In 1987, State and Territory AIDS Councils joined with the national PLWHA, IDU and sex worker organizations to form AFAO, which would be responsible for advocating on behalf of AIDS community organizations at a national level and for facilitating communication between State and Territory community organizations. Since that time, AFAO has participated in successive national AIDS advisory committees and in the establishment and review of the first, second and third national AIDS strategies. AFAO has developed a strong partnership with the Commonwealth Department of Health and with successive Commonwealth Health Ministers.
History and structure of the community-based response
The first case of AIDS was diagnosed in Sydney in 1982. The gay community in Sydney had recently won a long battle for anti-discrimination law reform and had a range of community organizations and structures which were able to be mobilized to respond to HIV/AIDS. Similar organizations were established by this time in other Australian capital cities. As gay men were being diagnosed with HIV infection or AIDS in Sydney and Melbourne hospitals, volunteers from gay organizations were asked to help with emotional and practical support. Gay men and their friends began forming groups to provide home care and emotional and financial support. Existing gay groups such as the Sisters of Perpetual Indulgence (an Order of gay male nuns) obtained safe sex materials for similar organizations in the United States and modified them for Australia. A newly-formed AIDS charity, the Bobby Goldsmith Foundation, also produced a safe sex pamphlet in 1984-the first Australian material of its kind and funded by the gay community.
A group called the AIDS Action Committee was formed in Sydney and eventually became the AIDS Council of New South Wales (ACON) in 1985. At about this time, the Federal Health Minister, Dr Neal Blewett, travelled to San Francisco and was convinced that a collaboration between government and the affected communities in Australia would be essential to dealing with AIDS. A gay charity and a volunteer care and support organization had already been formed in response to increasing numbers of gay men being diagnosed with AIDS. ACON attracted a small grant direct from the Commonwealth Government and began to produce campaign materials targeted at gay men from 1985 onwards. Eventually, the New South Wales State government took over funding of ACON so that it could produce prevention materials, hold safe sex workshops, advocate for policy development and train volunteers to care for people with AIDS at home.
A similar process was under way in Victoria (the State with the second highest HIV and AIDS prevalence) and a community group called the Victorian AIDS Action Committee had been formed. State and Territory governments soon became convinced that funding gay community NGOs was the most likely way to prevent further spread of HIV. At the same time, the already established Australian Prostitutes Collective began to provide condom campaigns for sex workers and brothels.
There were two key factors which led to success of this community response. The first was the commitment by government to mobilize the affected communities and resource them to provide prevention and care. This was based on the assumption that the communities themselves would produce the most appropriate campaigns and would reach people at risk in a way that government could not. It was also assumed that people from marginalized communities would not present for HIV testing unless their communities supported government initiatives and were supported by government.
The second important factor was the experience that the gay community had developed through the law reform process in establishing and maintaining community organizations. Debate and disagreement flourished in the affected communities, but the experience in working together in community organizations meant that decision-making processes were in place and that progress could be made despite the existence of a wide range of views and perspectives.
Several years later, the Commonwealth Government commissioned the development of a national AIDS policy discussion paper in 1988. This paper was developed following consultation with governments, health workers, researchers and NGOs. The paper established the first ideas about the 'partnership' response to AIDS in Australia and set out a policy and funding framework for its establishment (Commonwealth of Australia 1989, 1993, 1996).
CONCEPT OF PREVENTION
Principles of prevention (guidelines and theories used to develop progammes)
A set of fifteen guiding principles for the design, development and implementation of successful education and prevention programmes emerged over the decade 1984 - 1994 as community organizations responded to the crisis. These principles, set out below, were developed in the wider context of national government that saw the desirability of political leadership and government commitment early in the epidemic. Its key symbolic message to the affected communities was in effect: 'We want you to survive'. This contrasted starkly at the time with the (then) key message of the US Government to its affected communities: 'We don't care if you die'.
While Australian governments recognised the desirability of most education being conducted by affected communities, they set about removing some of the legal and structural barriers inhibiting prevention efforts. These measures included:
· decriminalizing homosexual sex;
· removing barriers to condom accessibility and availability;
· removing criminal sanctions on carrying injecting drug use equipment;
· adopting 'harm minimization' - rather than 'zero tolerance' - as the underlying principle of prevention programmes;
· establishing and defending a large-scale needle/syringe availability programme;
· enacting legislation guaranteeing confidentiality of HIV test results;
· enacting other antidiscrimination legislation and conducting associated public education campaigns.
Within this wider context, the affected communities were able to focus on developing, testing and implementing the following fifteen principles for the successful implementation of education and prevention programs.
1. Education designed and delivered by peers is likely to be more effective than education developed and delivered by other 'external' agencies - especially in marginalized communities suspicious of government and its operations.
2. Sustained behaviour change on a wide scale is more achievable through a programmatic focus on influencing social and community norms and beliefs, rather than by a focus on changing individual responses.
3. Education programmes should involve the community in discussion and debate about the range and nature of measures it could take to reduce the impact of the epidemic.
4. HIV-positive people should be involved in all phases of programme design, from initial concept through development to content and delivery.
5. Education should be 'sex positive'.
6. Education should be 'sexuality positive'.
7. Language, images and processes used should be those already existing in the community involved or generated by that community.
8. Language and images used should be direct, explicit, understandable and simple.
9. Campaigns should target high-risk behaviours rather than high-risk groups.
10. Resources and information need to be made available to assist communities coping with change.
11. The objective of information programmes is to provide people from affected communities with sufficient information and support to make their own safe decisions rather than providing a prescriptive set of rules.
12. Education programmes should take great care to share equally the responsibility for preventing new infections between those infected, those not infected, and those unaware of their HIV status.
13. Education programmes should be vigorous, continuous and have the capacity to adapt flexibly to changes in the epidemic and to changes within communities.
14. Education programme design should be supported by an active, reflexive social research programme.
15. These principles need to be endorsed and supported by the political and community leadership.
These principles sit very comfortably within the framework of the Ottawa Charter. Interestingly, however, in Australia their genesis in the mid - 1980s arose more from the political and social activism of the gay community and sex worker communities responding to a health crisis rather than a considered and systematic application of the Ottawa Charter principles. In retrospect, it is clear a more rigorous analysis and application of the Ottawa Charter principles could have allowed a more systematic and all-encompassing approach in the early stages of the epidemic.
Specific approaches to prevention
AIDS Councils designed campaigns to encourage a 'safe sex culture' (Dowsett 1990) rather than focus on individual behaviour. The ACON 'Outliving, Outloving, Outlasting' campaign in 1988 is a good example of this approach. This campaign was made up of a series of elements, campaign materials such as posters, T-shirts, caps and brochures, accompanied by community workshops on safe sex, community events, outreach to bars, beaches and discos, the launch of a safe sex hit song to be played in discos and the placement of stories about safe sex in the gay press. All of these elements contributed to the development of a community acceptance of condoms and safe sex.
Endorsement of, and involvement in, these campaigns by community opinion-makers, commercial venue-owners and community entertainers - in Sydney this usually means drag artistes - is essential to their success. An early - and long-term - success has been the establishment of a volunteer outreach team, the 'Safe Sex Sluts'. These volunteers, usually wearing attention-getting drag, appear at many gay community events and institutions, dispensing safe sex equipment and advice. This team implicitly manifests many of the principles articulated above. The Sluts use gay community iconography to re-affirm the validity of an active sex life and of gay identity. The team reinforces safe sex behaviour in a non-threatening yet persistent and often imaginatively challenging way, and it is able to penetrate a wide range of community events and meeting-places - from large-scale dance parties to smaller events, commercial entertainment venues and sexual meeting places.
Campaigns carried out by AIDS Councils at this time focused less on HIV testing and more on safe sex for all, irrespective of HIV status. These campaigns promoted the use of condoms 'every time' for sex between men. This was a deliberate strategy to present a simple message in order to increase condom use in gay communities. The test became available in early 1985, and testing policies were developed to promote anonymous testing with tight protections on confidentiality. Pre- and post-testing counselling policies were also put in place. Prevention campaigns were then developed in a context of the availability of free anonymous HIV testing and counselling. Gay men presenting for HIV testing were taught skills in negotiating safe sex with partners in HIV counselling sessions. This often involved striking a 'contract' with their existing primary partner for no condom use within the primary relationship but strict condom use outside the relationship. This was accompanied by a discussion of the skills required to disclose to the primary partner if there had been unsafe sex outside the relationship so as not to put him at risk. This system of negotiation was later described as 'negotiated safety' by social researchers (Kippax et al. 1993a).
At the same time, sex worker and injecting drug user groups were emerging and designing campaigns and initiatives to target sex workers and users. Sex worker groups used outreach strategies to visit streets and brothels in order to distribute condoms and water-based lubricant and to talk with sex workers about AIDS and sexual health. IDU groups designed campaigns to reduce needle-sharing and to promote the availability of clean injecting equipment through mobile and fixed-site needle and syringe exchange services. Needle exchanges, which had been established in most States and Territories by 1988, were initially politically sensitive; however, they represented a significant policy shift towards harm minimization and a recognition of the public health risks associated with injecting drug use. At that time, there was a fear that HIV infection, mostly contained within the gay community, would spread to the 'general community' though the 'bridge' of sex workers and injecting drug users. This strengthened the resolve of governments to support sex worker safety and needle and syringe exchange programs.
Relationship with research institutions
An important collaboration between the AIDS Council of New Wales and the School of Behavioural Sciences at Macquarie University, Sydney, developed early in the epidemic. Researchers and community organization activists worked closely together to develop research questions and to design studies that would provide guidance to both community organizations and government for the design of campaigns and programmes. Various steering committees, comprising researchers, community workers and government bureaucrats, were established and provided a forum for discussion of social research needs. Several important studies emerged from this collaboration and continue to provide essential information to guide campaigns and programs. (Much of this research has been summarized in Dowsett 1994.)
The collaborative approach had several distinct advantages. Research questions were developed in response to the changing context of HIV prevention in the affected communities; researchers could gain access to the subjects they needed for their work; governments accepted the community's recommendations for changes to campaigns and programmes as they were backed up by research findings. This collaborative research model requires a high level of cooperation and trust between researchers and communities. It is a relationship of 'managed tension': communities generally want quick answers so that they can respond to changing circumstances, researchers want rigour so that their research results can be trusted; community processes are inclusive and collaborative, the academic environment is highly competitive and has its own pressures, such as the need for peer review. The early collaboration between Macquarie University and ACON was one factor that eventually led to the establishment of a National Centre for HIV Social Research (now the National Centre in HIV Social Research) which has played an important role in Australia's AIDS response. The Commonwealth Government also funded research through its traditional academic research funding mechanisms, with earmarked funds so as to develop research outside that done in the national centres1, and a number of independent academic researchers have worked in a number of States and Territories on social and behavioural research projects on behaviour change, prevention education, needs assessment and evaluation. The combined efforts of these independent researchers and the national HIV research centres has provided Australia with a very successful and focused research programme as an integral part of the national AIDS strategy. Research collaboration was greatly assisted by the employment of researchers with HIV and researchers from the affected communities in many of these research programmes. These people brought an additional perspective to the work of researchers and allowed for the development of strong links between the research and PLWHAs.
1 There are three national HIV research centres: National Centre in HIV Virology; National Centre in HIV Social Research; and National Centre in HIV Epidemiology and Clinical Research.
The development of the partnership
NGOs were originally established from within the metropolitan gay communities in response to the diagnosis of people with AIDS. These small community groups provided the initial volunteer care and support for people with AIDS, raised money to assist people with AIDS, and began to develop information and education materials about AIDS. These NGOs gradually secured funding from government as it became clear that there were significant numbers of people with AIDS in the gay community. Government funds were used by NGOs to develop campaigns and education materials aimed at informing gay men about safe sex. Gradually, governments in the most affected States and Territories established funding programmes to assist NGOs to reach gay communities, injecting drug users and sex workers.
A national AIDS policy discussion paper developed in 1984 proposed the establishment and funding of a partnership response to AIDS, and brought together governments, health workers, researchers and NGOs from the affected communities through the establishment of a National Advisory Committee on AIDS to oversee the national response to public education awareness and community needs. This committee worked in tandem with a medical advisory committee in providing the Commonwealth Government with advice. These two committees were eventually joined together to form the Australian National Council on AIDS (recently renamed the Australian National Council on AIDS and Related Diseases to represent more accurately the breadth of concerns of the third national strategy).
Structure of the partnership
The community/government partnership operates at several levels and its structures are mirrored at these levels. At a national level, the Commonwealth Health Department provides funding to the national AIDS NGO (AFAO) but does not sit on its management committee. AFAO negotiates an annual plan of activities with the Commonwealth and provides an annual report on performance indicators and outcome measures, but AFAO is accountable to its member organizations (the State and Territory AIDS NGOs and national sex worker, IDU and PLWHA NGOs).
The relationship at this level is probably best described as a 'creative tension'. AFAO has autonomy to develop its policies and positions on issues independently and has often publicly expressed its dissatisfaction or disagreement with government policy. AFAO generates its policies and positions by consulting with its member NGOs. In general though, the Commonwealth's AIDS policies and positions are arrived at using a collaborative and consultative process, and there is a general understanding in the partnership that either side will attempt to resolve and policy differences directly before involving the press or community mobilization strategies and/or protests. There is also a generally accepted policy of 'no surprises' in the partnership, i.e. no public criticism of the other partner without warning them beforehand that this public criticism is going to be made. This has led to a high level of trust and cooperation between members of the partnership. It would be unusual for either side to arrive at a policy or position on a controversial AIDS issue without first consulting the members of the partnership and discussing the position that is proposed. For example, on major issues, such as HIV testing policy or HIV vaccine development policy, the Commonwealth Government has undertaken a consultative process to arrive at a position.
AFAO and NAPWA are represented on key decision-making and consultative bodies such as ANCARD, the principal national advisory committee to the Commonwealth Minister of Health, and its various subcommittees on research, education and clinical trials. AFAO is also represented on the Intergovernmental Committee on AIDS and Related Diseases, the body responsible for communication and coordination between the Commonwealth, State and Territory governments on HIV/AIDS issues.
Campaigns and other materials produced are generally presented to government for approval, although the level of scrutiny varies according to the political context and the level of trust between government and community organizations. At a State and Territory level, AIDS Councils, IDU, PLWHA and sex worker organizations are generally funded by, and work in partnership with, their State or Territory governments, even if the funding originally came from the Commonwealth. Many States and Territories have their own Ministerial AIDS Advisory Committees to advise Health Ministers on policy and programme issues. Community organizations are generally represented on these key decision-making bodies. Policies regarding the approval of campaign materials vary from State to State, but AIDS Councils generally develop comprehensive campaign briefs to inform government of the rationale for particular campaigns. State and Territory community groups also develop strong links with service providers at State level to assist them in providing care and support services.
Although these structures are important, the most important aspect of the partnership has been the commitment by government and community to work together to make the partnership work. Building trust and mutual respect takes time and commitment. Community NGOs and government have different basic aims, different sources of accountability, different processes for decision-making and different constituents. While governments often see NGOs as unpredictable and reckless, and NGOs see government as conservative and fickle, these two sectors have had to learn methods of communication and trust and these have been tested along the way as issues emerged.
Although these two sectors have worked closely together in this partnership it has been important for each to remain separate and autonomous. Community-based NGOs have to maintain their connection with their communities if they are to represent and serve them effectively. They cannot be, and cannot be seen by their constituents to be, too close to government. HIV/AIDS community groups have maintained this separation by ensuring that policies and positions on issues are developed in consultation with affected communities and that people with HIV occupy a central place in their decision-making structures.
Role of community in the partnership
At all levels of the partnership, the community organizations have a key role in bringing the perspective of people with HIV, people at risk and people affected by HIV to the decision- and policy-making setting. Governments decided quite early in the Australian HIV epidemic that access to the affected communities and the trust of these marginalized communities was only going to be achieved by funding and maintaining a relationship with NGOs formed from within those communities. Community NGOs have been responsible for the design and implementation of education campaigns and other initiatives to maintain safe sex behaviour and safe needle use. These initiatives have included:
· the provision of support groups for people with HIV and people at risk;
· outreach to bars, dance parties and other community events;
· work with sex venues such as brothels, saunas and video clubs;
· provision of information to community social and sport clubs;
· groups for ethnic sub-communities within the gay communities;
· outreach to sites of sex between men such as public toilets, parks, etc.;
· services for subgroups within the community such as deaf gay men.
Community-based NGOs also provide care and support services for PLWHAs and their carers. These services train and support volunteers from within affected communities to provide care at home. This has a spin-off education/prevention effect within communities, as volunteers receive training and support to assist them in maintaining safe behaviour or in dealing with their HIV status. These NGOs also provide essential information to government to assist in policy setting. They advocate on behalf of people with HIV and people at risk to ensure that discrimination and stigma are minimized, health service quality is maximized and access to HIV treatments is ensured.
Community NGOs also play a key role in producing and disseminating information to their communities on risk, HIV transmission, HIV treatments and services. This information is presented in language and formats that are more likely to be understood by and acceptable to affected communities. Publications have included a bimonthly, issues-based magazine (the National AIDS Bulletin), a quarterly publication on legal issues (HIV Legal Link), monthly and bi-monthly treatments information newsletters (Positive Living and HIV Herald) and community newsletters for sex workers and injecting drug users.
Involvement of PLWHAs
It is often stated that people with HIV have played a central role in the national response to HIV in Australia. Although this is true in the main, creating and maintaining a place for people with HIV in the response has not always been easy, and people with HIV still find that their place is not guaranteed. In the early years of the epidemic, people with HIV were predominantly involved in HIV care and support programs and advocacy for HIV treatments and human rights. Over a period of time, there has been considerable discussion and debate around their inclusion and involvement in the development of HIV prevention campaigns and initiatives, including the use of specific messages relevant to people with HIV and imagery that depicted people living with the virus. These issues were worked out over time; however, they highlighted a tension in community prevention campaigns in Australia between the need to target the gay community and the fear that using images of people with HIV would 'blame the victim' for HIV transmission and place additional stigma and blame on people with HIV. PLWHA groups are now actively involved in the design of prevention campaigns and in the use of HIV positive imagery and messages in prevention campaigns.
People with HIV and the groups that represent them also play a key role in policy and programme development at all levels of the partnership. The involvement of people with HIV relies heavily on the existence of laws and policies that protect their privacy and provide protection against stigma and discrimination. Until these were in place in Australia, it was difficult to maintain the contribution of people with HIV to the response as their participation required a level of public disclosure of their HIV status. The availability of people with HIV who are prepared to speak publicly about their HIV status has been of particular value. Prevention and care messages delivered by HIV positive people have a particularly strong impact. These people also act as role models for other people with HIV. HIV positive 'speakers bureaux', which train HIV positive people to present information on HIV to schools and community groups, have been successful in reducing stigma and discrimination and in increasing HIV awareness.
MEASURES OF SUCCESS
There are several indicators of success for education/prevention initiatives. At a micro level, campaigns are focus-tested, process-evaluated and their impact on communities is measured. Community NGOs evaluate information and support interventions using client satisfaction, impact evaluation and other measures. Initial behavioural studies of gay men undertaken in 1986 (Kippax et al 1993b) indicate a significant behaviour change had occurred among gay men in New South Wales. Since these, there have been longitudinal studies and 'snapshot' surveys that indicate sustained changes in risk behaviour and assess the impact of the overall prevention program. The Sydney Gay Men and Sexual Health (SMASH) cohort provides ongoing information on patterns of risk-taking among Sydney gay men. This study has been replicated in Melbourne and Brisbane (the two cities with the next largest gay communities after Sydney). In addition, 'snapshot' surveys have been carried out in HIV testing clinics and at gay community events. There have also been two nation-wide anonymous telephone surveys, which have provided information on risk activities among non gay-identified homosexually active men. Studies and surveys of injecting drug use patterns have also been conducted.
The first and the second national HIV/AIDS strategies have been comprehensively and independently evaluated. The evaluation of the second National Strategy was carried out in 1995. The report noted that the reduction in new infections to date among gay men and the maintenance of a low incidence among injecting drug users have been major achievements. However, the evaluation report pointed out that, with current trends, the partnership would not reach its stated target of a reduction in new infections to two per 100,000 people per year. The report urged the partnership to develop new strategies to reduce new infections further. The report also noted the need to design new approaches to deal with the emerging epidemic among Australia's indigenous communities. These communities had not been comprehensively targeted in the first two national strategies.
AT WHAT COST?
Expenditure on prevention programmes
The national AIDS strategies have framed the allocation of specific funding for HIV/AIDS through the public health program. The Commonwealth allocates the majority of this HIV/AIDS funding to the States and Territories using a formula based on prevalence and general population size. Funds are distributed at State and Territory level between government and non-government services. States have, until recently, been required to match the Commonwealth allocation on a 1:1 basis. Some States, such as New South Wales, which has the overwhelming majority of people with HIV, have committed funds well beyond the required 1:1 match. Funding for hospital care is met through Medicare, a national funding agreement between the Commonwealth Government and States and Territories, and pharmaceuticals are funded through a national pharmaceutical funding scheme.
The first national AIDS strategy called upon States and Territories to allocate 50% of AIDS funding to education/prevention and 50% to care and support services. The second national strategy, in recognition of the increasing number of people with HIV requiring care, shifted this proportion to 60% for care and support, and 40% for education and prevention. To some extent, these proportions had little meaning as the definition of education and prevention was not clear and often included provision of HIV testing and sexual health services. Most targeted education and prevention campaigns have been carried out through NGOs and the proportion of NGO funding has remained low.
The first national strategy (1989 - 1993) allocated approximately AU$8 million per year for four years for education and prevention. This was matched dollar for dollar by the States. Under the first national strategy, approximately 8% (AU$3.5 million per annum) of the education and prevention budget was allocated to State and Territory AIDS Councils for gay men's education. The Commonwealth also kept back some funds for national education campaigns. In the second national strategy (1992/1993 - 1995/1996) AU$24 million was allocated to States and Territories, which was matched 1:1. The strategy called for a minimum of 40% of the matched funding allocation to be spent on education and prevention programs, with priority given to funding community organizations working with high-risk target groups. The strategy did not specify what proportion of funds as to be allocated to NGOs at State and Territory level.
The third national AIDS strategy (1997/1998 - 1999/2000) was produced in the broader context of related communicable diseases and sexual health. It allocates a similar annual amount overall but does not specify how the allocation is to be distributed within States and Territories. It identifies gay men and other homosexually active men as the primary target for education and prevention. The strategy is being implemented in an environment of health service reform, which is giving States and Territories increased autonomy in relation to health service provision and increased flexibility for budget allocation and priority setting, but within a much broader definition of public health goals, one that focuses less on specific diseases. This is causing some concern in HIV organizations as States have increased freedom to set public health priorities. There is a fear that the gains made in HIV prevention will be seen as achieved already, and that HIV prevention and education programmes will be scaled down.
There have been many lessons learned in the response to HIV/AIDS in Australia, and the most important is that the partnership between governments and communities is a dynamic one that needs nurturing and continued resourcing. This partnership is referred to constantly as the secret of Australia's successful HIV/AIDS response. There is a danger that the partnership sometimes becomes just a collection of sectors, each with different approaches, processes, priorities and contributions, rather than a dynamic relationship between these sectors. The partners need to be able to bring their respective contributions and perspectives without losing their essential identities. Community organizations are sometimes accused by their constituents for appearing to be 'in bed with government' or 'just another arm of bureaucracy'. They are also sometimes accused by government as representing the 'feral' community. It is important for community organizations to maintain their links with the communities they serve. It also important for governments to allow a level of disagreement and debate within the partnership without feeling that the partnership might threaten their existence.
It has been easy at times to take this partnership for granted, not to respect the individual contributions of its members and to attempt to make the partnership a homogenous entity. An example of the neglect of the needs of the partnership is the occasional misunderstanding of processes of community representation. Government often calls upon community organizations to provide a representative for a decision-making body. It often requires the name of the representative within a few days of the request. It has an expectation that the community organizations will dip into its ranks and pull out a suitably qualified representative. It becomes impatient when the community NGOs say that they have processes for appointing representatives, which involve calling for expressions of interest from affected communities and making a choice from the expressions of interest received. Government often states that it wants a representative who will behave 'reasonably' and not cause problems on the committee, and it sometimes names the person it would prefer. It is important that government understands the processes of the community sector and understands that community NGOs maintain their links with their communities by maintaining transparent and fair decision-making processes. Although this appears a reasonably trivial example, it is an indicator of the level of understanding needed of the difference between government and community, and of the level of autonomy that must be afforded members of the partnership.
Beyond this issue of the relations between the partners, there are a number of basic ideas that underpin good health promotion, learned from the Australian experience:
1. Campaigns are more than just posters and pamphlets. Since the beginning of the Australian AIDS response, NGOs produced campaigns made up of a complex set of elements such as printed resources, merchandizing, strategic community media placements, workshops, seminars, support groups, community outreach and other initiatives. The posters and pamphlets conveyed essential information, but also acted as symbols or reference points for the other elements of the campaigns. There has been a tendency at times to produce campaigns that are constituted only by posters and pamphlets and which lack the other community elements. There is a growing recognition that these streamlined campaigns have less impact than campaigns that include a set of elements aimed at several aspects of community life.
2. Targeting of campaigns is important. Campaigns aimed at members of affected and marginalized communities have often necessarily contained explicit images of sex between men or of injecting drugs. The effectiveness of the use of explicit materials has been clearly demonstrated. These campaigns, howver, are sometimes seen to cause problems if they become available to people outside the main target group, for example, when sexually explicit materials targeting gay men reach school-age young people. These situations can result in political incidents and challenge the stability of the partnership, as governments withdraw their support for a campaign in fear of a political backlash, irrespective of public health needs, and move into damage control. Incidents such as theses damage the working relationship between community NGOs and governments. These can generally be avoided by establishing agreed distribution policies and by community NGOs preparing detailed written briefs for each campaign.
3. Campaigns are best designed and delivered by members of the affected communities targeted. This has been referred to in the principles listed above, but has also been a key lesson learned. The wider the gap between the campaign developers and the target group the less likely that campaign will produce the required outcomes.
4. Shortcuts in campaign development and implementation reduce the quality of the campaign outcomes. In the haste to get campaigns 'on the streets', it is tempting to take short cuts in design and development or in the implementation of campaigns. The process of the development of a campaign is sometimes as beneficial to the target community as the campaign itself. There is much to be gained from the inclusion, debate and discussion that accompanies campaign development. Campaign issues often change as the campaign unfolds. Focus testing is important, as it is easy to miss the needs of the target community or confuse the message. An evaluation of the process of campaign development is sometimes as important as the evaluation of its impact. There is also little value in developing a wonderful campaign that does not actually reach target communities because of shortcuts in implementation. Communities need to be prepared for their participation in the campaign and given sufficient resources to participate.
5. Peer-based education is likely to be more effective than education developed and delivered by other 'external' agencies, especially in marginalized communities suspicious of government programs.
WHERE TO FROM HERE?
The AIDS response in Australia has developed over thirteen years. There have been many changes in the issues facing people with HIV/AIDS and people at risk, and the partnership has had to remain flexible and strong. The increased success of combination therapies has had a significant effect on the response. There is a temptation to feel that AIDS has been dealt with and no longer presents a threat. New generations in the affected communities have not had such a close association with HIV/AIDS and may see it as less relevant or not fear it as much. Other issues, such as high rates of sexually transmissible diseases in some communities, and the emergence of an epidemic of hepatitis C, present public health officials and government with new priorities. There is a chance that these priorities will dominate public health policy and funding, and that gains made over the last twelve years in HIV prevention and care might be jeopardized. The rate of new HIV infections in Australia has been stable at approximately five hundred per year for some time. If this rate is to be reduced, governments and communities will have to continue their work and find new ways to assist individuals and communities to avoid HIV transmission.
There are also broader changes in train that affect the relationship between governments and NGOs. The move towards smaller government and to the contracting out of health care services places NGOs in a different role with government. Competition is encouraged between NGO providers. It is possible that the long-standing, co-operative relationship between government and community organizations may be threatened by the emergence of new service providers, one-step removed from government but with no particular community connection. This is particularly a problem in health promotion and community development programmes that rely on connections with communities for their success.
There is also a tendency towards mainstreaming or integration of services and approaches. Although this has some merit at government and health service level, it is difficult to implement at community level. Community NGOs have relied on their success in mobilizing the energy and resources of affected communities. It is not clear that combining communities of people with HIV with people affected by hepatitis C (irrespective of possible overlap), for example, would be an effective model. Although there is much to be gained from the sharing of experience and expertise between these communities, combining them at community level may not always produce better health outcomes.
This case study has attempted to summarize the structure and functioning of the partnership response to AIDS in Australia. It has highlighted the lessons learned and the key tensions of the partnership between government and NGOs. The most difficult aspect of the partnership to portray is the nature of the relationships which make up the partnership. This is a partnership which requires continual nurturing, goodwill and commitment. Like all partnerships, it withers if it is taken for granted. The ongoing success of this partnership will be dependent on the desire of all parties to continue to participate, to work together and not to lose sight of each other's essential contribution.
Commonwealth of Australia 1989, National HIV/AIDS Strategy, A Policy Discussion Paper, Canberra, Australian Government Publishing Service.
Commonwealth of Australia 1993, National HIV/AIDS Strategy, 1993 - 1994 to 1995 - 1996, Canberra, Australian Government Publishing Service.
Commonwealth of Australia 1996, Partnerships in Practice - National HIV/AIDS Strategy 1996 - 1997 to 1998 - 1999, Canberra, Australian Government Publishing Service.
Dowsett, G.W. 1990, 'Reaching men who have sex with men in Australia. An overview of AIDS education: community intervention and community attachment strategies', Australian Journal of Social Issues, vol. 25, no. 3, pp. 186 - 295.
Dowsett, G.W. 1994, Sexual Contexts and Homosexually Active Men in Australia, Canberra, Commonwealth Department of Health and Human Services.
Kippax, S., Connell, R.W., Dowsett, G.W. and Crawford, J. 1993a, Sustaining Safe Sex: Gay Communities Respond to AIDS, London, Falmer Press.
Kippax, S., Crawford, J., Davis, M., Rodden, P. and Dowsett, G.W. 1993b, 'Sustaining safe sex: a longitudinal study of a sample of homosexual men', AIDS, vol. 7, pp. 257 - 63.
National Centre in HIV Epidemiology and Clinical Research, 1997 Annual Surveillance Report.