AIDS Education and Prevention, 26(3), 234–244, 2014 © 2014 The Guilford Press HIV AMONG PEOPLE WHO INJECT DRUGS MADDEN AND WODAK
AUSTRALIA’S RESPONSE TO HIV AMONG PEOPLE WHO INJECT DRUGS Annie Madden and Alex Wodak
Australia’s prompt and effective response to HIV among people who inject drugs is recognized internationally. In the early 1980s, there was growing awareness of the evolving threat presented by HIV. Despite erroneous but commonly held assumptions that people who inject drugs generally disregard their health, injecting drug users contributed significantly to Australia’s response to HIV. They formed peer-based organizations which advocated for: engaging affected communities in policy development and implementation; funding for peer education; and access to sterile injecting equipment. While government fear of appearing to condone injecting illicit drugs delayed the bi-partisan political support needed to implement programs to provide readily accessible sterile injecting equipment, needles and syringe programs were established relatively quickly. Strong evidence supports the effectiveness, safety, and cost-effectiveness of Australia’s early, decisive, and pragmatic public health and human rights-based approach. Without a comprehensive package of harm reduction and peer-based responses, HIV epidemics can develop rapidly among and from people who inject drugs.
For almost three decades, Australia has maintained one of the world’s lowest HIV infection rates among people who inject drugs (PWID). HIV among people attending needle and syringe programs is carefully monitored and has remained low (approximately 1% prevalence) though much higher in men who inject drugs and also engage in sex with men. In recent years, approximately 6% of HIV diagnoses in Australia has been in PWID, of whom more than half were men who also had sex with men (Kirby Institute, 2012). Australia’s success in establishing and maintaining an effective national HIV response is generally attributed to the development in the 1980s of a partnership between federal and state/territory governments, researchers, health care providers, and the communities most at risk of and living with HIV (referred to as the affected communities). This broad partnership is the cornerstone of Australia’s response to HIV and remains the basis of HIV prevention in Australia to the present day (ComAnnie Madden is with the Australian Injecting & Illicit Drug Users League, Canberra, and Alex Wodak is with the Australian Drug Law Reform Foundation. The authors gratefully acknowledge the substantial support and encouragement they have received over more than two decades from a large national and international network of people who use drugs, others at high risk of HIV, researchers, clinicians, and government and UN officials. The authors also wish to remember the committed efforts of many courageous friends and colleagues who are sadly no longer with us. Address correspondence to Annie Madden, Australian Injecting & Illicit Drug Users League, Level 2 Sydney Building, 112-116 Alinga St., Canberra, ACT 2601, Australia. E-mail: [email protected]
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monwealth of Australia, 2010a). Australia’s response to HIV is well regarded internationally and aspects of this approach have been endorsed as a model by the World Health Organization and used in a number of other countries. Three of the most noted aspects of Australia’s response to HIV prevention among PWID over the past 25 years have been the: • quick and decisive action by governments in the very early stages of the unfolding HIV threat in the 1980s, recognizing the inter-connected need to protect public health and human rights • adoption by all eight (then) governments of harm minimization as the official national drug policy in April 1985, thereby facilitating later access to sterile injecting equipment (and consequently access to the means of prevention) • recognition of the fundamental role of PWID as central partners in the national strategic response and as activists fighting for the rights and health of their own community.
THE RISE OF CONSUMER INVOLVEMENT AND HEALTH PROMOTION Understanding why and how Australia’s effective response to HIV among PWID was established and then maintained for almost three decades requires an understanding of the political climate and policy environment at the time HIV became a national and international concern. The political climate in Australia in 1985 was ripe for input from the community. In mid-1985, a petition of reform was addressed to the then Federal Health Minister calling for the establishment of a formal system of public participation within the national health system. This petition prompted a community consultation process, which led to the establishment of the Consumer’s Health Forum of Australia (Consumers Health Forum of Australia, 2013). Major changes discussed included re-introducing a universal health care system (referred to as Medicare), new medical treatments, drug and alcohol services, infection control, health promotion, and hospital treatments. The focus began to shift from responding to health problems to preventing illness and there was a growing recognition of the need to go beyond individual risk behaviors to take a more collective approach to public health (Ottawa Charter for Health Promotion, 2013). Increasing the emphasis on health promotion had considerable economic and social advantages. It was in this context that Australia’s response to HIV took shape. With growing awareness of HIV, it became clear that some identifiable groups were at particular risk of infection including PWID, people with hemophilia, sex workers and men who have sex with men. Australia heeded warnings from other countries experiencing increasing rates of HIV and took action accordingly.
KEY GOVERNMENT ARRANGEMENTS, POLICY OVERSIGHT, AND INFLUENCES In 1984, the then Federal Minister for Health, Neal Blewett, assessing the strengths and weaknesses of national methadone programs while visiting a number of countries, saw at first hand the problems resulting from HIV, including HIV infection among PWID. Upon returning to Australia, Blewett instituted a special program of
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federal funding for HIV education and prevention in the form of the Commonwealth AIDS Prevention and Education (CAPE) Program. The CAPE program provided one-off grants for short-term education prevention programs to identify, investigate, and address the needs of people in the key target population groups. Concurrently, the federal government established the National Advisory Committee on AIDS (NACAIDS) to oversee the results of the above funded projects and provide an identifiable federal advisory body (that government could rely upon) to manage the growing media and public interest and requests for information on HIV/AIDS. NACAIDS had members from all sections of the general community including the key affected communities and, importantly, had support across all major political parties. In late 1984, the Australian public were informed that the daughter of the then Prime Minister (Bob Hawke) was a “heroin addict.” This prompted considerable political and community discussion. The government promised a number of policy initiatives on drugs and, among other initiatives, convened The Special Premiers’ Conference (the Drug Summit) in Canberra on April 2, 1985, at which harm minimization was adopted as official national drug policy. This meeting and the initiatives flowing from it constituted a watershed in Australian drug policy. One of these initiatives was the National Campaign Against Drug Abuse (NCADA). In another unprecedented move, an injecting drug user representative was invited to participate on the NACAIDS medical and research sub-committee. This was a critical development because until this time virtually all expertise regarding PWID was provided by medical practitioners—on the assumption that people who injected drugs were either too intoxicated or chaotic to contribute intelligently to the discussions. In this way, the CAPE project funding rounds and inclusion of representatives of PWID proved to be a critical turning point. The grants developed into an annual program funding for HIV education and prevention in each state and territory and through this, AIDS Councils, sex worker organizations/projects and the earliest peer-based injecting drug user groups gradually developed. This collaboration between government and nongovernmental organizations (NGOs), notably excluded representation from the NCADA, an organization mainly concerned with drug control and preventing illicit drug use. Despite the growing international evidence of HIV spread among PWID, NCADA did not appear to recognize the HIV risk for PWID in Australia and instead regarded HIV prevention messages encouraging PWID to adopt safer injecting practices as condoning the use of illegal drugs and injecting drug use and thus undermining their policy. To address the perceptions that safer injecting education was effectively promoting drug use, early HIV prevention education campaigns were based on the following hierarchy of safety messages: 1. Don’t use drugs; 2. If you do use drugs, don’t inject them; 3. If you do inject drugs, don’t share injecting equipment; and 4. If you cannot avoid sharing injecting equipment, then clean syringes between uses using the 2 × 2 × 2 method (rinse twice in water, twice in bleach, then twice in water).1
1. This cleaning message was later replaced due to concerns about the quality of the evidence regarding the completeness of HIV destruction by the 2 × 2 × 2 method.
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PEER EDUCATION AND STATE/TERRITORY DRUG USER GROUPS As part of the funding agreement with the Federal Government-, state-, and territory-based AIDS Councils, sex worker and injecting drug user groups and projects were funded to provide peer education to those who participated in HIV risk behavior, identified at that time as unsafe sex and sharing or re-using equipment to inject drugs (Mindel & Kippax, 2013). The term peer education was used to describe a method by which people (often volunteers) from specific groups in the affected/‘at risk’ communities were trained in all aspects of HIV prevention by people from their community whom they accepted as being like themselves. This was important because for the first time people felt safe to disclose their drug use, sex work, or their sexuality without fear of judgement or stigma. After training they returned to their local communities and were formally and informally involved in sharing information about HIV and transmission risks to their friends and associates in an explicit, appropriate, and casual way. Peer education ensured that accurate, timely, and nonjudgmental information and resources (pamphlets, condoms, lubricant, and from the late 1980s, sterile injecting equipment) were made available to affected communities where they met, socialized, or conducted business. There was no power differential between the teacher and student: participants were equals, equally at risk, and equally knowledgeable. Every drug user had the capacity to be educated and to become an educator (Australian Injecting & Illicit Drug Users League [AIVL], 2006). Peer education enabled the important changes in behavior and practices that were urgently required to minimize HIV infection in the Australian population. The type of education initially proposed focused on the nitty gritty of injecting drug use practices, and could only work in a formal workshop setting if participants were prepared to publicly ‘out’ themselves as someone who injected drugs. While such workshops were and continue to be part of the approach to HIV prevention education, IDU peer educators understood that such workshops while necessary were not sufficient. They knew that the best way to reach the vast majority of their drug using peers with HIV prevention education would not be in formal workshop environments but through the many casual and opportunistic interactions that occurred when people came together to source, buy, and use drugs. This is what made HIV peer education among PWID unique, and also what has made it so effective and successful (Australian Injecting & Illicit Drug Users League [AIVL], 2006). Although a few state and territory governments continued to deny the existence or extent of injecting drug use in their jurisdictions, nevertheless by the late 1980s most drug user groups, sex worker groups, and/or AIDS councils had established peer education approaches. And as described in the next section, sterile injecting equipment was also made available to PWID via some form of needle exchange program (later renamed needle and syringe programs or NSPs; Burrows, 1998).
THE ADOPTION OF HARM REDUCTION AND THE COMMENCEMENT OF NSP IN AUSTRALIA As noted above, in 1985 as more information became available from countries in Europe and North America, harm minimization was adopted as Australia’s official, national drug policy. At around the same time, in the mid-1980s, it was estimated that several thousand gay men had recently become infected with HIV in an area of
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eastern Sydney. Eastern Sydney overlapped with an area that is also Australia’s largest drug market and is home to the largest population of PWID in the country and it was feared that HIV infection would spread to the community more generally, raising the prospect of a generalized epidemic. Once the genie was out of the bottle, so it was thought, it would be exceedingly difficult to regain control of the HIV epidemic. Although the term harm minimization was poorly defined at the time, the policy was adopted and, because it was already the official national drug policy, it almost certainly helped the later adoption and implementation of needle and syringe programs (NSPs). Harm minimization was defined officially in the late 1990s as the combination of supply reduction, demand reduction and harm reduction, and this definition has been retained almost two decades later. At that time although the then (Howard) Federal government adopted a Tough on Drugs slogan, it also quietly extended some harm reduction initiatives and directly funded needle syringe programs. It must be emphasized that before there was an awareness of HIV, PWID had extremely limited, if any, access to sterile needles and syringes—indeed in some states they were available only upon prescription from a medical practitioner, usually on the pretext of a patient being diabetic. In the mid-1980s, some PWID began covertly distributing sterile needles and syringes to their friends, as did some health workers. Breaching the NSW Drugs Misuse and Trafficking Act, 1985, some alcohol and drug health workers established a pilot needle syringe program in Darlinghurst, Sydney on November 12, 1986 as an act of civil disobedience. Those involved in the pilot argued that HIV was already being rapidly transmitted among PWID in the community, supporting this claim with data from a survey of HIV among PWID in Sydney (Blacker, Tindall, Wodak, & Cooper, 1986). Subsequently, a study supported the case for a pilot involving the testing of returned syringes, which showed an increase in HIV prevalence over time (Wolk et al., 1988). This disobedience attracted considerable media attention and when the NSW police decided not to prosecute the health workers responsible, the NSW government promptly began the task of increasing the availability of sterile injecting equipment. The NSW Government agreed in 1987 to begin establishing a needle and syringe program throughout NSW. Similar developments then followed in other states and territories and by late 1988 a national NSP system was operating across Australia (Australian National Council on Drugs, 2006). While not the first NSP to be established in the world in response to HIV (the first was set up in Amsterdam in 1984), this was an extremely important development for Australia. Despite what we know now about the effectiveness of NSP and peer education, it still seems remarkable that a shift to a harm reduction policy framework occurred in Australia in the late 1980s. Before that time, the possibility that governments would provide free access to sterile needles and syringes for people who inject illicit drugs seemed unthinkable. Over a quarter of a century later it is difficult to appreciate how ground-breaking this was at the time. It took a lot of hard work within and outside government to get to the stage where the majority of Australians is now quite accepting of NSPs. Some elements within government have continued to oppose these programs despite strong evidence in their favor and in 1985 the Federal government launched a high profile Drug Offensive. As the title suggests, this campaign, which included a direct mailing of a pamphlet to every Australian household demonizing illicit drugs and the people who used them, strongly supported a U.S., styled War on Drugs (Bennett, 2008) but had little impact. The arrival of HIV as an urgent policy issue in Australia constituted a turning point for public health (Australian Injecting & Illicit Drug Users League, 2002).
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There are currently an estimated 3,000 NSP outlets in Australia located in a range of primary, secondary and mobile settings (Department of Health & Ageing, 2011). From an initial annual distribution of 6.3 million needles and syringes in 1991 (Burrows, 1998), the number of 1 mL needles and syringes distributed through NSPs annually has steadily increased to reach 31 million in 2007 (National Centre in HIV Epidemiology & Clinical Research, 2009). These figures do not account for the large amount of other injecting equipment (apart from 1 mL syringes) that is now being distributed. Although 31 million needles and syringes may sound like a large number, demand for injecting equipment continues to outstrip supply with research in 2009 estimating that at least 50% of all injections in Australia still occur with used injecting equipment (National Centre in HIV Epidemiology & Clinical Research, 2009). Few public health initiatives can demonstrate benefits as impressive as the combination of IDU peer education, NSP, and OST in relation to HIV prevention. World Health Organization reviews of the evidence of the effectiveness of both IDU peer education and NSP were very favorable. The NSP review concluded that there was compelling evidence that increasing access to sterile injecting equipment contributes substantially to reductions in the rate of HIV and other blood-born viral transmission (Wodak & Cooney, 2006; World Health Organization, 2004, 2012).
THE IMPACT OF HARM REDUCTION NSPs in Australia still have to endure close scrutiny and frequent criticism in the media and from some politicians and community members. These attacks have forced the closure of some critical services and have created significant barriers to the establishment of new programs (Southgate, Blair, & Hopwood, 2000). However, it was clear that for PWID, peer education, and NSPs had benefits well beyond HIV prevention. From the outset, higher return rates of used equipment were more likely in locations where current or former PWID were providing the service. High return rates reduced the risk of discarded used injecting equipment being left in public places, thereby helping to maintain community support for these valuable but politically vulnerable programs. From the outset the concept of needle exchange did not necessarily mean just exchanging one used syringe for one sterile syringe, but also providing sterile injecting equipment in exchange for the opportunity to educate, become better informed and to get involved in preventing HIV. As well as the provision of sterile injecting equipment, early (albeit limited) funding for peer education and NSP allowed IDU peer educators within the fledgling drug user organizations to expand education, self-advocacy and support on a wide range of health, social, and legal issues for PWID (Newland & Treloar, 2012). In short, the early funding for IDU peer-based HIV prevention education was built upon a system of social networking and mutual support that had been in operation for decades, but prior to HIV had never been recognized or appreciated for its potential to significantly reduce drug related harm and improve public health (Madden, Byrne, & Bath, 2002). The groups and services funded under the early CAPE Program required a fundamental acceptance of the existence of injecting drug use in a way not seen previously in Australian society. This open acknowledgment of both the act of drug injecting and of people who inject drugs was, by any measure, a seismic shift in the Australian drug policy and in the public health landscape. It appeared to conflict
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fundamentally with the aims and objectives of many in the drug and alcohol treatment sector and the NCADA funding bodies. An unintended consequence of the NCADA funding to significantly expand the availability of methadone maintenance treatment was that it simultaneously highlighted the extent of regular or dependent injecting drug use in Australia in the mid-late 1980s. The expansion of methadone treatment places nationally brought more opioid injectors out of the closet, surprising even service providers with the size of the population of drug users. Soon the demand of PWID for OST greatly exceeded the capacity of the drug and alcohol agencies to provide this treatment—a situation that still prevails. In order to provide sufficient evidence to demonstrate the effectiveness and costeffectiveness of NSP, the Federal Department of Health and Ageing commissioned an independent research project (Return on Investment in Needle and Syringe Programs in Australia Study in 2000/2001). The report estimated that NSPs had prevented 25,000 HIV and 21,000 hepatitis C infections (by 2000), 4,500 deaths from HIV, and 90 deaths from hepatitis C (by 2010), resulting in savings of between AU$2.4 and $7.7 billion from an investment of $130 million between 1991 and 2000 (Health Outcomes International, 2002). A definitive review of the cost-effectiveness of NSPs has recently appeared (Kwon et al., 2012). A subsequent 2009 study (Return on Investment 2) confirmed these findings. An investment of $243 million between 2000 and 2009 achieved short-term health savings of $1.28 billion (National Centre in HIV Epidemiology & Clinical Research, 2009). Recent research conducted through the Drug Policy Modelling Program suggests growing support within the general community for many harm reduction interventions including NSP (Matthew-Simmons, Love, & Ritter, 2008). The National Drug Strategy Household Survey is carried out every three years and includes polling on some controversial interventions. Positive responses have gradually increased in surveys in 2004, 2007, 2010 (needle syringe programs 54.6% in 2004, 67.0% in 2007, 68.5% in 2010); methadone maintenance programs (58.0% in 2004, 67.7% in 2007, 69.3% in 2010); treatment with drugs other than methadone (59.1% in 2004, 68.5% in 2007, 69.4% in 2010); regulated injecting rooms (39.8% in 2004, 49.9% in 2007, 51.5% in 2010); and a trial of prescribed heroin (25.8% in 2004, 32.9% in 2007, 34.8% in 2010) (Australian Institute of Health and Welfare, 2011). The most recent Survey (2011) reported that in the 2004 and 2010, over two thirds of respondents supported NSPs. There is some concern however in regard to the level of continued funding. The majority of direct government spending in 2009/10 by commonwealth, state, and territory governments in response to illicit drugs was directed to law enforcement, representing 66% of government expenditure, followed by drug treatment (21%), prevention (9%), and harm reduction (2%) (Ritter, McLeod, & Shanahan, 2013). Compared with a similar estimate of government expenditure in 2002/03, proportional spending remained similar for law enforcement, drug treatment and prevention, but spending on harm reduction declined considerably from 3.9 % to 2.1%.
PARTNERSHIP AND THE POWER OF THE DRUG USERS’ VOICE The advent of HIV and the discovery of AIDS in the early 1980s meant that, in Australia, there was a radical rethinking of the concept of the Australian User. The Australian User was revealed as someone who was educatable, who lived in communities of like-minded individuals, who could form groups, who could play a role in government policy, who could be profitably consulted, and who could be employed through the
HIV AMONG PEOPLE WHO INJECT DRUGS 241 state. The fact that this dramatic change came through HIV/AIDS and not re-evaluations of our failed drug policy, was indicative of the state of rigid stagnation that existed in those organisations who were responsible for our policy of prohibition. However the most substantial result of this policy was revealed in its success. Australia is the only developed country to have avoided the so-called second wave of HIV infection. This is the result of a policy which allowed drug users to play a role in preventing the transmission of HIV infection. It was the result of a policy that allowed drug users to become human again. (Herkt, 1992)
The development of a national response to HIV in the late 1980s helped create the conditions for the formation of the Australian drug user movement. Before this era, there were some self-help groups operating at a local level. Some had become established in the early 1980s, often around drug treatment services. The focus of these groups largely related to the perspective of individuals or patients. The advent of HIV caused some of these groups to start developing a growing political awareness. Between 1987 and 1990, peer-based drug user groups and organizations gradually became established in every state and territory of Australia. While some of these groups were built upon existing patient groups and users’ unions (in the case of New South Wales and Victoria), drug user groups developed wholly in response to the emergence of HIV/AIDS in other parts of the country (the Australian Capital Territory, Queensland, South Australia, Western Australia, Tasmania, and the Northern Territory). Following the formation of peer-based drug user groups at the local level, in 1990 this grassroots network of organizations identified the need for a national peak organization to represent their collective interests and respond to issues of national importance for Australian PWID. The organization was called the Australian Intravenous (IV) League or AIVL, and was established in 1992. In 2003, AIVL changed its name to the Australian Injecting & Illicit Drug Users League. From the outset of the epidemic, PWID knew they needed free and nonjudgemental access to sterile injecting equipment and accurate and credible information about HIV. AIVL and the local drug user organisations knew they were best placed to reach their community—a community that had experienced decades of stigma and discrimination. By users for users became the mantra for peer-based drug user organisations as they took on the obligation of educating their community about HIV (Australian IV League [AIVL], 1990).
CONCLUSIONS The work by PWID and their peer-based organizations over the past 25 years in Australia has provided considerable benefits to their own communities and the broader society. This contribution has also provided a very useful model for PWID in many other countries (Jürgens, 2008). PWID in Australia can now claim more than two decades of being ‘Still Out Loud and Proud’. While it is unlikely that any Australian government would ever completely abandon its commitment to peer education, harm reduction, and NSP, it is important to guard against any erosion of support or funding if PWID wish to not only maintain their success to date, but also to seek greater improvements in the health and human rights of PWID. International experience shows that reducing access to peer education and/or sterile injecting equipment would place Australia at higher risk of a rapidly expanding HIV epidemic beginning among some of the most mar-
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ginalized PWID (World Health Organization, 2004). The number of newly diagnosed HIV infections in PWID in Greece, for example, increased from an almost negligible number in 2010 to 522 in 2012 following cuts to NSP resulting from the country’s severe fiscal problems (Wilson, Fraser, & Wilson, 2013). As it is for other members of the community, vigilance is the price of (relative) freedom from HIV for PWID. Continuing advocacy is needed in Australia to maintain peer-based HIV prevention education, drug user organizations and improve access to sterile injecting equipment and opioid substitution treatment. Like a number of other countries, Australia awaits the start of significant drug policy reform. Some progress has been made in reducing the harm from drugs. It is now time to reduce the harm resulting from our ineffective and costly drug laws. Drug law reform will not only improve the health and strengthen the human rights of PWID in Australia, but also improve the health and human rights of the broader community. It is also likely to reduce the relentless criticism and attacks on vulnerable harm reduction programs and peer-based drug user organizations. Like other countries, Australia has reached the point where decisions are needed to start reducing the negative health and social impacts of the continued criminalization of PWID. Senior members of the community in Australia and other countries now frequently criticize the ineffectiveness, severe collateral damage, and high cost of drug prohibition (Douglas, Wodak, & McDonald, 2012). Despite Australia’s success in HIV prevention, Indigenous Australians who inject drugs in 2013 are five times more likely to be HIV positive than their non-Indigenous counterparts (Kirby Institute, 2012). Over 200,000 Australians now live with chronic hepatitis C infection—the overwhelming majority of whom currently or previously injected drugs (Commonwealth of Australia, 2010b). As in a number of other countries, hepatitis C causes many more deaths than HIV in Australia and has done so for many years. Many prison inmates in Australia are serving sentences for drug-related offenses. Having been in prison is an independent risk factor for hepatitis C infection (Maher, Chant, Jalaludin, & Sargent, 2004). The rate of heroin overdose deaths increased 55 fold between 1964 and 1997 (Hall, Degenhardt, & Lynskey, 1999), while the number of opioid overdose deaths is again on the increase from 360 in 2007 to an estimated 712 people in 2010 (Roxburgh & Burns, 2012). Drug law reform is critical in efforts to maintain or reduce HIV infections among PWID (Global Commission on HIV & the Law, 2012). A number of factors are now forcing governments to re-examine long standing social policies in areas important to HIV control. First, it is clear that many western governments are experiencing increasing difficulty balancing revenue and expenditure. Second, HIV infections have been increasing slowly for some time in Australia and other developed countries, but now seem to be increasing at a faster rate. Third, younger people are less inclined to share the discriminatory attitudes of older generations to men who have sex with men, sex workers, and PWID. Fourth, there is a growing view among senior community leaders in many countries that conventional drug policy, heavily reliant on law enforcement, has been a comprehensive failure and must be replaced by a more effective, safer, and more cost-effective approach. Peer-based drug user organizations have played a critical role in the political, health, and human rights advances in relation to PWID over the past three decades. As we move from a criminal justice frame to a human rights approach to drug use, peerbased drug user organizations will have an even more important role to play in ensuring that nothing about us without us remains the cornerstone of all effective public health and social justice responses among PWID.
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