Law as a structural determinant of health

Clearly, in order to be able to determine whether law is unsafe as I have described it here, it is necessary to have an appropriate evaluative benchmark. In the context of this analysis, I would argue that this benchmark has two components. The first is whether the law in question does, or may, have the effect of impeding efforts at preventing the spread of HIV. The second is whether it does, or may, sustain HIV-related stigma and discrimination against people living with the virus, or otherwise diminishes their full enjoyment of the human rights to which we are all – irrespective of our HIV status – entitled. Put another way, law may be evaluated as being unsafe both from an instrumental, or functional, perspective and also from a principled, or value-based, one. These may, of course, overlap – as when the denial of treatment (which would constitute a breach of the right to the highest attainable standard of health) results in heightened infectiousness (which may increase the risk of onward transmission).

The point to make is that law is, and should be seen as, an important structural determinant of health. For some years now, public health scholars have advanced the argument that in order to respond effectively to disease and ill-health, we need to develop and implement interventions not only at the micro-level of the individual, but at the macro-level of the social, the political and the economic (Blankenship et al., Reference Blankenship, Bray and Merson2000, Reference Blankenship, Friedman, Dworkin and Mantell2006; Gostin, Reference Gostin2004; Adimora and Auerbach, Reference Adimora and Auerbach2010; Quevedo-Gómez et al., Reference Quevedo-Gómez, Krumeich, Abadía-Barrero, Pastrana-Salcedo and Van Den Borne2011). For example, in the context of HIV, it has been argued that while it is important to emphasise and promote the use of condoms and clean syringes because these minimise the risk of acquisition and transmission of the virus, it is important to recognise that the probability of people doing so will be significantly impacted by the environment in which they negotiate sex or use drugs (May and Williams, Reference May and Williams2002; McLemore, Reference Mclemore2008; Platt et al., Reference Platt, Hickman, Rhodes, Mikhailova, Karavashkin, Vlasov, Tilling, Hope, Khutorksoy and Renton2004, Reference Platt, Bobrova, Rhodes, Uusküla, Parry, Rüütel, Talu, Abel, Rajaleid and Judd2006; Small et al., Reference Small, Rhodes, Wood and Kerr2007; Sarang et al., Reference Sarang, Rhodes and Platt2008; Rhodes et al., Reference Rhodes, Mikhailova, Sarang, Lowndes, Rylkov, Khutorskoy and Renton2003, Reference Rhodes, Singer, Bourgois, Friedman and Strathdee2005, Reference Rhodes, Platt, Maximova, Koshkina, Latishevskaya, Hickman, Renton, Bobrova, Mcdonald and Parry2006a, Reference Rhodes, Platt, Sarang, Vlasov, Mikhailova and Monaghan2006b; Rhodes and Sarang, Reference Rhodes and Sarang2012; Strathdee et al., Reference Strathdee, Lozada, Pollini, Brouwer, Mantsios, Abramovitz, Rhodes, Latkin, Loza, Alvelais, Magis-Rodriguez and Patterson2008, Reference Strathdee, Hallett, Bobrova, Rhodes, Booth, Abdool and Hankins2010; Degenhardt et al., Reference Degenhardt, Mathers, Vickerman, Rhodes, Latkin and Hickman2010).

The same is true of access to testing, care and treatment. Policies and interventions that focus on the individual assume that people have, and are able to exercise, sufficient autonomy to be able to make healthy choices as regards themselves and others, while structural interventions recognise that these choices are constrained – and in some cases largely determined – by social structures. It is only by identifying and addressing the pathogenic effects of these structures that we can hope to achieve real change. More importantly, there is evidence that, despite the difficulties, costs and time involved, beneficial change is possible. Thus, where people at heightened risk of infection have been oppressed and controlled by those in power, and treated by financial donors as merely the passive recipients of their largesse, beneficiaries for only so long as they do their masters' bidding, HIV prevalence will remain high; but where – as has happened in the red-light district of Sonagachi in Calcutta and elsewhere – communities of sex workers have been empowered and mobilised so as to increase representation and active participation in prevention programming, there is evidence that prevalence will be reduced (Jana and Singh, Reference Jana and Singh1995; Jana et al., Reference Jana, Basu, Rotheram-Borus and Newman2004; Bandyopadhyay and Banerjee, Reference Bandyopadhyay and Banerjee1999; Basu et al., Reference Basu, Jana, Rotheram-Borus, Swendeman, Lee, Newman and Weiss2004; Cohen, Reference Cohen2004; Cornish and Ghosh, Reference Cornish and Ghosh2007; Blankenship et al., Reference Blankenship, West, Kershaw and Biradavolu2008, Reference Blankenship, Biradavolu, Jena and George2010; Kerrigan et al., Reference Kerrigan, Telles, Torres, Overs and Castle2008; Ghose et al., Reference Ghose, Swendeman, George and Chowdhury2008, Reference Ghose, Swendeman and George2011; Shannon and Csete, Reference Shannon and Csete2010; Swendeman et al., Reference Swendeman, Basu, Das, Jana and Rotheram-Borus2009; Erausquin et al., Reference Erausquin, Biradavolu, Reed, Burroway and Blankenship2012; Biradavolu, et al., Reference Biradavolu, Blankenship, Jena and Dhungana2012). Similar – if as yet incompletely evaluated – benefits may be seen where discrete HIV services are integrated into other areas of a country's health system, thus increasing rates of testing and treatment uptake, and where women and girls in resource-poor settings are provided with access to micro-finance and educational opportunities, thus improving their economic and social independence and decreasing the likelihood that they will be drawn into survival sex work and its attendant health risks (Kanyamurwa and Ampek, Reference Kanyamurwa and Ampek2007; Kim et al., Reference Kim, Pronyk, Barnett and Watts2008; Pronyk et al., Reference Pronyk, Kim, Abramsky, Phetla, Hargreaves, Morison, Watts, Busza and Porter2008; Underwood et al., Reference Underwood, Skinner, Osman and Schwandt2011). These interventions work, or have the capacity to produce benefits, because they recognise that although the transmission and survival of HIV is at one level merely a product of its physical, and a consequence of our physiological, properties, transmission risk is something that is susceptible to collective human agency and political action, as well as to individual risk reduction strategies and behavioural change (Campbell and Cornish, Reference Campbell and Cornish2012). HIV exists not just in nature, but in a social, political and economic environment over which human beings can – if they have the will, the opportunity, and the resources – exert control.

The HIV Legiscape

Law, too, is part of this environment. HIV exists and thrives in what might be termed a legiscape – a landscape made up by law's authoritative texts (legislation and decided cases), its enforcement (by police and other officials), and its institutions (courts, prisons, immigration and asylum detention centres and the like); and it exists as a phenomenon in which the law has been implicated both directly and indirectly.Footnote ³ Directly, examples include the criminalisation of HIV transmission and exposure (Weait, Reference Weait2007, Reference Weait2011; UNAIDS, 2008; Global Commission on HIV and the Law, 2012), HIV-related travel restrictions (Allin, Reference Allin1987–1988; Amon and Todrys, Reference Amon and Todrys2008; Lazarus et al., Reference Lazarus, Curth, Weait and Matic2010; Lai et al., Reference Lai, Hwang and Beasley2012), the banning of people from certain higher-risk populations from donating blood (Galarneau, Reference Galarneau2010; Martucci, Reference Martucci2010; Grenfell et al., Reference Grenfell, Nutland, Mcmanus, Datta, Soldan and Wellings2011; Smith et al., Reference Smith, Fiddler, Walby and Hier2011; Symington, Reference Symington2011) and statutory powers of notification, registration, quarantine and isolation (Novick, Reference Novick1985; Ford and Quam, Reference Ford and Quam1987; Gostin, Reference Gostin1987, Reference Gostin1989; Frierson and Lippmann, Reference Frierson and Lippmann1989; Bayer and Fairchild-Carrino, Reference Bayer and Fairchild-Carrino1993; Bayer and Healton, Reference Bayer and Healton1989; Cappon et al., Reference Cappon, Adrien, Hankins, Remis and Roy1991; Dickerson, Reference Dickerson1993; McCall, Reference Mccall1993; Forbes, Reference Forbes1996; Hansen and Groce, Reference Hansen and Groce2003; Gorry, Reference Gorry2008; Anderson, Reference Anderson2009; Alan, Reference Alan2012). These measures are, or have been claimed by their proponents to be, in the service of prevention and public health because they serve to identify those who are HIV positive, to deter risky behaviour, and to create barriers between the infected and the non-infected, so limiting onward transmission. They are also the measures which have arguably contributed, more than anything, to the persistent popular ignorance about HIV and the consequent stigmatisation of people living with the virus. Indirectly, the HIV legiscape comprises laws aimed at regulating or outlawing activities and identities associated with a heightened risk of HIV infection and higher than average prevalence. These laws frequently express an explicit moral agenda and exist as a means of enforcing and reinforcing particular cultural and social norms and values. Punitive responses to homosexuality and transgendered people, sex work, and the possession of drugs and associated paraphernalia may not be explicitly concerned with public health and HIV, but – as comprehensive reviews of the research literature for the Global Commission on HIV and the Law show – they are critically important for this analysis because they contribute to an unsafe legal environment in which HIV thrives and multiplies (Beyrer and Baral, Reference Beyrer and Baral2011; Baral et al., Reference Baral, Beyrer and Poteat2011; Chiu and Burris, Reference Chiu and Burris2011; Shah, Reference Shah2011; Sukthankar, Reference Sukthankar2011).

Unsafe law

Law, then, has been and is directly deployed as a means of limiting the spread of HIV, as a prevention tool, and indirectly, as a means of regulating and controlling the behaviours and activities of those who, because of the way in which HIV is transmitted, happen to be most at risk of infection and are more likely than others to be living with the virus. The question that has to be addressed, in more detail, is how, and in what specific ways, these laws are unsafe, because it is only by being clear about this that we can formulate and implement structural interventions that may make such laws safer, so minimising the risk of onward transmission, reducing population prevalence, and combating HIV-related stigma and ignorance.

And ignorance is the obvious starting place, because it is this which has been one of the principal drivers of populist calls for a coercive (and unsafe) response. Thus, in the 1980s, when the language of plague and contagion was still prevalent in media coverage (Watney, Reference Watney1987; Sontag, Reference Sontag1989, Cook and Colby, Reference Cook, Colby, Fee and Fox1992), there were calls in countries across the world for the criminalisation of any activity that posed a transmission risk (consensual or otherwise), for compulsory testing of those in so-called ‘high risk’ groups (Dechau, Reference Dechau1987; Danziger, Reference Danziger1996), for denying entry to foreigners in the absence of a negative test result, for national registries of those who had tested positive, and for indefinite quarantine (Altman, Reference Altman1986, pp. 63–64; Musto, Reference Musto1986). Some went so far as to advocate that PLHIV should be killed to prevent transmission, that they should be tattooed to alert prospective partners – much as vagrants and thieves had been branded with Vs and Ts in the Middle Ages – and (which was even suggested by some physicians and virologists) that they should be permanently sequestered on remote, uninhabited islands as far as possible from the rest of the population (Baldwin, Reference Baldwin2005, pp. 202–05).

These extreme suggestions may have had their origins in misunderstandings about the ways in which HIV is transmitted, and in the degree of risk involved in different kinds of physical contact, but the myths were perpetuated and reinforced by a sensationalist media which found a ready audience for a subject that – while affirming the divide between the culpable and the innocent – legitimated the explicit expression of homophobia, xenophobia and outright racism (Watney, Reference Watney1988). Even more pernicious were the responses of those politicians and governments who, pandering to the fear and ignorance which it was arguably their responsibility to counter, took advantage of popular sentiment to introduce discriminatory and counter-productive legislation. For example, the 1987 Helms Amendment in the United States (reversed in 1992) banned any federal AIDS funding to organisations whose work might be interpreted as promoting homosexuality or condoning injecting drug use (Crimp, Reference Crimp1987, pp. 256–65), while the Local Government Act 1988 followed soon after in England and Wales, with its infamous prohibition on the intentional promotion of homosexuality in maintained schools, or the teaching of the acceptability of homosexuality as a pretended family relationship (Epstein, Reference Epstein2000; Waites, Reference Waites2000).

It is impossible to overestimate the lasting harm that ignorance, and its various drivers, have had over the past thirty years – not only in its contribution to the millions of needless deaths, but to the social and legal environment in which those living with HIV, both in the early years of the epidemic and now, have endured and continue to endure. The following section provides specific, if necessarily selective, examples to illustrate this. They are organised here according to the three elements of the legiscape identified above – the authoritative texts of law and their interpretation, enforcement practices and institutional settings.

Elements of the HIV legiscape

The first element to consider is legislation. The substantive content of law has significant symbolic importance because it articulates the policies of a particular government at a particular time (Sunstein, Reference Sunstein1996). This is particularly true of criminal laws, which very often express, either explicitly or implicitly, those moral values and principles which are considered so important that flouting them justifies state punishment (Feinberg, Reference Feinberg1970). Across the world, countries have – either through HIV-specific laws, or the application and interpretation of existing ones – criminalised non-deliberate, unintentional, HIV transmission and exposure (UNAIDS, 2008; Global Commission on HIV and the Law, 2012). In Texas in 2008, a man was sentenced to thirty-five years in jail – without possibility of parole – because he spat at an arresting police officer, and because his saliva was deemed a deadly weapon (Bernard, Reference Bernard2008). No transmission occurred, nor could it have done. In Michigan, a year later, a man living with HIV was charged under the state's anti-terrorism statute after biting someone in a brawl on the basis that HIV met the criteria for a biological weapon (Heywood, Reference Heywood2009). Unsurprisingly (because it is impossible), no transmission occurred, and it was only after persistent work by his lawyers and lobbying by the American Civil Liberties Union that the charge was dropped (Heywood, Reference Heywood2010).Footnote ⁴ In Norway (a country currently undertaking a comprehensive review of its law in this area), the disclosure of one's status to, and consent to the risk of infection by, a sexual partner does not provide a defence recognised in law, either to transmission or exposure – a fact which means that, logically and grotesquely, a child conceived by a sero-different couple (i.e. where one is HIV positive and the other negative) is the proceeds of crime (Weait, Reference Weait2011).Footnote ⁵ In Western Africa, a Model Law drafted in 2004 that was promulgated in a number of countries in that region in an effort to combat discrimination ended up including, in some of those countries, provisions which criminalised women with HIV who breastfed their babies (Pearshouse, Reference Pearshouse2007).

There is, naturally, disagreement about whether non-intentional HIV transmission or exposure should be a criminal offence (UNAIDS, 2008; Burris and Weait, Reference Burris and Weait2011). However, whatever one's moral position, there are aspects of criminalisation which may be thought unjustifiable, and consequences which are harmful and unsafe. First, there is no conclusive evidence that it deters risk-taking behaviour and may indeed serve to make it more likely (Lazzarini et al., Reference Lazzarini, Bray and Burris2002; Galletly and Pinkerton, Reference Galletly and Pinkerton2006; Burris et al., Reference Burris, Beletsky, Burleson, Case and Lazzarini2007; Dodds et al., Reference Dodds, Bourne and Weait2009). This means that the arguments, sometimes advanced, that criminalisation is justified on public health grounds have no foundation. It is also the case that HIV epidemicsFootnote ⁶ are driven largely by undiagnosed infection (Marks et al., Reference Marks, Crepaz and Janssen2006; Hall et al., Reference Hall, Holtgrave and Maulsby2012), not by people who are diagnosed positive – and criminal law generally only addresses those who know their status because it is concerned not only with agents' actions and their consequences, but with those who may reasonably be treated as having acted in a sufficiently blameworthy way. Second, because criminal law is not generally concerned with evidence of voluntary risk-taking by a complainant (i.e. one who knows and understands the risks associated with unsafe sex, but to whom there has been no explicit disclosure), it undermines the message of shared responsibility for sexual health, which has been and remains a cornerstone of prevention strategy (Dodds, Reference Dodds2005; NAPWA, Reference Cameron and Rule2009). Third, criminalisation may lead people to believe that new partners will explicitly disclose their HIV positive status to avoid liability, leading to a false sense of security and heightened risk-taking. Fourth, prosecutions are frequently based on ignorance and unsound science, and may lead to miscarriages of justice (Pillay et al., Reference Pillay, Rambaut, Geretti and Brown2007; Abecasis et al., Reference Abecasis, Geretti, Albert, Power, Weait and Vandamme2011; UNAIDS, 2011). To sentence someone to an extended period of imprisonment for spitting, when HIV cannot be transmitted this way, is absurd, and to base convictions for transmission on virological analysis that does not meet the criminal standard of proof is wrong and contrary to due process (Bernard et al., Reference Bernard, Azad, Vandamme, Weait and Geretti2007). Fifth, there is evidence that criminalisation complicates in an unhelpful way the relationship between patients and health-care workers (Mykhalovskiy, Reference Mykhalovskiy2011; Dodds et al., Reference Dodds, Weait, Bourne, Egede, Jessup and Weatherburn2013). Finally, criminal cases more often than not lead to lurid, inaccurate and sensationalist reporting in the popular media – more often than not, these days, the only kind of reporting there is about HIV – and give the impression that people living with the virus are ‘monsters’, ‘murderers’ and ‘assassins’ bent on harming and killing others (Shevory, Reference Shevory2004; Persson and Newman, Reference Persson and Newman2008). Nothing, of course, could be further from the truth but these stories reinforce the stigma and fear surrounding HIV. This does absolutely nothing to encourage people to test regularly and to know their status – a precondition for accessing treatment, and so guaranteeing their own health and reducing the risk of onward transmission to others (see further below).

Legislation and its interpretation are symbolically powerful, and may have unsafe consequences. The same is true of law enforcement practices. The clearest, and epidemiologically most important, example of this concerns injection drug users (IDUs). Globally, it has been estimated that somewhere in the region of 10 per cent of new HIV infections results from the shared use of syringes – a figure which is nearer one in three if sub-Saharan Africa is excluded. In some countries, especially those of Eastern Europe and South-East Asia, between 50 per cent and 80 per cent of HIV prevalence is attributable to the transmission of HIV through injecting drug use (Mathers et al., Reference Mathers, Degenhardt, Phillips, Wiessing, Hickman, Strathdee, Wodak, Panda, Tyndall, Toufik and Mattick2008). Of course, there are social and cultural, as well as personal, reasons why people might choose to share syringes – even if they are aware of the health risks associated with doing so. However, there is substantial empirical evidence that it is law itself which is one of the most significant drivers of HIV among drug users. This is because laws which criminalise the possession of drugs and drug paraphernalia create an environment in which users adapt their behaviour in ways that increase risk of transmitting and acquiring HIV and other blood-borne viruses. To avoid detection and arrest they may, for example, avoid carrying their own syringes and inject in shooting galleries where shared syringe use is more common, or they may feel the need to inject more quickly, which can result in inadequate disinfection of those syringes, even where the means of such disinfection exist (Chiu and Burris, Reference Chiu and Burris2011). Even where the possession of syringes is legal, research shows that police – who will typically see all drug users as potential thieves and threats to public order – will still confiscate them. There is also evidence from many countries with high IDU HIV prevalence that where police disrupt lawful syringe exchange and opioid substitution programmes, and harass service users and providers, uptake of these safer alternatives is significantly reduced. Not only does this increase immediate HIV risk, it hinders access to other health and support services – something which is also well documented in the context of men who have sex with men in countries, especially in parts of Asia and Africa, where homosexual activity is illegal, or subject to particular social and cultural disapproval (Mahon, Reference Mahon, Clapham, Robinson, Mahon and Jerbi2009; Fay et al., Reference Fay, Baral, Trapence, Motimedi, Umar, Iipinge, Dausab, Wirtz and Beyrer2011). Nor is it only IDUs whose HIV risk and general health is put at risk by punitive laws and their enforcement. Across the globe, sex workers are deterred from carrying condoms – the very protection that health advisers suggest, and which are distributed precisely to minimise risk – because these are frequently used as the basis for their arrest and harassment by the police and as evidence in criminal prosecutions against them (Shannon and Csete, Reference Shannon and Csete2010; Open Society Foundations, 2012).

The harmful effects of law are similarly apparent in its institutional manifestations. Across the world, HIV prevalence tends to be high in prisons, and higher there than in the general population. It has been estimated, for example, that up to 25 per cent of people in the US living with HIV have passed through its correctional system, that in many low- and middle-income countries (especially those in Eastern Europe) rates of infection are significantly higher than average (Dolan et al., Reference Dolan, Kite, Black, Aceijas and Stimson2007), and in South Africa the HIV prevalence in prison has been estimated at 41 per cent, more than double that of the general population in that country (Jürgens et al., Reference Jürgens, Ball and Verster2009). There are two main reasons for this increased prevalence. First, members of populations with heightened vulnerability to HIV infection (such as sex workers and drug users) have – as a result of the enforcement practices outlined above – an increased probability of incarceration. A recent international review showed that between 56 per cent and 90 per cent of people who inject drugs have been imprisoned globally (Jürgens et al., Reference Jürgens, Nowak and Day2011). Second, injecting drug use – a highly efficient mode of transmission – along with tattooing and sexual activity (both consensual and otherwise), are commonplace in carceral settings, and as research conducted in the UK and elsewhere has shown, sharing needles and syringes is far from unusual (Turnbull et al., Reference Turnbull, Dolan and Stimson1993; Yirrel et al., Reference Yirrell, Robertson, Goldberg, Mcmenamin, Cameron and Leigh Brown1997; Case et al., Reference Case, Meehan and Jones1998). These factors – high HIV rates on entry to prison, combined with high-risk activity once inside – combine to create an environment that fosters HIV risk and transmission (Freudenberg, Reference Freudenberg2011; Chen et al., Reference Chen, Ko, Lee, Hsu and Ko2008). In many countries prisoners have inadequate access to either prevention information or equipment (such as clean syringes, substitution therapies or condoms; see, e.g., Elliott, Reference Elliott2007) that can reduce or eliminate risk, and this has led to a number of well-documented outbreaks, both of HIV and other blood-borne and sexually transmitted infections (Caplinskiene et al., Reference Caplinskiene, Caplinskas and Griskevicius2003; Reid et al., Reference Reid, Topp, Turnbull, Hatwiinda, Harris, Maggard, Roberts, Krüüner, Morse, Kapata, Chisela and Henostroza2012). And of course, because most prisoners are eventually released, the spread of HIV within the institution creates the potential for further infections in the wider community.

Excursus: the impact of law on HIV testing

The benefits and importance of timely intervention (i.e. as soon as possible after infection) have been extensively documented (Gilbart et al., Reference Gilbart, Dougan, Sinka and Evans2006; Girardi et al., Reference Girardi, Sabin and Monforte2007; Valdiserri, Reference Valdiserri2007; Coenen et al., Reference Coenen, Lundgren, Lazarus and Matic2008; Daniels, Reference Daniels2008; Hamers and Phillips, Reference Hamers and Phillips2008; Brown et al., Reference Brown, Hunter, Kall and Delpech2010). Not only does it provide diagnosed individuals with the opportunity for care and treatment (and hence increased life expectancy; Bhaskaran et al., Reference Bhaskaran, Hamouda, Sannes, Boufassa, Johnson, Lambert and Porter2008), it generally results in a reduction in high-risk sexual behaviour (Marks et al., Reference Marks, Crepaz, Senterfitt and Janssen2005) and, where viral load is reduced through use of ART following diagnosis, a reduction in the risk of onward transmission (Cu-Uvin et al., Reference Cu-Uvin, Caliendo, Reinert, Chang, Juliano-Remollino, Flanigan, Mayer and Carpenter2000; Fang et al., Reference Fang, Hsu, Twu, Chen, Chang, Hwang, Wang and Chuang2004; Castilla et al., Reference Castilla, Del romero, Hernando, Marincovich, Garcia and Rodriguez2005). The converse is the case where people are diagnosed late in the course of their infection (Fisher, Reference Fisher2008; Adler et al., Reference Adler, Mounier-Jack and Coker2009). Increased immunosuppression means they are likely to present with AIDS-defining conditions, or to develop one of these relatively soon after diagnosis (Sabin et al., Reference Sabin, Smith, Gumley, Murphy, Lampe, Phillips, Prinz, Youle and Johnson2004). They are also more susceptible to opportunistic infections (Hocking et al., Reference Hocking, Rodger, Rhodes and Crofts2000) and experience higher mortality (Castilla et al., Reference Castilla, Del romero, Hernando, Marincovich, Garcia and Rodriguez2005; Chadborn et al., Reference Chadborn, Baster, Delpech, Sabin, Sinka, Rice and Evans2005, Reference Chadborn, Delpech, Sabin, Sinka and Evans2006). Furthermore, because HIV rates have stayed relatively stable in countries where ART is available and accessible, and have in some cases increased, it follows that remaining undiagnosed is positively correlated with the risk of onward transmission and contributes to the spread of the epidemic in the industrialised world (Calzavara et al., Reference Calzavara, Burchell, Major, Remis, Corey, Myers, Millson and Wallace2002; Dukers et al., Reference Dukers, Spaargaren, Geskus, Beijnen, Coutinho and Fennema2002; Katz et al., Reference Katz, Schwarcz, Kellogg, Klausner, Dilley, Gibson and Mcfarland2002; Marks et al., Reference Marks, Crepaz and Janssen2006).

Given that the benefits of early diagnosis are substantial where ART is available to diagnosed individuals and the population as a whole, it is important to understand the factors associated with, and barriers to, earlier testing and diagnosis, and to identify ways in which these may be addressed effectively. As for factors associated with presenting late HIV, these include being a person who is not identified as being at particular risk of HIV infection, or does not self-identify as such, a person who is not routinely or actively offered HIV testing (such as a non-pregnant woman), or being a person who is a member of a socially marginalised population (Girardi et al., Reference Girardi, Sabin and Monforte2007). Being older, or born in a country other than the one in which one is resident (ECDC 2009), are also factors positively correlated with late presentation. In contrast, men who have sex with men (MSM) and injection drug users tend to present late less commonly (Girardi et al., Reference Girardi, Aloisi, Arici, Pezzotti, Serraino, Balzano, Vigevani, Alberici, Ursitti, D'Alessandro, D'Arminio Monforte and Ippolito2004; Sabin et al., Reference Sabin, Smith, Gumley, Murphy, Lampe, Phillips, Prinz, Youle and Johnson2004).

While this research is valuable at a macro-level, and provides assistance in identifying groups and populations where new testing initiatives might beneficially be developed and targeted, it is important to emphasise that the factors correlated with late presentation are not the same as the psychological, sociocultural and legal barriers that impede, or sustain disincentives to, testing for particular individuals – whether or not they are at high risk of HIV infection. Understanding these, and recognising the part that they play in late presentation (especially among those at high risk of infection) is just as important, if not more so. The research into such barriers is, arguably, less systematic, less extensive and less conclusive than that concerned with late presentation factors at a population level (De Wit and Adam, Reference De wit and Adam2008). Nevertheless, there is evidence to suggest that the stigma surrounding HIV infection, and concerns about the consequent social and psychological costs of a positive diagnosis, including discrimination, do play a part in the decision-making of some people living with HIV not to discover this fact at the earliest possible opportunity (Fortenberry et al., Reference Fortenberry, Mcfarlane, Bleakley, Bull, Fishbein, Grimley, Malotte and Stoner2002; Mwamburi et al., Reference Mwamburi, Dladla, Qwana and Lurie2005; Balabanova et al., Reference Balabanova, Coker, Atun and Drobniewski2006; Fakoya et al., Reference Fakoya, Reynolds, Caswell and Shiripinda2008; Gardezi et al., Reference Gardezi, Calzavara, Husbands, Tharao, Lawson, Myers, Pancham, George, Remis, Willms, Mcgee and Adebajo2008; Genberg et al., Reference Genberg, Kawichai, Chingono, Sendah, Chariyalertsak, Konda and Celentano2008, Reference Genberg, Hlavka, Konda, Maman, Chariyalertsak, Chingono, Mbwambo, Modiba, Van Rooyen and Celentano2009; Meiberg et al., Reference Meiberg, Bos, Onya and Schaalma2008; Bokhour et al., Reference Bokhour, Solomon, Knapp, Asch and Gifford2009; Maman et al., Reference Maman, Abler, Parker, Lane, Chirowodza, Ntogwisangu, Srirak, Modiba, Murima and Fritz2009; Nanin et al., Reference Nanin, Osubu, Walker, Powell, Powell and Parsons2009; Oransky et al., Reference Oransky, Fisher, Mahadevan and Singer2009; Wisaksana et al., Reference Wisaksana, Alisjahbana, Van Crevel, Kesumah, Sudjana and Sumantri2009). No less important is the finding that disclosure of HIV status to partners (which although not necessarily correlated with practising safer sex, is typically relevant to criminal liability for exposure and transmission) is also made harder where HIV is stigmatised and discrimination exists (Clark et al., Reference Clark, Lindner, Armistead and Austin2003; Yang et al., Reference Yang, Li, Stanton, Fang, Lin and Naar-King2006; Calin et al., Reference Calin, Green, Hetherton and Brook2007; Paparini et al., Reference Paparini, Doyal and Anderson2008; Dowshen et al., Reference Dowshen, Binns and Garofalo2009; Michaud et al., Reference Michaud, Suris, Thomas, Kahlert, Rudin and Cheseaux2009; Valle and Levy, Reference Valle and Levy2009).

What is less clear is the precise nature of the relationship between stigma and discrimination (understood in this context as negative differential treatment on the basis of real or perceived HIV status) and decisions to test or, having tested positive, to disclose status to partners who may be exposed to the risk of infection (Brown et al., Reference Brown, Macintyre and Trujillo2003). And because the nature of this relationship is complex, it is even harder to assert confidently a direct causal relationship between those things which contribute to stigma and delaying testing (or choosing not to test) and non-disclosure following a positive diagnosis. When many PLHIV already experience multi-layered and intersecting forms of stigma and discrimination because of their existing membership of, or association with, marginalised, economically deprived and/or vulnerable populations and communities (such as MSM, IDUs, migrants, ethnic minorities, sex workers, and women and girls), isolating the exact contribution of HIV-related stigma is exceptionally difficult, if not impossible.

The difficulty of proving a direct causal relationship between stigma and delayed testing and late presentation does not, however, mean that there exists no legitimate foundation or arguable case for challenging and removing those barriers which either contribute indirectly to adverse health outcomes for PLHIV and the wider population, or do nothing positive to ameliorate these. At the United Nations General Assembly in 2001, states party to the International Covenant on Economic, Social and Cultural Rights declared a commitment to ‘enact, strengthen or enforce, as appropriate, legislation, regulations and other measures to eliminate all forms of discrimination against and to ensure the full enjoyment of all human rights and fundamental freedoms by people living with HIV/AIDS and members of vulnerable groups’ (UNGASS, 2001). The importance of this commitment, and the reasons for its adoption, are essentially two-fold.

First, there exists widespread consensus that stigma is reinforced through, among other things, discriminatory laws and law enforcement (UNAIDS, 2005). Despite evidence to this effect, countries across the world persist – as we have seen – in the enforcement of discriminatory and punitive laws, and in introducing new ones. In addition to the coercive legal responses described above, there is also evidence of discrimination against PLHIV in employment and in access to health care (Weatherburn et al., Reference Weatherburn, Keogh, Dodds, Hickson and Henderson2007), and isolation of, and denial of treatment to, PLHIV in custodial settings, such as prisons and immigration detention centres (Burnett et al., Reference Burnett, Fessahaye and Stopes2011). As we have seen, none of these measures and practices has been shown to contribute to reducing the spread of HIV, and some do, or have the potential to do, precisely the opposite. For example, where homosexuality is criminalised, MSM may not be frank when discussing their sex lives with health workers, and may put any female partners they may have at risk of infection by not taking precautions (Montgomery et al., Reference Montgomery, Mokotoff, Gentry and Blair2003); and there is indirect evidence that low self-esteem (reinforced by the criminalisation of homosexuality) may increase sexual risk-taking (Roehr Reference Roehr2010; Kelly, Reference Kelly and Murphy1991; Kelly et al., Reference Kelly, Kalichman, Kauth, Kilgore, Hood, Campos, Rao, Brasfield and St Lawrence1991a, Reference Kelly, St Lawrence and Brasfield1991b; Ross and Rosser Reference Ross and Rosser1996; Stokes and Peterson, Reference Stokes and Peterson1998; Diaz et al., Reference Diaz, Ayala, Bein, Henne and Marin2001; Huebner et al., Reference Huebner, Davis, Nemeroff and Aiken2002). Similarly, where discrimination on grounds of HIV status is not unlawful, employers and service providers have no incentive to understand or accommodate the particular needs of PLHIV, or to ensure that their rights to fair and equal treatment are respected.

The second reason for challenging and removing barriers and obstacles to earlier testing and diagnosis is that the abuses and practices identified above, to the extent that they reinforce stigma and perpetuate discrimination, constitute violations of human rights, and in particular the fundamental right to non-discrimination. Below, some of the immanent limitations in using human rights arguments instrumentally to make law safer are addressed; however, it has long been recognised that the spread of HIV has, in part, been driven by a failure to respect human rights (Mann et al., Reference Mann, Gostin, Gruskin, Brennan, Lazzarini and Fineberg1994, Reference Mann1995, Reference Mann1996, Reference Mann1998; Csete, Reference Csete2005; Csete and Elliott, Reference Csete and Elliott2006). Laws, policies and enforcement practices that either allow, or fail adequately to combat, the principle of non-discrimination articulated in the Universal Declaration of Human Rights, and restated in subsequent international treaties and conventions, including the Charter of Fundamental Rights of the European Union and the European Convention on Human Rights, sustain stigma and prejudice and render more vulnerable both PLHIV and those populations most at risk of infection. Respect for human rights, understood as their practical realisation through national and international law, is therefore critical in local, national, regional and international efforts to limit the spread of HIV (UNAIDS 1998/2006; UNAIDS/IPU 1999; UNAIDS 2005) (though see the caveat discussed below); and this is the case irrespective of whether there exists (or could ever be proven to exist) conclusive scientific ‘proof’ that stigma and its causes result in delays in HIV testing or decisions not to test.

Making law safer

These examples of the direct and indirect dimensions of the HIV legiscape illustrate how law is implicated in the spread of HIV. In many significant respects it is properly characterised as unsafe. How, then, are we to make it safer? In addressing this question, it is necessary to consider the broader question of why it is that law might be having these effects, and this in turn demands reflection on what we use law for, and what we can hope realistically to achieve through the use of law.

As suggested earlier, law has both symbolic and instrumental dimensions. It reflects the dominant cultural, political and economic values that exist at a particular time and the interests and concerns of those with legislative power. It also serves as a mechanism for the realisation of those values. It does this through the formulation of binding rules of conduct; the provision of procedures, personnel and institutions for adjudication in the event of dispute or alleged violation; and by creating and enforcing civil sanctions or punishment where such rules are broken. With the aid of this complex structure, society seeks to achieve a number of things – among which the most significant are order and security. Whether the laws in a particular country at a particular time will deploy coercive legal measures to achieve those ends will depend on a number of factors. These include the extent to which it abides by democratic principles, its willingness to be bound by, and honour, supranational legal obligations, and its commitment both in principle and in practice to the promotion and protection of fundamental human rights. It will also depend on whether it is faced with a novel threat that it does not understand, and against which existing technical and scientific understanding and capacity are of limited or restricted use. HIV, not unlike terrorism in this respect, is such a threat. And because HIV is only ever embodied, those human beings living with the virus, or who fall into epidemiologically significant categories for the acquisition and transmission of the virus are – by virtue of that fact alone – legitimately subject to the full force of law. As the source and conduits of a threat to humanity itself, their democratic and human rights are suspect and thus compromised. Those who are HIV negative are entitled to remain that way, and law is seen as a powerful mechanism for ensuring that. Just as condoms have proven such an effective means of preventing the transmission of HIV from person to person, because they are made from latex – an elastic, impermeable, material – so legal measures have been deployed, either directly against those who are HIV positive or indirectly, as a response to those whose behaviour happens to put them at heightened risk of infection. The problem is that whereas latex has the ability to protect, lawtex – by which is meant the material manifestation of law through its texts, enforcement and institutions – has the capacity to do the converse. Far from ensuring an effective barrier against HIV, lawtex has qualities which enhance HIV risk and may indeed serve to make combating HIV more difficult. Without properly understanding its properties and limitations, covering ourselves with lawtex in the belief that it will provide protection – whether against HIV infection or HIV-related stigma – is fundamentally misconceived. To adapt the title of the famous Hans Christian Andersen tale, lawtex is the Emperor's New Condom.

It follows from what I have suggested that if we are to make a difference it is important, like the little boy in that story, to be fearlessly honest and find effective ways of confronting the Emperor with his nakedness. More than that, we need to find a way of convincing the Emperor that it is he who is wrong and misguided – and to provide him with clothes that are more than merely chimerical. In the story, it will be recalled, he was too proud and too vain to admit the truth, and preferred to continue in his procession under the illusion that those who could not see he was dressed were either stupid or incompetent. In the battle against HIV that is not an option, but the question remains: How best to do this? The following are suggestions for approaches that are both currently making, and which could make, a real difference.

First, it is important to re-emphasise that law is a structural determinant of health – just as the mobilisation of affected communities and the integration and mainstreaming of HIV services discussed earlier are. As I have argued, punitive law is profoundly implicated in the spread of HIV, not only directly (through measures which heighten the risk of transmission and acquisition), but indirectly (through measures which reinforce fear and ignorance, contribute to HIV-related stigma, and may thus impact on testing and access to treatment). This is a rather different point from that made since the early days of the epidemic – which is that the promotion and protection of human rights is critical for an effective HIV response. That argument, first made by the pioneering scholar and activist Jonathan Mann (Mann, Reference Mann1995, Reference Mann1996, Reference Mann1998), is now universally accepted and finds expression in almost all initiatives concerned with ensuring an effective HIV and AIDS response. Most importantly, it forms the basis for one of the key documents in the field – the UN International Guidelines on HIV/AIDS and Human Rights (UNAIDS, 1998/2006).

It is incontrovertible that human rights should be central to the HIV response: their discursive power, and their articulation of the legitimate limits of a state's entitlement to intrude into the lives of its citizens, are critically important in framing the approach taken to prevention and treatment and affirming the common humanity of all people, whether positive or negative. However, human rights are of limited use in achieving change unless and until they find expression in binding national and international law and are observed in practice: unless, and until, they are both realised and accessible. And even when, as in the UK, there does exist a binding obligation to respect human rights, their capacity to deliver is limited. For example, the UK has incorporated the European Convention on Human Rights into its domestic law through the Human Rights Act 1998. Among other things, the Convention contains the right, in Article 3, to be free from inhuman and degrading treatment and from torture. This right was tested in the context of HIV in a caseFootnote ⁷ in which a woman from Uganda had sought asylum in the UK after being raped by members of the Lord's Resistance Army. She discovered her HIV positive status on arrival, and was very sick. She was placed on treatment (for which asylum seekers were eligible pending their application) and recovered her health. She subsequently failed in her asylum claim, and was ordered to be deported. She appealed against that decision on the basis that, among other things, the treatment for HIV that had made her well was not available in Uganda, that she would become ill again and that to deport her would thus amount to inhuman and degrading treatment. As to that claim, Lord Nicholls – who gave the leading opinion – agreed. He stated:

One might have thought that if anything might constitute inhuman and degrading treatment, sending someone home to die would; but the House of Lords' interpretation of the Strasbourg jurisprudence allowed their Lordships – unanimously – to conclude otherwise. N lost her appeal, and lost again when the case came before the European Court of Human Rights;Footnote ⁹ and this despite the following finding of fact by that Court:

Article 3 would only be violated in cases of this kind where a person was terminally ill at the time of intended deportation. The state – in this case the UK, but it could be any other country bound by the Convention – was entitled to determine who should be permitted to remain in the territory, and N did not satisfy the jurisprudentially defined criterion of imminent demise. Had treatment been unavailable or denied so that at the time of her appeal she was at death's door, the decision would have been different; but the very beneficence of the state that had restored her health was, paradoxically, to be the basis upon which, by the judges' own admissions, that health could once again be allowed to deteriorate and her death come sooner than it otherwise would.

The problem with human rights that this case exemplifies is that their instantiation in law typically provides states with a wide margin of appreciation, which is to say they retain significant discretion in matters such as residency, public order, national security, criminal justice and – paradoxically in this context – public health (Palmer, Reference Palmer2006; Mowbray, Reference Mowbray2010). What this means is that a state might both adhere technically to human rights standards as these have been interpreted by the courts (though it should be noted that Section 2 of the Human Rights Act 1998 requires merely that in matters of legislative interpretation a domestic court must merely ‘take into account’ convention jurisprudence – it is not binding precedent) and yet at the same time reach decisions which impact negatively on people living with HIV and on prevention efforts. One might be able to demonstrate, for example, that the criminalisation of drug possession, and the incarceration of drug users, contributes to the spread of HIV, or that the criminalisation of non-intentional exposure and transmission reinforces HIV-related stigma and may result in a false sense of security for those entering into sexual relationships, but a human rights based argument for decriminalisation is unlikely to succeed. Different, but analogous, problems arise in the context of social and economic rights, such as the right to the highest attainable standard of health, which though subscribed to by many countries, are typically not as often embedded in enforceable laws as are civil and political rights, or treated as justiciable by the courts (Gearty and Mantouvalou, Reference Gearty and Mantouvalou2010).

The difficulty is that if the benchmark against which one evaluates a country's HIV response is whether it complies with international human rights law, we may find that it does and yet that it still pursues policies which are contrary to the best available evidence as far as promoting public health and HIV prevention is concerned. What is necessary is to benchmark national laws not just against human rights (something that the United Nations has undertaken for many years; Watchirs, Reference Watchirs2002, Reference Watchirs2003), but explicitly against relevant public health criteria. In reviewing existing legislation and policies, as well as when considering the introduction of new ones, for governments and those involved in their implementation, it is important to undertake not only human rights audits and economic impact assessments, but evaluations of their potential impact on public health generally, and on HIV in particular. That this is feasible and possible is evidenced by recent policy development in the UK. Until 2012, failed asylum seekers (such as the Appellant in N) and undocumented migrants were ineligible for free HIV treatment.Footnote ¹¹ As a result of lobbying by the National AIDS Trust, clinicians, and others and – critically – in response to evidence showing that treatment lowers viral load and so reduces infectiousness (Cohen et al., Reference Cohen, Chen, Mccauley, Gamble, Hosseinipour, Kumarasamy, Hakim, Kumwenda, Grinsztejn, Pilotto, Godbole, Mehendale, Chariyalertsak, Santos, Mayer, Hoffman, Eshleman, Piwowar-Manning, Wang, Makhema, Mills, De bruyn, Sanne, Eron, Gallant, Havlir, Swindells, Ribaudo, Elharrar, Burns, Taha, Nielsen-Saines, Celentano, Essex, Fleming and Team2011), the government has, from October 2012, amended the NHS charging regulations so as to provide for free HIV treatment irrespective of a person's residency statusFootnote ¹² (Department of Health, 2012; Pebody, Reference Pebody2012). This is an important development because it acknowledges that it is in the public interest that people who are in fact living with HIV are treated, and any immediate cost to the public purse is outweighed by the longer-term benefits. It may be that in making this policy change, the UK has done something which is consistent with promoting the right to the highest attainable standard of health, but that is – in some sense – incidental to the fact that it has taken on board the best available evidence and acted accordingly.

The second way in which it should be possible to make a difference is to pursue both long-term goals and short-term wins, to adopt an approach that is both principled and pragmatic, and to ensure that attention is paid to each and every element of the legiscape. Making law safer can, and should, involve repealing harmful laws (judged against the criteria outlined above) and the introduction of new ones that provide real protection for people living with HIV and for those at heightened risk of infection (such as effective anti-discrimination legislation and guaranteed access to the legal services necessary to ensure its enforcement). The problem with legislative repeal is that it is a costly, long-term, project even when there is popular support and a will on the part of government and politicians to see such repeal through. And when arguments for reform do not have popular support – despite the available evidence that it will, or may, reap benefits – they are extremely unlikely to be taken up. It might, for example, be possible to argue that the criminalisation of non-deliberate HIV exposure and transmission does nothing to actively encourage people to find out their status, or that the criminalisation of drug possession is associated with heightened risk of acquisition and transmission; but it would a brave political party that put the repeal of such laws in its manifesto, and a brave politician who spoke out publicly in support of such measures. This is not to say that it is impossible. Portugal, which in 1999 had the highest rate of HIV infection among injecting drug users in the EU, decriminalised in 2000 the use, possession and acquisition of all types of drugs for personal use, which was defined as being up to ten days' supply. The number of notifications of new diagnoses of HIV related to drug addiction fell from 1,430 in 2000 to 352 in 2008 (Vale de Andrade and Caparinha, Reference Vale de Andrade and Caparinha2010). But Portugal is exceptional, and faced an exceptional threat. We cannot expect, realistically, governments in countries with relatively low HIV prevalence among drug users to act proactively on this matter – however much we might want them to – and nor can we expect countries with poor records of, and a lack of commitment to, the principles of harm reduction to do so. Morality, traditional values and ignorance combined with a stubborn resistance to international guidance and pressure, even when supported by evidence, mean that it will be the minority of governments that bite the bullet and engage in wholesale legislative repeal.

It is, however, possible to intervene and make a difference in the spaces which existing laws leave open, especially in the area of enforcement and institutional settings. For example, in the context of HIV criminalisation, the Crown Prosecution Service for England and Wales has produced guidanceFootnote ¹³ that sets out a number of factors that should be taken into account when deciding whether to prosecute someone for the transmission of sexually transmitted infection, including HIV (similar initiatives are being developed in Canada; Ontario Working Group on Criminal Law & HIV Exposure, 2011). This guidance makes clear that scientific evidence cannot, on its own, prove that a defendant transmitted HIV to the complainant and that where transmission has occurred despite the appropriate use of condoms, it is unlikely that recklessness will be proven. Although it is impossible to determine the precise extent to which the guidance has reduced the number of prosecutions, there is anecdotal evidence from those involved in advocacy and support that it has done so – thereby reducing the number of people that might otherwise be wrongly convicted, and the attendant sensationalist and stigmatising headlines that accompany these cases. Similarly, the Terrence Higgins Trust (Terrence Higgins Trust, 2009) and the National AIDS TrustFootnote ¹⁴ have worked with the police to educate and train them about HIV, which it is hoped will have the effect of reducing the number of unjustified and upsetting investigations which have to date resulted from allegations. And just as it is possible to work within existing law to reduce the harms associated with the criminalisation of transmission, so it is in the context of drug use and sex work. Decriminalisation in these areas is complex and contentious, and has far from universal support; but whatever one's position is, much can be done to reduce the risk of HIV-related harm and make the laws which do exist safer. Thus, there should be support and lobbying for changes in laws that treat the possession of condoms as evidence of commercial sex work, or of syringes as evidence of drug possession and use, and it is necessary to educate and ensure the effective accountability of the police who harass, victimise and make the arrests of drug users and sex workers on that basis.Footnote ¹⁵ Similarly, where harm reduction facilities are unavailable or practically inaccessible in prisons and other settings where people are at heightened risk of infection, these should be made available and accessible. There is, as indicated, strong evidence that these interventions work, and ways have to be found of introducing and/or scaling them up wherever possible. Moral opprobrium and zero tolerance may satisfy the righteous; but it is positively harmful in the fight against HIV. If delighting in sanctimonious judgment at the cost of other people's lives is not immoral, it is hard to know what it is.

Delivering change: obstacles and opportunities

The previous section set out what needs to change, and the kinds of intervention that are necessary and possible to achieve that change. It is necessary, finally, to offer some observations about the way in which we go about delivering that change. Over the past thirty years there have been countless policy consultations, declarations, recommendations and initiatives at the national and international level that have emphasised the importance of combating HIV and AIDS, and over the past twenty or so – with even greater urgency in recent years – there has been an increasing emphasis on the directly and indirectly harmful effects of law on the effectiveness of response.

It has, however, been an uphill struggle for two reasons. First, the very presence of a law provides a kind of self-fulfilling justification for its continued existence. Even if the law in question was never introduced to respond to HIV (as is the case with any prior to the early 1980s, including much criminal legislation), and could not have anticipated HIV (and is thus not fit for purpose when confronted with HIV), it is extremely hard to convince legislators of the need for repeal. Where it has been possible is where there is hard, verifiable, evidence of its harmful effects or of the benefits of a new approach (as we saw with the Portuguese drug laws and the NHS charging regulations), and even here it is not always sufficient (as where reform would have little or no public support on ethical or moral grounds). Even where laws have been enacted, enforced and interpreted without any evidence base, those who have argued for change are charged with the evidential burden of proving that the change will make a difference. And this, of course, is extremely difficult. Not only because it is hard to show that the absence of something would be less harmful than the existence of something that does harm, but because even where this is possible, empirical research of the kind that policy-makers like is time-consuming, costly and resource intensive. Arguments for reform can be made based on principle, but these are weaker and less effective. There is almost always another equally defensible position when it comes to arguments from first principles; and where human rights are concerned, the latitude accorded states in matters of securing the national interest means that arguments based on these are far from certain to succeed.

The second, related, reason why reform has been an uphill struggle is that the HIV policy community has not, arguably, fully recognised the importance of making the strongest case using the best evidence, the most appropriate advocates, at the optimal time, to the most receptive and relevant audience. Few, if any, of the consultations and summits in which this author has participated have drawn on the expertise of political communications specialists. Instead, they have typically involved subject experts who, by and large, agree with each other. We may have drawn up papers and formulated policy recommendations that are sound, well-reasoned and convincing – but we have generally not thought as carefully as we should about how to frame or communicate those recommendations bearing in mind who is in a position to act on what, when and how. If a consultant virologist or epidemiologist tells the Minister that the criminalisation of HIV exposure has no positive public health benefits, and may be harmful in prevention efforts, that message will be heard as an assertion grounded in expert knowledge, whereas a passionate gay activist making exactly the same point risks being heard as someone calling for the right to have unprotected sex.Footnote ¹⁶

These somewhat critical observations should not, it should be emphasised, detract from the very significant contributions to policy debate that are being made across the world – an increasing number of which reflect an awareness of the importance of a strong evidence base. The Global Commission on HIV and the Law, which reported in 2012 (Global Commission on HIV and the Law, 2012), recognised the need to move beyond merely principled arguments. The Commission included those with practical and professional experience of law, medicine and politics and was committed to ensuring that its recommendations were grounded in as wide and as thorough an evidence base as possible. To that end it undertook regional dialogues across the world, drawing on and documenting the lived experience and testimony of PLHIV and representatives of groups at heightened risk of infection. It also ensured that its deliberations were informed by comprehensive reviews undertaken by subject experts. UNAIDS, which since the late 1990s has drawn attention to the potentially adverse effects of criminalising non-deliberate HIV transmission and exposure (UNAIDS, 1998/2006, 2008), has undertaken a comprehensive review of the inter-relationship between science and law in this area (UNAIDS, 2011, 2013). Add to this the campaigns of the International Planned Parenthood Federation, the research and policy undertaken by the Global Network of People Living with HIV, the International Community of Women living with HIV, and the Canadian HIV/AIDS Legal Network, and the initiatives of the Open Society Foundations, the HIV Justice Network and others working nationally, regionally and internationally, and it will be recognised that there is developing, alongside academic research, a critical mass of expert evidence which can only serve to support the arguments of those who wish only to ‘speak truth to power’.

HIV, law and scholarship: beyond the comfort zone

The intention of this article has been to highlight the ways in which, in the fight against HIV and in assuring respect for PLHIV and those at risk of HIV infection, law has in many important respects been an obstacle, but that it is an obstacle that can be overcome – especially, and most urgently, through the repeal of punitive laws impacting on people at heightened risk of infection and the decriminalisation of anything other than deliberate, purposeful, transmission. To achieve the changes that are necessary it is vital that lawyers, both practising and academic, recognise – and make use of – scholarship and research beyond their own discipline. HIV and AIDS are not legal problems, capable of resolution simply through the application of rules, principles or doctrine; they are a public health threat that must be countered using what we know about its modes of transmission and its vulnerabilities. Its potential or realised embodiment in human beings has resulted in an elision of the virus's purely physical properties with the moral qualities of those human beings. Over the past three decades HIV has undergone a process of juridification, nurtured and sustained in a punitive legal environment concerned more with blame, judgment and control than with facilitating, through constructive engagement with the expertise of other disciplines, an end to the epidemic. As I have attempted to show here, by making substantial use of research undertaken beyond the legal academy, it is possible – and I would argue essential – that this is redressed. Legal scholarship and research can, should and must acknowledge the importance and value of properly trans-disciplinary collaboration, thereby reaching those who are in a position to make a difference.

It is also important to recognise the importance and intellectual value of activist and policy engagement in this area, however problematic this is. This paper has been concerned primarily with substantive matters, but academic analysis of substance in this field is a barren project unless there is a complementary focus and reflection on the purpose of that analysis and its application.Footnote ¹⁷ Academics tend to value their intellectual independence highly, and legal academics are no different. One cannot do activism without engaging with others, because it is only by learning to understand the subject that interests you through the lives and experiences of others that you develop critical reflexivity. Collaboration is therefore essential, and enriching, but one has to be mindful of the fact that one's agenda is not necessarily that of others. The realpolitik of policy development in international agencies such as the WHO and UNAIDS can be frustrating to those not used to making arguments in environments where political sensitivity is frequently, if unfortunately, necessary. To be a scholar-activist means finding the narrow line between being true to one's ideals and biting the bullet of compromise. It means both holding on and letting go, or in Ian Maxey's words ‘doing as much as I can from where I am at’ (Maxey, Reference Maxey1999, p. 201).

Finally, it is essential to recognise that effective and satisfying activist research and scholarship requires being sensitive both to the privileged position that being an academic affords, and to the standpoint from which academics investigate the world and the effects of this. If one of the liberatory and progressive benefits of such work is a commitment to treating those being studied as subjects rather than objects, then this means ensuring, so far as possible, that we recognise our own role in framing the debates we enter into and the questions that we pose. As Dorothy Smith, one of the founders of institutional ethnographic research, has said:

It is hard to disagree with this. Salaried academics in research-intensive universities have the freedom (limited, of course, by the exigencies of teaching and administration) both to think and to do. The temptation to assume that we know what needs to be researched and how that research should be done and communicated is hard to resist because of learned professional identity. But we have to accept that while it is right and proper to stick to our intellectual guns, it is only possible to contribute to social change if time is taken to examine closely the connections between our research and that identity.

This important point has been helpfully elaborated by two academics who have addressed the relationship between academia and activism, and who seem to me to provide great insight into how research into HIV in its legal context should be approached. First, Frank Munger:

At a time of global economic recession, when funding for legal aid and civil society work in the field of HIV is being cut and the need for access to justice greater than ever, Munger's words ring particularly true. The value of legal scholarship and research that does not acknowledge the economic and political context in which it is undertaken, or of that which does not seek to make some positive contribution, whether implicitly or explicitly, to ending the epidemic, is difficult to see.

The second passage is from Nicholas Blomley. Writing in 1994, he is uncomfortable with the typology of academic involvement in progressive politics suggested a few years earlier by Cornel West (Reference West, Arac and Johnson1991). West's preferred model, echoing Chomsky (Reference Chomsky1969), was for the intellectual as critical organic catalyst – someone who remains inside the academy in order that they keep abreast of, and are close to, academic developments but who is also grounded outside the academy in progressive organisations. While Blomley is attracted to this idea of being doubly grounded, he worries – rightly – that this assumes and perpetuates its own hierarchy, one in which the life of the mind only happens in the university, and action only takes place outside it. Although he believes that there is a place for academic contribution (for example in conceptual framing, and developing theoretical narratives), he writes:

For me, nowhere is the importance of taking account of the experience of those directly involved in combating unsafe law at the grassroots and of acknowledging the academy's debt to their work in making law safer more clearly illustrated than in the following, personal, experience. In 2010 Jennifer Gatsi, an activist and member of the International Community of Women Living with HIV, gave a talk at the World AIDS Conference in Vienna. Her presentation (Gatsi, Reference Gatsi2010) was to be about the widespread forced sterilisation of women and girls with HIV and AIDS in Namibia – one of the most egregious human rights violations in the history of the epidemic (ICW, 2009), and not a story whose horror is easy to communicate, not least in the artificial, air-conditioned confines of a windowless seminar room in the former capital of the Austro-Hungarian Empire. Those of us in the audience waited, each in his or her straight-backed chair, pens and notebooks at the ready. And then, from a seat in the front row – not from the podium, not from a position of formal, staged, authority – Ms Gatsi stood up. And she looked around. She looked at each person in the audience in the eye, one by one, black and white, positive and negative, old and young, gay and straight, man and woman, academic and activist, and then she spoke in a voice just loud enough for all of us to hear: ‘My brothers and my sisters’, she said. ‘Listen. Listen and you will understand.’