AIDS Education and Prevention, 26(3), 202–213, 2014 © 2014 The Guilford Press BARRIERS TO LEGAL AND HUMAN RIGHTS CAMERON AND GODWIN

BARRIERS TO LEGAL AND HUMAN RIGHTS IN AUSTRALIA IN THE ERA OF HIV TREATMENT AS PREVENTION Sally Cameron and John Godwin

This paper analyses developments and debates regarding legal and human rights issues relevant to the Australian HIV response in the context of treatment as prevention (TasP). A refocusing of prevention priorities on individual responsibilities to ‘test and treat’ without regard to the legal and human rights context is, we argue, problematic. The paper maintains that the justification of testing and treating for the greater good risks eroding the foundations of a human rights-based approach to HIV prevention, and that the TasP agenda as presently conceived may divert attention from pressing law reform issues relating to sex work, illicit drug use, and criminalization of HIV transmission.

The term treatment as prevention (TasP) describes HIV prevention approaches that seek to increase HIV testing and uptake of antiretroviral therapy (ART) to reduce HIV transmission. TasP is based on the understanding that ART reduces viral load in individuals, reducing HIV transmission risk at individual and population levels. In Australia, the role of ART in prevention has been the subject of debate for almost a decade (National Association of People Living with HIV/AIDS, 2005, p. 15). The response to TasP was initially lukewarm, with affected communities wary of an initiative that grew out of ‘the lab’ and concerned about the potential undermining of behavioral prevention (Australian Federation of AIDS Organisations [AFAO], Australasian Society for HIV Medicine, National Association of People Living with HIV/AIDS, 2008). TasP seemed a poor fit for the Australian HIV epidemic, which is concentrated among gay men and other men who have sex with men (MSM). HIVtesting rates among gay men were understood to be high. Sexually transmissible infections (STIs) among gay men and other MSM were on the rise and the possibility of increasing behavioral disinhibition (Kippax, 2010a) was recognized. The importance of differentiating TasP for couples in serodiscordant relationships and prevention across other at-risk populations was realized (Garnett & Gazzard, 2008), with survey data showing serodiscordant relationships were relatively uncommon among gay men in Australia (Holt & Lee, 2010). Surveillance data suggested that an undetectable viral load was unattainable for some 10 to 20% of people on treatments (National Centre in HIV Epidemiology and Clinical Research, 2009). Sally Cameron works as a consultant and as an HIV Education and Health Promotion Officer (Policy) at the Australian Federation of AIDS Organisations. John Godwin is an independent consultant based in Sydney, Australia. Address correspondence to Sally Cameron, Australian Federation of AIDS Organisations, PO Box 51, Newtown, NSW, 2042, Australia. E-mail: [email protected]

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Views began to shift after revisions of available Australian data suggested estimates of HIV testing rates among MSM may have been overinflated (Guy et al., 2010; Holt, Mao, Prestage, Zablotska, & de Wit, 2010; Rawstorne et al., 2009) and as the international evidence of the potential preventive benefits of HIV mounted. In 2010, studies were published that found an association between high coverage of ART and declining HIV diagnoses in San Francisco (Das et al., 2010) and Vancouver among people who inject drugs (Montaner et al., 2010). The use of ART by HIV-negative gay men as pre-exposure prophylaxis (PrEP) was also shown to be efficacious under clinical trial conditions (Grant et al., 2010). In 2011, the HPTN 052 clinical trial involving serodiscordant (mainly) heterosexual couples in Africa showed that ART had reduced the transmission of HIV by a remarkable 96% in a trial setting (Cohen et al., 2011). The release of the HPTN 052 study findings, considered by many to signal a paradigm shift in the global HIV response, also had significant effect in Australia where advocates have long held aloft Australia’s evidence-based approach to HIV strategy. By 2012, TasP was becoming the dominant discourse among many in the sector and among affected communities, particularly gay men and other MSM. National community-based HIV organizations began actively engaging politicians and bureaucrats on the need to revitalize the prevention response, calling for a comprehensive overhaul of prevention, testing and treatment policy in light of TasP (Australian Federation of AIDS Organizations, 2012a). The National Association of People with HIV Australia (NAPWA) proposed a set of targets: • 90% of people with HIV on ART by the end of 2013. • Reduce sexual transmission of HIV among MSM by 8% by 2015. • Sustain virtual elimination of HIV transmission from injecting drug use and among sex workers and clients (Whittaker, 2011). Community agencies issued the Melbourne Declaration, which articulated actions to increase uptake of testing and ART, make PrEP available, and strengthen the enabling environment (Australian Federation of AIDS Organisation, 2012b). Australia’s HIV response began to be reoriented, with adjustments made to health promotion approaches and testing protocols. TasP had become a central plank of domestic HIV strategy even though controversy continues about the effectiveness of TasP and PrEP globally and disagreement remains about the implications of the international evidence for HIV prevention in Australia (Wilson, 2012). Significantly, the evidence in favor of TasP had been called into question by Australian data showing that despite a high proportion of HIV-infected men being on antiretroviral treatment with undetectable viral load, the per-contact probability of HIV transmission due to unprotected anal intercourse was similar to estimates reported from developed country settings in the pre-HAART era (Jin et al., 2012). The TasP approach continues to be evaluated in light of available and rapidly emerging, albeit contested, evidence. It remains vital that careful consideration be given to the potential of TasP given the particularities of Australian epidemic contexts, but also the need to ensure HIV prevention strategy extends beyond TasP. A singular focus on TasP (and PreP) is highly likely to prove ineffective without considering other contextual factors, including the legal and policy environment necessary for effective HIV responses. A re-medicalized response must not facilitate neglect of the social and structural determinants that shape public health outcomes.

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An increased focus on biomedical prevention risks distracting policymakers, community activists, and HIV organizations from the imperative to address complex unresolved legal and human rights issues that disempower communities and disable effective HIV strategy.

FRAMING TASP WITHIN A HUMAN RIGHTS RESPONSE Amid growing commitment to implement TasP, specific questions arise about the intersection of medicine, public health, and human rights, including the crucial role of social and legal contexts in determining prevention outcomes. After all, “biomedical prevention technologies are also social interventions, whether that is explicitly recognized or not” (Adam, 2011), and TasP is an approach which relies on increased testing and: …like condom use, is clearly strongly dependent on [treatment] “adherence” a term often associated with patient recalcitrance and management, but which glosses the very large realm of how interventions fit with everyday exigencies, cross-cutting demands of home and workplace, available options, economic resources and interpretive frameworks of the people who are to adopt these technologies. (Adam, 2011)

Importantly, interpretive frameworks are informed by many factors including experiences (how they and others are/have been treated), access to expert information and by perceptions of individual rights and responsibilities. While mandatory testing or treatment is unlikely in the Australian context, issues of coercion are not so clear, and notably, need not be explicit (Slavin, 2010). Even in a supportive clinical context, “patient autonomy is often incommensurable with the conditions under which HIV care can be provided” (Pacho, 2012), including patients’ decisions being informed by the opinions of doctors, fellow patients, or partners (e.g., Kippax, 2010b; Kippax & Race, 2003). Work to better understand the attitudes of clinicians regarding early treatment uptake and treatment to prevent HIV transmission has begun (Mao et al., 2013). As debate heats up, there is a risk of an uncomfortable dynamic being generated by overt or subtle pressures on individuals to comply: to take the pills, for their own good, or for the good of the community. Numerous questions remain unanswered. How might TasP priorities undermine rights “to dignity, autonomy, privacy, information, and [freedom] from discrimination” (Clayton, Mabote, & Hikuam, 2012, p. 9) that have been hard won during 30 years of the Australian HIV response? What will be the experience of those who do not toe the line and who, for whatever reason, do not go on treatment or test early? Should their right to manage their own health be applauded, supported, criticized or condemned? Are prosecutions for unsafe sex without disclosure of untreated HIV status of social value or defendable? Does failure to pursue a low viral load increase culpability in instances of exposure or transmission? And how might the possibility of prosecution inform treatment uptake? Reasons for locating TasP strategy within a human rights framework are not just ethical or legal, they are pragmatic (Elliott & Von, 2012). Without this, affected communities will disengage from prevention, treatment, and care efforts. Both the “greater good” and the “for your own good” justifications erode the foundations of a human rights approach. It is essential that accurate information on treatments be communicated to affected communities; that HIV testing processes (including rapid

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tests) facilitate informed consent; that people are not pressured to start treatment; and that counseling and advice on the legal and social consequences of testing and treatment are readily available. The issue of human rights becomes more immediate for those who might be considered to pose a greater risk, particularly those on the radar of public health authorities. Treatment must not become a prescribed component of regulation for populations perceived to be posing a risk to public health (such as sex workers) or a default strategy for managing people who have come under the supervision of public health authorities due to concerns regarding risk behaviors. Such misguided public health policy would erode human rights and disenfranchise many from priority populations.

UNFINISHED BUSINESS While attending to the reorientation of the prevention response, policymakers should be reminded that the development of a human rights-based response is a matter of unfinished business. Successive Australian national HIV strategies have recognized the importance of attention to legal and human rights issues, based on the understanding that punitive measures undermine community mobilization and drive people away from services and support. Australian public health practice is informed by “the critical concept that public health and human rights are not incompatible. In fact, the protection of human rights is critical” (Scamell & Ward, 2009, p. 48). The foundations of a human rights-based HIV response in Australia were built in the context of community activism led by organizations of people living with HIV, sex workers, gay men and people who inject drugs (PWID). During the 1990s, public health laws were modernized, discrimination and privacy protections for people living with HIV were introduced, and the legal status of gay men was significantly improved. At the international level, the Australian response was viewed as a model, and Australian jurists played a key role in development of international guidelines that defined the human rights-based approach to HIV (Office of the High Commissioner for Human Rights & Joint United Nations Programme on HIV/AIDS, 1998). Although progress was achieved on many fronts, by the turn of the century momentum was lost. The introduction of ART from 1996 meant that there was an increasing focus on medical solutions to the epidemic, diverting attention from the need to address social and legislative factors that contribute to HIV vulnerability and risk. As HIV was reconceptualized as a chronic manageable condition, the sense of AIDS as a community crisis requiring radical legal and policy solutions waned. The more contentious areas of law reform were set aside, such as decriminalization of sex work and illicit drug use, and the need to address reckless transmission and nondisclosure of HIV status in a way that respects human rights. Despite sustained advocacy by some, the human rights agenda drifted. The advent of TasP and the increasing dominance of the biomedical prevention paradigm carries the risk that attention to the rights agenda will be further delayed and diluted. The range of unaddressed issues related to criminalization of HIV transmission, sex work, and illicit drug use illustrates the extent of work still to be done.

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CRIMINALIZATION OF HIV EXPOSURE AND TRANSMISSION All Australian states and territories have criminal laws that may be applied to cases of HIV transmission. Charges generally relate to endangerment or causing a serious or grievous bodily disease, injury, or harm. As at early 2013, 38 prosecutions had occurred with a notable increase in prosecutions since 2007.1 It is difficult to make sense of those 38 prosecutions amid the 31,645 HIV cases diagnosed in Australia since 1982 (Kirby Institute, 2012). All prosecutions have related to people who intentionally engaged in unprotected sex without disclosing their HIV status; however, in some cases HIV was transmitted, in others not. Some charges relate to a single sexual contact, others to more than one contact. Some involve short-term liaisons and others involve long-term relationships. Some involve recent relationships while others involve people prosecuted many years after a sexual encounter had occurred. In 2008, two cases were finalized involving transmission that had occurred a decade ago or longer (Cameron, 2011). Some cases involve circumstances strikingly similar to other cases effectively dealt with solely by public health interventions. Given that approximately 1,000 new infections occur through sex each year, it is clear that unsafe sex is occurring. In that context, prosecutions are unacceptably arbitrary and the penalties (including jail terms exceeding 10 years) excessive. Prosecutions typically conflate the defendant’s desire to have unprotected sex with a desire to transmit HIV, despite the risk of harm from a single sexual encounter being minimal compared to the risk of harms from more conventional assaults such as being punched, shot, or stabbed. The gravity of harm is also important to consider given that ART is delivering very low mortality from HIV and people with HIV are able to lead relatively normal lives. HIV prosecutions negate public health messages of mutual responsibility for safe sex practice. All prosecutions to date have been based on the premise that people living with HIV should disclose their HIV status prior to sex. That premise creates a false expectation that HIV-positive people will disclose (Dodds et al., 2009). It also makes it less likely that people will use a condom following disclosure of assumed HIV-negative status, whether or not they are actually negative (Rawstorne et al., 2009). In Australia, this has real consequences given modeling suggesting 30% of new HIV infections among MSM are the result of transmission from the estimated 9% of MSM who are unaware they are HIV positive (Wilson, Hoare, Regan, & Law, 2008). There is no evidence at all that HIV-related prosecutions decrease risk taking. The criminalization of HIV is particularly frustrating given that public health laws offer an alternative form of response based on remedies that can be tailored to the complexities of individual cases. All Australian states and territories have public health management guidelines addressing people who put others at risk of HIV. The guidelines outline a series of escalating interventions with the requirement that they be as supportive as possible, and that the least invasive interventions be used first. Management by health authorities includes individualised case management and can include counseling and formal warnings, behavioral supervision, public health orders, or detention.2 Prosecutions under state and territory public health laws may 1. Synopsis of case data based on ongoing research by Sally Cameron. 2. The number of people to whom these mechanisms apply at any one time is small. In mid-2009, 20 HIVpositive individuals were subject to public health orders. Few people have ever been detained.

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occur, but only after other interventions have been tried or are considered unlikely to produce change. The interpretation of scientific data on transmission risk by communities, police, prosecutors, and courts (informed by understandings of TasP) will influence the frequency and direction of future HIV prosecutions. This area requires active monitoring at the national level, stronger engagement by public health officials, and research to assess health promotion impacts.

SEX WORK3 The Australian sex industry demonstrates very high uptake of safe sex practices and includes very few sex workers living with HIV (Donovan et al., 2009). There are no recorded cases and only a handful of suspected cases of HIV transmission in an Australian sex work setting—an extraordinary achievement in HIV prevention. Pragmatic decisions to fund peer-led prevention efforts even in contexts where sex work is criminalized have been integral to prevention successes. The regulation of sex work affects the capacity of both sex workers and clients to prevent HIV transmission. Each of Australia’s states and territories has its own sex work laws, with no two systems the same: ranging through criminalized, licensed, or decriminalized aspects of brothel, street-based, sole operator, and escort work. All states and territories criminalize some aspects of sex work and a variety of laws apply to use of condoms, health testing, and working while infected with an STI. Criminalization drives sex work underground, reducing sex workers’ access to health and other social supports and impeding outreach. Criminalization puts sex workers and clients at risk of STIs as it reduces sex workers’ capacity to exercise control over their work (Alexander, 2001). Police use of condoms as evidence continues to be reported to sex worker organizations. Notably, criminalization has not eradicated criminalized practices (Harcourt, Egger, & Donovan, 2005). A comparison of the number of street-based sex workers in Melbourne (illegal) and urban New South Wales (NSW) (legal in most instances) found a comparable number of workers (Morton, Wakefield, Tabrizi, Garland, & Fairley, 1999). Licensing usually applies to business premises or owners/operators but in some parts of Australia it applies to individual workers. Licensing/registration operates in the Northern Territory, Queensland, Victoria, and the Australian Capital Territory (ACT). Licensing can require that a sex worker’s identity be recorded on a register and that workers undertake mandatory sexual health screening. Legislation effectively mandates STI testing of sex workers in the ACT, Queensland, and Victoria. Although many work in the sex industry for a short term,4 and identify as a sex worker to greater or lesser degree, licensing and consequent keeping of records can impact individuals long after they have left the industry. Licensing has proven problematic for a range of reasons, including being expensive for both governments and business owners (Scarlet Alliance, 2012). Evidence suggests such requirements are unwarranted and counterproductive (Samaranayake 3. The authors acknowledge input to this section from Scarlet Alliance, in particular Janelle Fawkes (member, Commonwealth Government Legal Working Group). 4. For example, the 2010 LASH (Law and Sexual Health) study found the median time brothel-based sex workers had spent working in the sex industry was 1.6 years (Sydney), 4 years (Melbourne), and 3 years (Perth; Harcourt et al., 2010).

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et al., 2009; Jeffreys, Fawkes, & Stardust, 2012; Wilson et al., 2009). Australian research confirms that licensing creates a two-tiered system of legal and illegal workers, with illegal workers wary of public health services. Consequently, licensing “is a threat to public health” (Donovan et al., 2012, p. 7). Decriminalization refers to the removal of sex industry-specific criminal laws, with regulation falling under public health and town planning laws.5 Decriminalization facilitates health promotion (Harcourt et al., 2010) and has been shown to improve occupational health and safety conditions (Pinwill, 1999), eradicate police corruption (Donovan, Harcourt, Egger & Fairley, 2001) and increase opportunities for workers to choose between types of employment, moderating the power of operators and allowing workers to organize in their own right (Sullivan, 2010). Decriminalization also increases the likelihood of sex workers reporting incidents of violence to police (New Zealand Government, 2008). The removal of most criminal sanctions has not increased the incidence of sex work in NSW (Donovan et al., 2012). Australian sex workers continue to experience systemic discrimination in accessing goods and services, housing and accommodation, employment opportunities, and access to justice (Scarlet Alliance, 2011). Anti-discrimination laws relating to sex work are inconsistent and narrowly defined. In the ACT, Queensland, Tasmania, and Victoria, anti-discrimination laws protect only some sex workers in some circumstances. In other states, anti-discrimination laws provide no protection (Scarlet Alliance, 2011). State and territory governments have resisted proposals for decriminalization and greater coverage of anti-discrimination law, fearful of an electoral backlash. Governments are yet to give consideration to the specific implications of TasP to the sex industry, such as the relevance of rapid tests, home tests, and pre-exposure prophylaxis. Given the preference of most state and territory governments for interventionist licensing models, there is a risk that these technologies could be used to monitor and police behaviors, rather than to protect the health of sex workers and clients.

PEOPLE WHO INJECT DRUGS (PWID)6 Needle and syringe programs were pioneered by PWID and their representative organizations, before being institutionalized as public health interventions. Early implementation of needle and syringe programs and methadone programs, underpinned by community empowerment strategies (peer education, advocacy, and outreach), produced impressive prevention results. Only 3% of HIV diagnoses between 2006 and 2010 were the result of injecting (Kirby Institute, 2011).7 However low rates of HIV transmission have engendered political complacency. Harm reduction innovation has stalled. Australia is no longer at the forefront of harm reduction strategy. Injecting drug use remains criminalized, generating adverse public health outcomes including increased risk of transmission of blood-borne diseases and drug5. Abuses such as sexual assault or trafficking continue to be covered by criminal law. 6. The authors acknowledge input to this section from Australian Injecting and Illicit Drug Users League, in particular Annie Madden (member, Commonwealth Government Legal Working Group) and Zahra Stardust. 7. Although notably, injection drug use was the route of HIV transmission among 20% of Aboriginal or Torres Strait Islander people diagnosed HIV-positive

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related overdose. Peer distribution of syringes is effective and widely practiced, yet in most states it is illegal for one drug user to provide syringes to another. Criminalization defines the social setting in which drug use occurs. Risk of harm is heightened when a drug source is illegal and drug quality unknown, the physical environment is clandestine, clean injecting equipment is not accessible, the act of injecting is hurried, and expert health advice is unavailable. The right to health of PWID is undermined by stigma and discrimination, which is pervasive and entrenched (Anti-Discrimination Board of NSW, 2001). More than half of participants in the Barriers and Incentives to Drug Treatment for Illicit Drug Users Project reported discrimination by pharmacy staff (63%), doctors and/or nurses (54%), and other health care workers (36%; Treloar et al., 2004, p. 161). The experience of stigma is so intense that the Australian Injecting and Illicit Drug Users League reports contact with many individual drug users who live with debilitating and even life-threatening conditions rather than seek treatment from health services. Anti-discrimination law does not cover discrimination based on a history of injecting drug use. A significant proportion of people in prisons are incarcerated for offenses relating to illicit drugs, which has adverse public health outcomes. Imprisonment is one of the main drivers of the hepatitis C epidemic, and having ever been in prison is identified as an independent risk factor for hepatitis C infection (Maher, Chant, Jalaludin, & Sargent, 2004). High hepatitis C transmission rates make it obvious that unsafe injecting practices occur in prisons and the general community (Dolan et al., 2010).8 Both the National HIV Strategy 2010–2013 and the National Hepatitis C Strategy 2010–2013 highlight the need to address legal barriers to prevention strategies (Commonwealth of Australia, 2010a, 2010b). State and territory governments remain unmoved. Nowhere is this obstinacy more apparent than in relation to Sydney’s pioneering Medically Supervised Injecting Centre (MSIC), established as a trial in 2001. Five independent evaluations were undertaken demonstrating success before the Government granted the MSIC ‘permanent’ status. By that time, the MSIC had intervened in 3,500 drug overdoses none of which resulted in death, ambulance callouts had decreased, instances of public injecting and the number of discarded syringes had significantly decreased, and hundreds of people had been assisted to access health services. The Centre had saved the health system an estimated AUD 658,000 per annum. No adverse outcomes were identified (KPMG, 2011). No other Australian state or territory government has followed suit. A human rights agenda requires decriminalization of drug use to provide an enabling environment for health promotion, and decriminalization of peer distribution of syringes. Heroin prescription would facilitate health promotion and reduce risk, as justified by international evidence showing such programs have led to improvements in social functioning, psychological and physical health, and reductions in criminality (Lintzeris at al., 2009). Reform of anti-discrimination laws is important to guarantee people with a history of drug use access to complaints mechanisms. Expansion of diversionary schemes would keep PWID out of prison, and the introduction of syringe programs in prisons is long overdue. Australia’s first prison syringe program was approved in 2012, although implementation is yet to commence (McKay, 2013). 8. An estimated 304,000 people living in Australia in 2011 had been exposed to hepatitis C virus (Kirby Institute, 2012).

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CONCLUSION This paper does not seek to frame TasP and human rights agendas as competing priorities. Rather, it argues that human rights must inform all elements of the HIV response, including TasP strategy, which requires a high uptake of HIV and STI testing, a sophisticated understanding of HIV risk related to behaviors, trust in health care providers, adherence to ART and engagement with medical and other services. Without respect for and protection of human rights, people living with HIV will lose trust in information and service providers, and withdraw from health and support services. Community engagement with HIV prevention strategies will suffer. Despite human rights and anti-discrimination being one of four priority areas identified in Australia’s Sixth National HIV Strategy 2010–2013 (Commonwealth of Australia, 2010b), successive governments have neglected the human rights priorities of sex workers and PWID, and have failed to recognize the harms caused by the criminalization of HIV risk taking. A refocusing of priorities on individual responsibilities to ‘test and treat’ is potentially problematic, particularly given the existing climate of stigma and blame created by the upswing in prosecutions for nondisclosure of HIV status. It is also problematic if it results in a failure to understand the importance of a comprehensive prevention approach that encompasses populations at risk due to hostile legal and human rights contexts. For Australian populations in which HIV is prevalent, i.e., gay and other MSM, there is no doubt that TasP is set to play a central role in HIV prevention. It is vital that gay men and other MSM are positioned as agents rather than objects, “to take up the medical in an agentic creative way” (Kippax & Race, 2003, p. 9). Populations in which HIV is at low or minimal levels, i.e., female sex workers and PWID, must also lead their prevention agendas. However, for these populations, interventions other than TasP (such as peer education, needle and syringe programs and condoms supported by community mobilization and human rights advocacy) are likely to be of greater significance in sustaining Australia’s prevention successes. TasP has been heralded as revolutionary but realization of its potential requires an enabling environment. As the Australian HIV response is rethought, it is vital that respect for the human rights of marginalized populations is reinstated as a primary concern of HIV policymakers. Community-based organizations of people living with HIV, gay men, people who use drugs, and sex workers have been at the forefront of efforts to champion a human rights-based response since the 1980s, and must remain central to HIV prevention and treatment strategies.

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Barriers to legal and human rights in Australia in the era of HIV treatment as prevention.

This paper analyses developments and debates regarding legal and human rights issues relevant to the Australian HIV response in the context of treatme...
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