A History of Peer-Based Drug-User Groups in Australia

Summary

The active involvement of at-risk communities has been the hallmark of Australia's response to the AIDS epidemic, including community groups often supported by government funding. Organizations of injecting drug users (IDUs) at state and national levels have been key in providing input to policy, program development, and delivery, but their important contributions have so far been inadequately documented. We review here available information about the histories and impact of user groups, and report that their mere existence has had a profound effect on the nature of the response to HIV among IDUs, and their activities on the prevention of an epidemic among most sectors of the IDU community. After checkered careers and different evolutions, the greatest challenge now facing user groups is to sustain a relevant role in an atmosphere of developing complacency-that the epidemic is over-and that user groups are no longer useful to governments. The history of IDU organizations in Australia is not over, but their future is yet to be defined.

Introduction

Many of the features of Australia's fight against AIDS are unique and largely undocumented. To those working against AIDS in Australia, organizations of injecting drug users (IDUs) are part of the backdrop-they seem to have been permanent features of Australia's response to the epidemic. The acceptance they have gained in such a short time is a phenomenon worthy of attention. Drug-user organizations are not unique to Australia, nor did the concept originate there; but in some ways these groups have developed further in Australia than anywhere else.We attempt here to provide an historical framework of these groups and their development, hampered by the fact that little has been evaluated and less documented. Because of this lack of primary sources, this review cannot be a comprehensive appraisal, but it aims to provide a starting point for future, better qualified historians, and a reference point for others involved in the development of disempowered communities.

One of us (Crofts) has been a researcher on HIV among IDUs and a member of state and national policy committees since 1989; the other (Herkt) has been an active member of state and national IDU peer groups since their inception, and the founding editor of the national IDU peer journal, JunkMail, whose main function is documenting the existence of peer user groups in Australia.Both have inside knowledge of the history presented here, and have been participants in that history in different ways.Sources of information for this history have included: interviews with key informants, including long-time members of user groups; reviews of published and unpublished reviews and evaluations of user groups, including news columns from the five issues of JunkMail published between 1990 and 1993; the regular newsletters published by the state and territory groups; and a national needs assessment carried out for the Commonwealth government.

Background: Demons and Democracy

With the implementation of a national Community Health Program under the Whitlam administration in the early 1970s, a new element entered the realm of primary health care in Australia.Australia is a federation of eight states and territories, and this federal program developed differently in each state.Generally, however, local community health projects were directly accountable to the communities they served, with local boards of management which were elected from the consumers of the service.There was community involvement at virtually all levels of the service, which promoted responsiveness of the service to the needs of the community.For a time, the leading edge of primary care moved away from a curative to a community-development model. Through this time, too, allied movements grew in the lush soil that the community health movement had fertilized; movements such as: consumer representation in institutional structures which until then had been the province of the professions and the bureaucrats; hospital boards of management; professional structures such as medical boards and expert governmental advisory committees; consumer action movements, such as Billboard Graffitists Against Unhealthy Products, and the Movement Opposing the Promotion of Unhealthy Products; a new generation of consumer organizations, such as the Council of Self-Help Groups; and new mechanisms to increase the accountability of professions and institutions, such as the Health Issues Center.

Much of the vitality of the original community health movement in Australia has dissipated but it has left several legacies.Processes of empowerment and involvement of consumers in service provision have meant that sections of the community have a sense of their rights and responsibilities, along with the experience of having been part of the process of creating a healthy community.Likewise, a generation of politicians and bureaucrats has been at least sensitized to the role of the affected community in the planning and implementation of services; some more than others.In many cases, bureaucrats had their world view irrevocably changed by the community health movement, and many met and talked to consumers for the first time, bringing about changes in their attitudes that have remained. Channels of communication were opened up between service providers, bureaucrats, and consumers in a wide range of health areas- disability, mental illness, unemployment, poverty. Working models were established in all these and other areas. The course of public health, in academia and in practice, was also irrevocably changed, with movement away from top-down service delivery models toward grassroots community development models. This was the environment in which Australia's first response to AIDS was to develop.

The response of the gay community in Australia to AIDS, with extremely effective self- organization, real involvement in the development of policy in partnership with the bureaucracy and the medical and scientific communities, owes much to this community health legacy. That IDUs were one of the last groups in Australian society to respond to the community development model was perhaps a reflection of the degree to which they had been disenfranchised by the prevailing ethos of demonization of drug use. However, IDU self-help groups had existed for some time before the perception of the threat of AIDS among IDUs (e.g., a Self-Help and Substance Use group formed in 1986 around preexisting self-help groups), whose agendas related to personal drug use issues. Around the time AIDS was beginning to be seen as an issue affecting IDUs in Australia, in 1986- 87, there were burgeoning political aspects to some of these groups; e.g., the Users' Union in Victoria evolved from the Self-Health and Substance Use group whose agenda was drug policy reform including decriminalization of heroin use. These groups were influenced by what IDUs had seen in their travels, especially the junkiebonden in Amsterdam. Australia's National Campaign Against Drug Abuse, introduced in 1985, was initially a very high profile War On Drugs type of campaign, with illicit drugs as its central focus. Several media campaigns of the demonizing variety, including a national mailing to every Australian household about the War on Drugs, ensued before the emphasis was radically changed in 1988. In that year, the National Campaign (renamed the National Drug Strategy in 1992) refocused its attention away from illicit drugs toward alcohol and tobacco, in recognition of the fact that these two substances are responsible for the vast majority of drug-related harm in Australia. It also adopted a policy of "harm reduction," making Australia the first country in the world to include this phrase in its national drug policy. Despite this, the National Drug Strategy is still struggling toward a community development model, in large part being dragged by the forces involved in the response to AIDS.

AIDS and HIV infection are now large scale phenomena in Australia only among gay men, including gay men who inject drugs. Of 5,075 people reported as having been diagnosed with AIDS to the end of June 1994, 307 (6.1 %) had a history of injecting drug use, but 64.5 % (N=198) were men who also had a history of male homosexual contact. Of 18,274 people who have tested HIV positive at the same time, only 5.1% (N=935) reported a history of IDU, but 35.8% (N=225) of those also gave a history of homosexual conduct. The seroprevalence of HIV in most studies of IDUs in Australia other than gay men who inject has been stable at less than 5 %, often much less than this (Kaldor et al. 1993). On the other hand, prevalence of hepatitis C among Australian IDUs is of the order of 60-70%, with incidences of between 15 and 40% per annum recorded in different population studies to date (Crofts et al. 1993; Crofts et al. 1994).

A Watershed: The Australian National HIV/AIDS Strategy, August 1989

Through 1988-89, the Australian Federal Government went through a process of consultation with interested stakeholders toward the development of a bipartisan, 3-year National AIDS Strategy (Commonwealth Department of Health 1990). The inclusion of a drug-user representative on the advisory committee that developed the strategy was an early indication of its emphases. Consultations were arranged state by state and they involved representatives of drug-using groups, which by then were starting to achieve organizational prominence and an effective voice of their own. This process was very strongly influenced by the tripartite approach which had been developed in response to AIDS in Australia. Its central theme was that no effective policies could be implemented by the government and medico-scientific community without the close and direct involvement of at-risk groups, themselves.

In relation to HIV infection and IDUs, the National AIDS Strategy was firmly rooted in this prevailing ethos. The strategy advocated a community-based context for programs in relation to the gay and user communities, and with regard to IDU, it was based on harm- reduction principles. It advocated needle distribution and disposal systems in all states and territories, with accompanying legal changes to facilitate the development and operation of needle-exchange programs. The basis of education strategies was to be community- specific targeting, even where this contravened general community standards; peer education was given the highest priority, with members of the target groups involved in the preparation and delivery of programs. There was a clear recognition in this strategy that active drug users can form, manage, and staff viable organizations, which came from an open community consultation process fostered by key bureaucrats in the Commonwealth Department of Health. Members of the committee which ran the hearings in each state and territory included a senior politician outspoken in favor of drug policy reform, and a coordinator of one of Australia's first peer-based needle exchanges. Further, this national strategy recommended funding for such organizations at both the state and national levels.

Much of this strategy was simply recognizing and legitimating organizations which were already in existence. It also gave coherence and federal support to what had become an uncoordinated and patchy process. While the National AIDS Strategy did not create user organizations per se, it facilitated their emergency by creating a pragmatic infrastructure of cooperation on the part of other state and national organizations.

In addition, the strategy also redefined the relationship between government and IDUs, both in a formal and informal manner. Drug users were perceived by this strategy to be individuals with a capacity to educate and be educated, to form organizations, to manage funding, to represent their community, to serve on governmental consultative committees, and employable in a variety of roles as drug users. This perception, necessitated by the fundamental commitment to community involvement and the redefinition of drug users (given the community's long history of alienation), was the basis for the success of the Australian National AIDS Strategy.

The Establishment of User Groups in Australia

a. The Victorian Intravenous AIDS Group (VIVAIDS)
b. New South Wales Users and AIDS Association (NUAA)
c. Queensland IV AIDS Association (QuIVAA)
d. Australian Capital Territory IV League (ACTIV League)
e. South Australia Voice for Intravenous Equity (SAVIVE)
f. Northern Territory Users Forum (TUF)
g. Tasmanian Users Community AIDS Advocacy (TUCAA)
h. Western Australia IV Equity (WAIVE)
i. Australian IV League (AIVL)

The establishment of user groups in Australia did not come about simply because the National AIDS Strategy recommended them. User groups evolved differently in different states and territories in the pragmatic climate created by the National AIDS Strategy. The success of gay organizations, which also predated the AIDS epidemic, provided a model and a stimulus for the formation of peer based organizations as a focus for the fight against AIDS. However, the codification of this peer-based model for IDUs in the national and state strategies required action from the entire range of governmental organizations with regard to peer-based user groups.

Because the development of user organizations varied so widely in different conditions, it is necessary to examine their development separately. In many cases, there is an intertwining between the development of user groups and the development of needle exchanges in Australia, though the two are by no means synonymous. The relationship between HIV/AIDS issues and issues of discrimination, advocacy, human rights, and support were a fundamental dynamic in the formation and functioning of user groups. The various user groups described here illustrate a spectrum of styles, with variations in their approach to management, group aims, and constituent memberships, not only among groups in the different states, but also within any given group over time. These differences can be located along a major spectrum of approaches to community development of any disenfranchised group, from the more authoritarian functional, through the democratic, to the anarchic. The differences between the groups were both cause and effect of a range of variables, some were external to the group and rooted in government policy (such as funding, contracted functions, and management style) whereas others were within the group, such as involvement of volunteers, specific aims, day-to-day management, and membership socio-demographics including acceptance of both non-IDU and IDU members and staff.

a. The Victorian Intravenous AIDS Group (VIVAIDS)

VIVAIDS evolved from a background of a number of user self-help groups in Victoria through 1987 and 1988, operating under self-help philosophies and, where available, Community Health funding. These groups included the Users Union and the Coalition for Drug Justice, formed through 1986-87, and a variety of medical self-help groups. A peer group formed around one IDU, who had contracted HIV infection through his drug use, to found VIVAIDS in August 1987. It involved a broad group of about 30 users and others, both HIV positive and negative, and concerned service providers (particularly drug and alcohol workers) and a staff member from the state health department's AIDS/STD unit. Seven weeks after the organization's inception it received a first formal grant of $54,000 from the newly-formed AIDS/STD unit of the Victorian Health Department; the funding came from the state's Drug Research and Rehabilitation Fund, which itself is funded by the seizure of assets of convicted drug traffickers, which would normally have funded police activities. With this grant, VIVAIDS opened the state's first peer-based needle exchange in an inner suburban location, near a large housing project, central to one of the two main high-profile using areas in Melbourne.

The philosophy of needle exchange in Australia separates needle distribution and disposal: the supply of new equipment does not depend on the return of old equipment, nor are the numbers of syringes limited in any way to clients of the exchange. Needle exchange has been seen as central but not the sole activity of exchange projects since they routinely provide a wide variety of other services, depending on their location.

The focus of the initial VIVAIDS group, in which most of its members had been directly affected by HIV/AIDS in some way, was to curb the epidemic. The establishment of a needle exchange changed this involvement by providing a free service which was of relevance to all users. This provided an impetus for users to come in contact with the organization, and the membership grew substantially through this process. The presence of Victoria's first needle exchange in the context of a peer-based group helped to establish and legitimize both initiatives, user-groups and needle exchanges. This particular linkage (which also occurred with regard to sex workers) helped the swift development of other needle exchanges in Victoria and their use by IDUs. Needle exchanges also serve as vital recruitment mechanisms for peer-based user groups.

From its founding constitution, VIVAIDS' primary aims were to reduce the spread of HIV among IDUs, and to assist IDUs infected with the virus. Other aims included enabling and encouraging self-organization among IDUs, ensuring that user organizations are controlled by IDUs and represent their views, and working to reduce the stigma attached to IDUs by all available means, including assisting and promoting research projects. The group's initial concerns were educational; early in the epidemic there had been no national or local organized education for IDUs about HIV/AIDS, and the group thus saw its primary focus as providing and disseminating prevention information, and assisting in the development of effective informational materials and resources.

At its peak, VIVAIDS was an incorporated organization with a membership of several hundred, and was servicing 300-500 individuals per month. The membership elected office-bearers at an annual general meeting to form a management committee of six to nine people. The committee was responsible for employment and supervision of workers, who included a coordinator, a needle exchange worker, a peer educator, and workers on funded short-term projects. Management committee members included, as well as peers, nonuser members such as doctors, HIV/AIDS workers, state health department bureaucrats and other service providers.

To the majority of users, VIVAIDS was its public face. This meant that those workers employed by the organization represented it. During the first 4 years of its existence the workers were, without exception, publicly-acknowledged active users, and all educational initiatives whether to users or nonusers were conducted on this basis. By 1990, the exchange coordinator, the needle exchange worker, the peer educator, and the administration assistants were all users who were part of Melbourne's user community. However, in 1990, the organization lost its health department funding because of misappropriation of funds by a part-time staff member who was the group's accountant. The health department oversaw the dismemberment of the group in response to a perceived threat of public exposure of the governmental funding of IDU groups. However, in the 6-month interregnum between the misappropriation and the group's dissolution, when the group was managed and staffed entirely by active users, the project saw more clients than during any other period of its history.

The shopfront which had been VIVAIDS' home continued as the Inner Melbourne needle exchange, and the program is now sponsored by a local community health center. In the first month of this new sponsorship, client attendance declined and the growth rate of the agency has never recovered or equaled the prechangeover rate. VIVAIDS provides a good example of the differences between a peer-based group and a nonpeer-based group.

As a needle exchange, VIVAIDS was highly successful, with approximately 1,500 users registered and an average distribution from each of them to another 4 or 5 people. The spectrum of users reached was wide, including gay IDUs, who have not been well catered to in this community by the existing gay organizations.

As a user group, however, VIVAIDS was less successful. For the 3 years that VIVAIDS was under peer control, the volunteer management committee (which included nonuser members) suffered a high rate of attrition. In each of the years from 1987 to 1991, six to eight members of the management committee elected at the annual meeting resigned or were discharged before the succeeding meeting. This high turnover was a consequence of the demands placed upon the volunteer management group members. To establish and maintain a user organization whose mission is far in excess of its limited resources is a tremendous undertaking, but to do so in a volunteer capacity necessarily demanded a great deal of dedication. The task of the management committee was all the more daunting because no previous structures of organization and representation had existed in the drug- using community before: each development was an innovation, as there were no model processes or protocols. Peer-based IDU groups had to create formal structures, including those of democratic representation, for a stigmatized community whose existence had previously been entirely informal, and to work these structures into governance processes in the greater community. VIVAIDS' experience exemplifies the requirement that the role of the funding agency does not end simply with funding, but must include responsibility for continuing support to ensure that the group develops in accord with the initial funding intention. This role should be seen as nurturing as well as overseeing.

The problems of VIVAIDS are alleged by some to be the result of personality and psychological disorders of the group's members, and dysfunctional social abilities-in short, by their use of drugs. But the formation of VIVAIDS was a major step in the HIV/AIDS response in Australia. By the simple development of a user group, formal structures began to be established between Melbourne's drug using communities, various professional and service groups, and the state. In effect, the creation of VIVAIDS as an incorporated organization, with a membership, an elected management, and a constitution, meant that notorious user communities had a public and legal face. With funding, an office and a phone, and obligations to other organizations, the net result was that anyone, including a health bureaucrat, could pick up a phone and contact a paid worker employed and responsible to a representative body of the illicit drug using community of Melbourne. This ability to contact IDUs was utilized by researchers for several well known projects, and by workers developing educational materials. It was also extensively utilized by a range of organizations, including educational institutions, and drug and alcohol agencies, for a range of activities beyond HIV/AIDS education.

In essence, by the establishment of VIVAIDS, the using community in Victoria had come in from the cold. However, its temporary failure, and the reasons for it, reveal just how fragile a drug-using organization can be. Since the defunding of the organization, and the user community's sense of having been abandoned because of their first mistake, the relationship between the state and user groups has become tenuous at best. The unwillingness of state health organizations to stand by their principles through expected teething problems, and the continued refusal to reinvolve users in the areas that concern them, has led to an impasse. The state of Victoria is now behind much of the rest of Australia in the development of more refined HIV/AIDs prevention strategies. VIVAIDS continues to exist, unfunded, but with hopes of a return of government sponsorship in the near future.

b. New South Wales Users and AIDS Association (NUAA)

An AIDS and Drug Information Collective was formed in 1987 by a group of IDUs, ex- users, and various health workers, as a lobby group to pressure the New South Wales state government for funding to set up an educational organization for IDUs. This group was influenced to a large degree by "secret users" working within the state government who were privy to information on HIV/AIDS and the effects it would have on their community, and who subsequently became open in their support of peer-based education groups.

Initially unsuccessful, it received funding in 1988 from the AIDS bureau of the state's health department for an interim committee to set up the structure for an incorporated association of IDUs. Members of the interim committee leafleted the Kings Cross/Darlinghurst area, an inner urban focus for both "street" drug users, sex workers, and the Sydney gay community-an area that has the highest incidence of AIDS in Australia-calling for a series of general meetings to discuss the structure and roles of the proposed user group. These meetings attracted 20 to 30 people each. At an early meeting, a management committee made up of current and ex-IDUs was elected and set about drafting aims and objectives and a constitution.

In 1989, the interim committee sought funding under the sponsorship of the Alcohol and Drug Services of St. Vincent's Hospital, Darlinghurst, and on receipt of funding formed the New South Wales Users and AIDS Association (NUAA) from members of the AIDS and Drug Information Collective and another user group, Injector Services. A coordinator and an administrator were appointed, and office space was provided in a methadone clinic and needle exchange operated by St. Vincent's Hospital. During the first few months of operation, staff and volunteers became more engaged in service provision, including needle and condom distribution, peer education and outreach, and crisis management. During this period the statewide HIV education focus began to wane.

In early 1989, NUAA found new premises in a former brothel above a nightclub in Kings Cross. This site was also largely service oriented, especially for homeless and transient users, with a drop-in center, showers, laundry, storage facilities, and a day room with television and radio. The roles of education and needle exchange were expanded with the appointment of more staff and volunteers. IDUs were actively involved in all levels of the organization, as members of the board of management, as relief staff in the needle exchange, and in assisting in the production of a newsletter.

The role of the organization in the heart of the main Sydney drug-using district was dominated by day-to-day crisis management. The exchange played an integral role in the area's using communities and was seen and recognized by users as crucially relevant to their needs. The development and organization of Badlands, a residential harm-reduction service, was a direct result of this approach. Badlands was a large residential complex with free accommodation available for 10 clients at any one time with 24-hour services. It was available for those users and sex workers with, or at risk from, HIV/AIDS who required accommodation and allied services. It was the first agency of its kind in Australia and broke new ground. However, it was NUAA's service role which came under increasing fire. The crisis management of day-to-day service provision was perceived as playing little or no role in HIV/AIDS prevention. The tension between the needs of the user community and the requirements of HIV/AIDS funding was a problem encountered by many user groups in Australia, but NUAA represents the most dramatic form the conflict has taken.

By late 1990, concern was also mounting that NUAA was serving only users in the Kings Cross area and neglecting users in general around the state. The debate about how NUAA might best fulfill its original function was carried on between staff and the funding body. The prevailing attitude in this debate, which was held by many in the organization including current IDUs, was that NUAA could best improve prevention of HIV among users statewide if it gained acceptance from governmental agencies and was included in the policy process. An independent consultant recommended a new structure and plan, which involved a move away from individual service provision toward: statewide education of IDUs about safer drug use and sex; advocacy to government departments and service providers against discriminatory policies; improvements in health status of IDUs, and needle exchange and referral services. With the adoption of this revised approach, NUAA moved physically to Bondi Junction, two subway stops from Kings Cross, in a former architect's office. The change in location altered the entire atmosphere of the agency, which no longer had drop-in facilities or offered crisis help. It also caused problems in the Kings Cross community and among NUAA staff, management committee, and members.

Separation from a community in which the group had become integrated, and to which they were committed, felt like abandonment to some. However, the funding basis for the organization, its aims and objectives, and the necessity to fulfill these and focus on the wider IDU community, was strengthened. The move decreased the level of direct user involvement with NUAA. Street IDUs now seldom travel to the new premises, and when they do, they are not inclined to stay. Although still operating a needle exchange, the service is no longer an important part of the agency's function. Crisis intervention is not offered, and such clients are referred to other agencies. The management committee was changed substantially, with the replacement of street IDUs by recreational and exIDUs. Volunteers are no longer encouraged, as staff feel that volunteers in the past had not been provided with significant skills development. Moreover, there is now minimal involvement of IDUs in the production of newsletters and research, and there continue to be problems in establishing an HIV positive users' support group. Thus, NUAA has been accused of losing touch with its constituency street users-but it sees itself as having developed a wider constituency-IDUs statewide.

Instead of dealing with day-to-day needs of users, the group now has a role with regard to state and community organizations which deal with IDUs. By intersecting with these groups, gaining positions on relevant committees, and providing information and resources, NUAA's work with IDUs is believed to be much more economical. By working with a government committee on methadone, for example, the lives of all users in the state are beneficially affected, far more so than could ever have been achieved with crisis intervention. This shift in NUAA's resources and skills has begun to effect change within the state in ways that could not have been achieved by a shopfront organization, but it comes at the expense of a diminished relationship with that community, and with a more paternalistic orientation toward IDUs.

c. Queensland IV AIDS Association (QuIVAA)

As a consequence of the National AIDS Strategy, drug and alcohol workers in Queensland suggested the formation of a user group to prevent the spread of HIV among IDUs. Thus, a state regarded as Australia's most conservative and parochial, QuIVAA was formed at the initiative of government workers in association with users known to them. Formed in 1988, the group received funding through the Commonwealth AIDS Prevention and Education grants scheme to support the educational programs. At that time, possession of needles without a physician's prescription was illegal in Queensland, and an early priority was lobbying for change in this legislation. QuIVAA received its first funding in December 1988 with a management committee formed by and around the AIDS branch of the state health department, in conjunction with users known to the branch. A drop-in center was opened, and educational activities begun, which attracted about 30 members to carry out peer education, particularly among IDUs in treatment.

Needle exchange programs in Queensland had begun prior to QuIVAA's founding, and because of this the group originally had difficulty in attracting membership. The group focused on outreach and prevention education, particularly targeting recreational IDUs; e.g., Project Nocturne was an outreach project to IDUs who frequented nightclubs. The project, highlighting QuIVAA's existence, increased its membership to about 130 within 6 months. By 1991, QuIVAA's funding had grown to $137,000 annually, and the membership had grown to 220.

QuIVAA was the first user state group in Australia to become actively involved in the establishment of other local groups, and to represent and service other users in the state. With the aid of Commonwealth government funding, a QuIVAA worker was based on the Gold Coast and the Sunshine Coast of Queensland. By contacting local users and health organizations two other user groups were created: the Sunshine Coast Intravenous Drug Use and AIDS Association, and the Gold Coast AIDS and Injectors Network, both of which are still viable agencies.

QuIVAA began its own needle exchange in 1991. The development of the exchange was to increase membership but two relocations of the agency have lost any gains that were made. QuIVAA was also the first user group in Australia specifically to target IDUs who were gay or were men who had sex with men. This latter was the one group of IDUs in Australia who had received no direct support due to the bias against them exhibited by the gay-dominated state AIDS councils. The project tailored information to IDUs' particular needs, and developed a product giveaway program (toiletries, etc.) that was accompanied by safer injection/sex equipment and information.

QuIVAA is now funded at a high level and its projects remain targeted at users. QuIVAA developed slowly, but it has close links with other health organizations. This linkage has created problems and the relationship with the user communities of Queensland remains problematic. With regard to control, the agency has seesawed between the extremes of health organization and the user community, and these swings have not yet permitted the growth of the agency philosophy that could be expected from such a large and continuously funded group.

d. Australian Capital Territory IV League (ACTIV League)

An IDU group in Australia's Capital Territory was initially formed as a humanitarian charity by a religious group, and it developed into a multigroup agency with the appearance of HIV/AIDS. This beginning meant that the user group developed from a paternalistic, charity orientation, which is as much devoted to administering welfare as it is concerned with combating HIV/AIDS.

The Australian Capital Territory IV League received its first funding in 1988, and in 1989 employed a part-time coordinator. By 1990, three staff were employed: a welfare officer, a project officer, and half-time administrative support. Although AIDS has been an issue for ACTIV, and the agency has maintained a needle exchange since 1990, other consumer issues, especially welfare services, has received equal attention. Also, the initial location of ACTIV at the state's AIDS Council embroiled it in many other problems: an overfocus on gay issues; fear of AIDS; homophobia: the lack of a smoking area; and the inability to use the council as a drop-in area. These factors forced the organization to relocate to independent premises.

ACTIV's independence in the AIDS arena, however, was not equaled by its independence from the welfare-based support of its parent agency. ACTIV services are eagerly used by users eligible for various welfare benefits, and its state support means that users can even attend user-group meetings and obtain welfare money for cigarettes and bus fares. The league also offers regular lunches for user mothers with a nurse in attendance. However, despite other welfarebased initiatives, including a proposed project where a large number of users may receive legal heroin in a research trial, ACTIV has not developed any effective representative or liaison function with regard to the user community. Users are not encouraged to participate in management of the group or its parent agency. Any representation of the user community, including nationally, is conducted by the workers of the agency, and the user community in the Capital Territory remain without voice or role to play in the agency that speaks for them.

e. South Australia Voice for Intravenous Equity (SAVIVE)

A user group called the IV League of South Australia was organized in 1988 with no constitution or formal membership. By 1990, the failure of the group to achieve more than nominal existence led to the involvement of the state's AIDS Council, and one of its members, drawing on the experience of VIVAIDS and NUAA, applied for funding for a part-time worker to complete an action research project. In September, this funding became available, and a needs assessment of users in South Australia was conducted. And a year later, SAVIVE was formed. Though still based at the state's AIDS Council in Adelaide, the group began to develop its own identity and, with the operation of a needle exchange, it began to accrue a membership. SAVIVE, with its integration of IDU services in the state's AIDS Council, represents an ideal situation which exists in only two other Australian states. The group is integrated into the AIDS Council, which manages their employees, oversees its projects, and administers its funding. Politically, users have a voice in this structure and in the ongoing management of the group. The involvement of the state's AIDS Council has not hindered this process to any degree and it is of interest to note that users have been integrated into the political mechanisms of the AIDS Council itself.

SAVIVE has achieved signal success with its peer-based needle exchange since it boasts the largest client attendance and distribution numbers of any exchange in the state. In addition to needle exchange, SAVIVE has also been the sponsoring body for the first HIV/AIDS program devoted to IDUs of aboriginal descent. Given the relationship of this target group to its own, SAVIVE marks a significant step in the development of preventative education by applying lessons learned in related areas (with regard to IDU and Aboriginal/Torres Strait Islanders) to create viable projects for groups who are difficult to access. By employing workers of aboriginal descent who have experience in injecting drug use, a peer-education framework has proven to be especially effective. These workers have indigenous access and credibility which enables them to reach members of the target group virtually inaccessible to outsiders. The group has a core staff of two or three outreach workers and additional project employees.

SAVIVE represents the successful integration of an IDU group into a larger HIV/AIDS organization. The role of the group is clear within this structure; it has also operated paternalistically with a nonusing worker employed to oversee all user workers. However, by this clarity and organized process, the group has limited itself to an HIV/AIDS focus. While this is the stated purpose of SAVIVE, the relationship of such groups to other IDU issues (crisis management, representation, welfare, government liaison, etc.) has proved important to a number of other user organizations. SAVIVE clearly represents a peer- based user group with an HIV/AIDS function which does not involve itself in other issues.

f. Northern Territory Users Forum (TUF)

TUF was formed in 1989-90 fostered by a worker at the state's AIDS Council who was an acknowledged HIV positive IDU. The Northern Territory is a conservative state, with a small population and a government that possesses the benefits and disadvantages of all small population-based governments. The state's conservative government has not prioritized HIV/AIDS and the issues involved with regard to it and injecting drug use are of little importance to the government as a whole. Within this context, TUF has had a tentative existence, but because of the limited local funding, the group has received support from the federal government.

The state's AIDS Council itself reflects the territory's bias with regard to injecting drug use as problematic, and the group has suffered because of it. The group operates the only needle exchange in Darwin but due to the problems with local police, users have a mixed response to the exchange. However, TUF has provided a forum for the expression of IDU issues and involvement of IDUs. In the territory, given its prevailing ethos, this has an importance that should not be underestimated.

The employment of a community development worker helped organize TUF and another user group in Alice Springs. The community worker proved to be invaluable in raising a number of IDU concerns to the population of the territory as a whole, and working with health and other relevant organizations to enable IDUs to receive the services they require. The community worker also interconnects with other Commonwealth projects, and has traveled throughout the Northern Territories to involve the user group and relevant organizations in the larger HIV/AIDS community.

TUF has never received any direct funding, but has received some in-kind help from the state's AIDS Council with whom it operates the needle exchange program. Fear of breaches of confidentiality due to the territory's police powers and small population has limited TUF's core and official membership. However, despite this problem, the group still exists, and provides a space where IDU issues can be raised and examined in a larger context. TUF has also established clear links with Alice Springs and established a branch there. This group is focused around a rural-based needle exchange. The exchange services a large number of users and reaches a large part of central Australia. It also provides the basis for IDU initiatives in Alice Springs.

Given the limited resources of TUF, it may be observed that the group, because of the small population of the state, is a recognized force with media attention and direct access to relevant ministers, not withstanding their lack of support.

g. Tasmanian Users Community AIDS Advocacy (TUCAA)

Largely because of the conservatism of this small island state, and fears regarding lack of confidentiality, TUCAA has never been more than a small formal organization, revolving around five or six committed members and a worker in the state's AIDS Council. Official policy denied the existence of injecting drug use in Tasmania for many years, and homosexuality remains illegal-the only state in Australia where this is the case. Needle exchange programs are only now being established legally, though an illegal exchange has been operating for some years.

The group has been fostered by the state's AIDS Council which had previously been a center of gay rights activism. This fostering has enabled the group to survive against the prevailing hostility of the state government, but it also has meant that the group has been divorced from the largely underground Tasmanian user communities. Due to Tasmania's own opium poppy crop, drug use in the state takes specific forms not tied to economic drug distribution networks. There has also been no tradition of methadone or palatable drug treatment, so there has been little need for users to come in contact with official organizations. TUCAA has established an organizational basis, but given the fact that it could not offer a needle exchange until only recently, or offer any services other than information, a rather tenuous relationship has resulted between the group and user communities on the island.

h. Western Australia IV Equity (WAIVE)

In 1988, several members of a group called the IV Drug Initiatives Group were either employed by, or on the board of, the state AIDS Council of Western Australia. Initial development of the user group was hampered by the police arrest of an employee on drug charges working on the needle exchange bus, which was funded by the state's AIDS Council. Though no conviction resulted, the arrest set back the development of IDU groups in the state in the form of funding support from the state's HIV/AIDS agencies.

WAIVE was formed under impetus from the state's AIDS Council, but never funded. Thus, it has existed more on paper than in reality. There have been many interested users at various times, but the group's history has been checkered with power plays and disagreements, and ultimate failure of representation. Representatives of user groups from other states have attempted to intervene in group affairs, but to no avail. WAIVE ceased to meet as a group in 1992. The group's role with regard to the representation and consultation with other agencies has been taken by outreach needle exchange workers from the state's AIDS Council.

With the exception of Western Australia, the Australian states are relatively homogenous with regard to their drug using cultures. In contrast, the major opiate drug used in Western Australia is "homebake," a drug made by converting over the-counter codeine preparations into morphine and heroin. This simple process takes four easily obtained chemicals and can be conducted in an ordinary kitchen. The resulting product is a liquid. Thus, the opiate-using community has totally differing HIV/AIDS risks because "homebake" is sold in either prepacked syringe-fulls or is taken from a larger bottle by drawing the fluid into a syringe. The opiate-using community also has a totally different social structure from that found in other Australian states with the majority of opiate users situated in small discrete social groups which only manufacture enough "bake" for themselves, and are centered around a baker with individuals given assigned roles as assistants, or as purchasers of the large amount of codeine preparations required. The high hepatitis C rate in Western Australia can be seen as a consequence of "homebake" use. Therefore, an organizational structure which suited other states with their large using communities, and where economic and social structures were unbounded, was doomed to failure in Western Australia when the attempt was made to impose it upon the small discrete social groups found in the region.

Coupled with the failure of the local health organizations to offer seed funding or any support, WAIVE has been one failure in the Australian experience of user groups. This history demonstrates the necessity for organizational structures that reflect local conditions, an effective and knowledgeable midwife role, as well as the need for the involvement of local health organizations in the process. The creation of formal representation of a community in which no formal structures have existed previously is a process that cannot be imposed from without. This is the lesson of the Western Australian experience for Australian user groups.

i. Australian IV League (AIVL)

The Australian IV League is a national umbrella organization which, in line with the Australian Federation of AIDS Organizations, was developed for the state peer-based user groups as the direct result of the National HIV/AIDS policy. Its existence was required by the organization set in place in 1988. The IV League had its first informal "bootstrap" meeting at the Hobart National AIDS Conference in 1988. Delegates from all states who were attending that meeting, and who were considered to have an interest in IDU issues, were gathered together.

Working closely with Australian Federation of AIDS Organizations, the IV League quickly established its basic constitution and structure. Each state has two delegates, gained from the largest user group in that state. A 5-person executive committee is elected from the 16 delegates. The process of establishing the group's aims and objectives was facilitated by funding from Federation of AIDS Organizations and the Commonwealth which allowed for delegates to be flown from each state to a central location for two face- to-face meetings. By 1989, the IV League began to send delegates to all relevant meetings in the nation. Through this involvement, it now has a voice in all national decisions involving the larger HIV/AIDS community.

Funding for the group was gained through the submission of a number of projects to the Commonwealth. Support was pooled and two workers were employed who, in addition to conducting the contracted projects, also performed core work for the organization. For example, in 1990, the group had several projects including the development of a comprehensive, 60-page, pocket-size book entitled Handy Hints which covered all aspects of safer use and HIV prevention; the establishment of a newsletter journal, JunkMail; and conducting a national needs assessment. These projects were integrated into the aims of the group, which facilitated the IV League's establishment and credentialing. Handy Hints was a major success and has been revised and reprinted twice. JunkMail became a larger journal (the last issue numbered 90 pages) which is devoted to all aspects of injection drug use and HIV/AIDS prevention in Australia.

In addition, the two employed workers based in Melbourne and Sydney began integrating the group into the larger Australian HIV/AlDs community by representation on committees, advisory bodies, and so on. The group itself was fully informed of all issues, and the role and obligations of each IV League delegate were articulated. Each state is free to choose its own delegates without the IV League's intervention. This selection process, however, has caused problems for the organization as the structure (or lack thereof) of some state groups has allowed individuals to appoint themselves, whereas in other states the delegates are appointed by a membership vote. Thus, the power balance of the organization fell into long-serving members from groups that had little or no IDU input or representation. Further, some delegates did not involve or represent a state group. All state involvement was voluntary and no state organization was funded for its participation. Initially, these were minor problems given the firm staff backing, clear vision, and orderly manner in which the group made decisions and required involvement.

However, in 1991, the projects begun by the IV League were less related to its initial aims and objectives, and, with the natural attrition of staff and changing agenda, the group changed internally and new options were considered. In 1992, the group's headquarters moved from Melbourne to Canberra, the nation's capital. This placed it in close proximity with other national organizations, but relying on the Commonwealth for core funding presented problems for the group. Although in 1992, a project worker could continue de facto core operation, all core work had devolved onto the executive committee. This group seldom fed back information and decisions to its constituency, due in some measure to the lack of clerical and operations staff, and the organization began to fragment. While the group could still meet once or twice a year at a cost of some $20,000, the face-to face meetings were not followed by ongoing work and consultation.

The group was also controlled by members who were self-appointed delegates, and their role was quite different from those members who came from groups bearing a clear role as a representative to interconnect with relevant organizations. The last round of projects granted to IV League included a national HIV/AIDS education program for service providers, a reissue of Handy Hints, new issues of JunkMail, a syringe vending machine feasibility project, and several pamphlet and information campaigns. The group then petitioned Commonwealth bodies for funding. But no funding has yet resulted.

Since April 1993, the IV League has been moribund, notwithstanding its clearly designed role in the Australian HIV/AIDS experience. The occasional funding that is obtained is utilized for the expensive annual meetings, but without backup and implementation these meetings cannot answer the needs of the League or the IDU communities. No redevelopment of the representative structure has been taken. Nor has there been development of increased communication from the IDU groups to the League. Following the last issue of JunkMail in 1993, the league has had little or no impact on IDUs or services for drug users.

However, the Second National Strategy on HIV/AlDs was released in October 1993, and this strategy insists on accountability and representation by the IV League. The negotiations for funding continue but, with changes in the funding schemes, a return to the old process of project funding is now impossible. Given the changes in HIV/AlDs prevention, complacency, and new challenges such as hepatitis C, the presence of an active user group in the national arena is still apparent.

Discussion

In Australia, IDUs have organized and, from that, they now successfully run a wide variety of programs themselves. IDUs have had a real and often dominant influence on the development of policy in relation to harm reduction. User groups have run needle distribution and exchange programs that are among the best in the country; they have produced the most imaginative and appropriate educational material in this field; they have initiated and actively participated in research; they have provided structured access to informants for policy and program development; and have been active partners in this development. In general, this has been done with minimal funding and support, and often in an unsympathetic if not hostile environment. User groups have been agents of social change who have altered the landscape in relation to every aspect of our perception of injecting drug use in Australia.

Yet, in many ways these achievements have gone unrecognized. Much has been taken for granted and, because of this, user groups in Australia have rarely undergone systematic evaluation, and few of the lessons learned have been documented. This is also the case for needle exchanges in Australia: with nearly a 7-year history, with hundreds of outlets for a total population of 17 million, and with millions of needles and syringes distributed each year, very few publications related to needle exchange in Australia have been published in international journals.

User groups have also not been without their problems. As this review has emphasized, however, the majority of these problems are familiar to anyone who has worked with community development of any disenfranchised group, rather than being unique to IDUs. In examining the history and functioning of user groups, the fact that drugs are involved has continually blinded government leaders and concerned citizens from seeing the humanity of users, and the considerable civic responsibility and work they have successfully carried out.

One major tension, common to community development projects across a wide spectrum, and clearly fundamental to the history of user groups in Australia, is the tension between the funding agencies (state and federal health departments) for AIDS prevention activities, and the community development agenda of the funded groups, which often includes criticism of the policies of the funding agencies, especially in relation to drug policy and enforcement (Friedman 1993; Wodak 1993). One of the major tasks of the bureaucrat is to protect his or her minister; to find a group that one is supporting attacking the policies of that minister is threatening to the bureaucrat's psyche.

In Australia as well as in many other parts of the world, an understandable and often laudable domination of AIDS organizations by gay organizations has led to a restriction of resources available to other organizations, and a restriction of focus of prevention activities to the gay community. This is partly as a result of the different prevalences of HIV infection among gay and IDU populations, but that there is a more fundamental problem is exemplified in Australia by the reluctance of state AIDS Councils to take on IDU issues, despite the high prevalence of HIV among gay IDUs, and discrimination within gay organizations against IDUs who are gay (Crofts 1993).

These structural difficulties magnify internal difficulties for user groups. Born within hostile social environments, user groups need secure resource and support bases, which should be expected to come from their funding agencies and organized responses to AIDS. Management difficulties are a common feature of all such groups, bereft as they are of a history of self-management; indeed, if they were not, there would be no need for community development. Management needs resourcing, both with secure funding but, more importantly, with skills development. Funding a user group without this support sets it up to fail. For the most part, user groups in Australia have not had this support from specialist community development workers, even where funding has been more or less secure.

Conclusion: The Future of User Groups in Australia

The existence of user groups in Australia has been a significant factor in the country's continued success in preventing further spread of HIV among nongay IDUs, and in keeping prevalence at very low levels. User groups have been important at many levels, not the least of which has been in an advisory capacity to government, especially in the development of educational and harm-reduction programs. This success has been based on a willingness of government to be advised, which has been a fluctuating circumstance. Even so, if user groups had fulfilled no other role, the mere existence of a recognized body with whom government could consult, guaranteed the success of this strategy in the fight against HIV. User groups' simple continued existence, therefore, represents a major triumph of sorts. VIVAIDS exemplifies this. Even though perceived as an organization that lacks fiscal integrity, it remains in an advisory capacity to government, actively participating in the development of prevention strategies by its membership on advisory committees. NUAA has taken this rationale to its furthest refinement, becoming essentially a body devoted to influencing policy. That NUAA has managed to fulfill so many other roles is , tribute to the individuals involved.

The crisis for user groups in Australia now revolves around the creeping perception that they have done their job, the job for which they were called into existence. With increasing economic stringencies, and in what many see as a more "mature" phase of Australia's response to the HIV epidemic, miscalculations are being increasingly made about the epidemic among IDUs. Increasing complacency-"the epidemic has been contained"-has led to increasing questioning of the need for user groups as an arm of government strategy in some jurisdictions. This is manifest in, for instance, the reluctance of government to act decisively on newer issues affecting IDUs, such as the continuing raging epidemic of the hepatitis C virus (which is perceived as being of no threat to other communities, where HIV was); this despite loud calls for action from user groups. At the extreme, there is a feeling among some bureaucrats that a genie has been let out of the bottle, which they now would rather see returned in the interests of a peaceful life. This defines the challenges facing Australian user groups: firstly, survival; secondly, redefinition of purpose beyond simply HIV prevention; and thirdly, gaining acceptance for a broader agenda as a legitimate basis for continued inclusion in policy debates. Some aspects of the latter are being explored, by NUAA especially. They include: prevention of hepatitis C infection; promotion of action to prevent HIV among IDUs; protection of the human rights of HIV-infected IDUs in Asia; and participation in the drug policy reform debate. In unsympathetic times, none of these items would seem to guarantee user groups the continued funding they must have to remain viable and useful to their constituencies and to government (with the possible exception of NUAA). It is ironical that the success of user groups in Australia has deprived them of the major role and rationale for continued support-that of advocacy for HIV-infected IDUs.

Acknowledgements

We are grateful for the assistance of a large number of key informants and discussants, but in particular to Yolande Groenhout, Jacqui Goerl, Dave Burrows, and Jill Dixon.

References

Commonwealth Department of Health 1990 National AIDS strategy. Canberra: Australian Government Publishing Service.

Crofts, N. 1993 Gay injecting drug users: Double discrimination. Outrage 122 (July):62-65.

Crofts, N., J. Hopper, A.B. Breschkin, and S.A. Locarnini. 1994 Blood-borne viruses among Australian injecting drug users: Implications for spread of HIV. European Journal of Epidemiology 10:687-694.

Crofts, N., J. Hopper, R. Milner, D.S. Bowden, A.B. Breschkin, and S.A. Locarnini. 1993 Hepatitis C virus infection among a cohort of Victorian injecting drug users. Medical Journal of Australia 159:237-24 1.

Friedman, S. R. 1993 Going beyond education to mobilizing subcultural change. International Journal of Drug Policy 4:91-95.

Kaldor, J.M., J. Elford, A. Wodak, N. Crofts, and S. Kidd. 1993 HIV prevalence among IDUs in Australia: A methodological review. Drugs and Alcohol Review 12:175-184.

Wodak, A. 1993 Organizations of injecting drug users in Australia. International Journal of Drug Policy 4:96-97.