Abstract

Introduction

Throughout the evolution of HIV/AIDS policy, institutions of global health governance have looked to human rights in framing behavioral prevention and medical treatment initiatives. While leveraging rights-based policy to protect against coercive prevention measures and to hold governments accountable for pharmaceutical treatment access, individual human rights remain limited in guiding global efforts to promote population-level prevention policy. Given a rising imperative for HIV prevention—supported by the promise of behavioral, structural and biomedical approaches to lower the incidence of HIV and employ treatment as prevention—it is necessary to reframe the rights-based mantra of ‘treatment for all’ to include the collective rights of HIV-negative populations. Challenging the conventions of the discipline, this review contests the prevailing rights-based narrative in global HIV/AIDS policy, guiding a rights-based public health approach to ‘testing, treatment, and prevention for all’.

At the intersection of public health ethics and human rights law, this article analyzes the limited effects of individual human rights claims in supporting population-level HIV prevention efforts and conceptualizes a collective rights-based response to address public health prevention through global health policy. Bridging theory and policy, this interdisciplinary analysis provides a framework for research and practice across public health ethics and global health policy, advancing collective human rights frameworks to realize population-level HIV prevention initiatives. This article begins by reviewing the evolution of global health policy efforts to address the HIV/AIDS pandemic, chronicling a global response that originated from an emphasis on individual behavioral prevention, shifted to focus on individual access to treatment and has recently sought to combine individual access to treatment with population-level prevention. From this public health background, the authors examine the role of human rights in the HIV/AIDS response—with attention paid to the relative emphasis on treatment and prevention—employing archival research within the United Nations (UN) and World Health Organization (WHO) and legal analysis of global health governance to investigate three critical stages in the evolution of human rights law in global HIV/AIDS policy, (i) the birth of the health and human rights movement, (ii) the creation of international legal standards and (iii) the rise of national litigation to assure treatment access. The authors find that while the development of human rights originated from a normative focus on underlying determinants of HIV transmission, these efforts have been reframed through a litigation-driven effort to realize individual access to treatment. Where the human rights framework remains normatively limited to those individual rights enforced against a state duty bearer, such rights have faced constrained application in framing population-level prevention policy. With prevention necessitating collective rights, rights reflective of the public good of combination prevention, this analysis examines the effect of collective rights norms for the public’s health, concluding that such rights would support global health policy efforts to slow the spread of HIV through commitments for expanded research, access to prevention technologies and further integration of HIV prevention, treatment and care in health systems.

The Prevention Imperative

This section traces the evolution of HIV/AIDS policy in global health governance, encompassing the institutions that exercise predominant authority over global determinants of health (Szlezák et al., 2010). In examining this governance, the authors demonstrate how global HIV/AIDS policy has transitioned from a narrow focus on individual behavioral prevention against transmission, to an advocacy focus on individual access to biomedical treatment, and now, recognizing the limits of this individual treatment agenda, to an expanded focus on a combination of behavioral, structural and biomedical prevention at the population level. This prevention imperative calls into question the adequacy of the individual human rights paradigm to realize the highest attainable standard of health.

Building from the first reported cases of HIV, prevention held primacy in early efforts to develop global HIV/AIDS policy. With no medical response available in the period before clinical advances in antiretroviral therapy (ART), early responses to the growing pandemic were confined to behavioral prevention in the belief that testing, education and counseling—combined with initiatives to combat discrimination and provide condoms and clean needles—would drive self-interested behavioral change (Bertozzi et al., 2009). Although individual prevention initiatives predominated from the mid-1980s to early 1990s, resources for prevention faded as the public wearied, combination ARTs emerged and HIV was rebranded a chronic, manageable disease (Merson et al., 2008). As a result, global HIV policy shifted from prevention to treatment, driven by advocacy to respond to the dying individual regardless of the broader public health impact (Benatar et al., 2009). Beginning with the 1987 approval of zidovudine (AZT), scientific advancements gave lifesaving hope for universal HIV treatment; however, this hope was tempered by its restricted treatment efficacy and prohibitive cost, limitations extended through the 1996 introduction of combination therapy or HAART (highly active antiretroviral therapy) as the standard of care for people living with HIV. With the costs of treatment rendering therapies financially inaccessible for 90% of the HIV-positive world (WHO Commission on Macroeconomics and Health, 2001), HIV remained a largely fatal diagnosis as infection rates climbed in developing countries, with Sub-Saharan Africa bearing the largest share of the global burden (UNAIDS, 2010a).

As the costs of treatment fell and antiretroviral options expanded, new institutions of global health governance emerged to ensure access to treatment and preservation of life – evolving through the 1997 launch of the Joint United Nations Programme on HIV/AIDS (UNAIDS); the 2000 adoption of the Millennium Development Goals (MDGs) and various declarations on HIV treatment; the 2001 UN General Assembly Special Session on HIV/AIDS, creating the Global Fund to Fight AIDS, Tuberculosis, and Malaria; the 2003 support for the President’s Emergency Plan for AIDS Relief (PEPFAR) in the United States and the 2003 start of the 3 by 5 Initiative through UNAIDS and WHO. Moved by the scale of the pandemic, developed nations came together in 2005 to endorse a foreign assistance commitment to attain universal access to HIV prevention, treatment, care and support by the year 2010, a target subsequently endorsed by the UN General Assembly (UK Department for International Development and the G8 Presidency, 2005). Yet, while this goal of universal access has mobilized unprecedented resources for global health, such targets for access are increasingly out of reach, and, in the current economic climate, there are growing concerns that cutbacks in support may lead to a reversal of treatment gains (Moszynski, 2010; UNAIDS, 2011).

In the face of expanding global efforts to assure treatment, HIV prevalence has continued to grow in the last 15 years, with new HIV infections outpacing ART initiation and straining already over-burdened treatment distribution programs; for every two people initiating treatment, an estimated five new HIV infections occur (UN General Assembly, 2010). With an estimated 2.5 million people newly infected with HIV in 2011, bringing the total number of people living with HIV/AIDS to 34.2 million (UNAIDS, 2012), recent declines in HIV incidence have not been widely shared, with increasing infection rates among high-risk and marginalized populations, including commercial sex workers, men who have sex with men and injection drug users (Beyrer et al., 2012). Although more than 8 million people were receiving HIV treatment in low- and middle-income countries by the end of 2010 (rising from 6.6 million in 2010 and 5.255 million in 2009), only an estimated 54% of those in need currently have access, leaving at least 6.8 million who require treatment but are not receiving it (UNAIDS, 2012). Given that ‘medical and ethical considerations endow each patient currently on treatment with a life-long “entitlement” to receive at least his or her current treatment regimen’, many now consider HIV treatment efforts ‘unsustainable’ (Bongaarts and Over, 2010: 1359). With current standards focusing on longer treatment regimens, guaranteeing HAART and regular monitoring to ensure the continued efficacy of treatment, this standard of care (even with a steady reduction in drug costs) is often not available for those in resource-limited settings.

As global HIV/AIDS funding has declined, in parallel with decreases in other forms of development assistance, increases in cumulative lifetime HIV treatment costs have driven a widening gap between rising investment targets and shrinking financial commitments for HIV prevention, treatment and care (UNAIDS, 2009; UN General Assembly, 2010). Following a meteoric rise, HIV-specific funding has stagnated at 2008 levels, falling far short of estimates of US$22–24 billion in annual contributions necessary to achieve universal access to HIV prevention, treatment, care and support by 2015 (Kates et al., 2012). These decreases in economic assistance are jeopardizing the global community’s ability to treat every HIV-positive person in the world and to meet commitments for a lifetime of treatment. As additional people begin first-line treatment—and are forced by drug resistance to progress to more expensive second- and third-line therapies—the growing costs of therapy, care and support will put treatment out of reach for an increasing share of the HIV-positive world (Boyd, 2010). Given current budgetary constraints, donors may soon reach an untenable retrogression at the intersection of global health and human rights, where they could be pressed to take away lifesaving treatment from those already on it. Faced with HIV incidence rising faster than treatment can begin, this inability to ‘treat our way out’ of the HIV pandemic has forced a return to prevention initiatives.

With an intensifying imperative for a shift in global health governance for HIV/AIDS, a number of initiatives have been developed in the last decade to investigate the promise of HIV prevention – that is, to reduce individual HIV transmission and societal HIV incidence (Auerbach et al., 2011; Padian et al., 2011). Operating at both the individual and population level, prevention engages with policy—as described below and delineated in Table 1—through a combination of behavioral, structural and biomedical approaches, including:

• Behavioral approaches, involving an ‘attempt to motivate behavioral change within individuals and social units by use of a range of educational, motivational, peer-group, skills-building approaches and community normative approaches’ (Coates et al., 2008: 670), with encouraging developments in understanding the roles that multiple concurrent sexual partnerships play in spreading HIV (Mah and Halperin, 2010);

• Structural approaches, involving an ‘aim to change the social, economic, political or environmental factors that determine HIV risk and vulnerability in specified contexts’ (Gupta et al., 2008: 766), with attention to law reforms and cash transfers (Baird et al., 2010) and

• Biomedical approaches, involving individual ‘technological’ interventions that do not rely solely on behavior change to prevent HIV transmission (Padian et al., 2008: 586), with research showing groundbreaking advancement in the development of vaccines (Rerks-Ngarm et al., 2009), curative initiatives (Margolis, 2011), pre-exposure prophylaxis (PrEP) (Karim et al., 2010; Baeten et al., 2012), vaginal microbicides (Microbicide Trials Network, 2011), treatment as prevention (Cohen et al., 2011; HIV Prevention Trials Network, 2011) and voluntary adult male circumcision (Mills et al., 2008).

These prevention opportunities, particularly when comprehensively implemented as ‘combination prevention’, offer a potentially more cost-effective and sustainable pre-emptive HIV ‘response’ than routinizing testing and scaling-up treatment, the current norm in HIV programming.

Under this newly revitalized prevention agenda, international organizations and national foreign assistance programs have incorporated prevention under global policies for ‘universal access’, drafting country-level prevention targets to complement those for treatment and care (Girard et al., 2010). At the forefront of global HIV/AIDS policy, UNAIDS and WHO strategies have set out to ‘revolutionize’ HIV prevention, calling for innovation and multisectoral efforts to scale-up prevention initiatives (UNAIDS, 2010b; WHO, 2010a). Heralding these initiatives ‘Treatment 2.0’, UNAIDS and WHO have sought this new approach to integrate prevention with treatment – to streamline the treatment process to ‘achieve and sustain universal access’ as well as to ‘maximize the preventive benefits of antiretroviral therapy’ (WHO and UNAIDS, 2011). In establishing the preventive benefits of therapy, global policy attention has turned to the effectiveness of scaling-up individual HIV treatment as a form of public health prevention, using this ‘test and treat’ model as a means to reduce HIV infectivity and limit the onward transmission of HIV (Cohen and Gay, 2010; Powers et al., 2011). Demonstrating the importance of this ‘test and treat’ model, recent studies have found that:

1. seropositive individuals on ART have viral loads six times lower than comparable individuals (Kilby et al., 2008),

2. the risk of transmission between serodiscordant couples is reduced 5-fold if the seropositive partner is on ART (Anglemyr et al., 2011) and

3. earlier initiation of ART can reduce HIV transmission by 96% in heterosexual serodiscordant couples (National Institute of Allergy and Infectious Diseases, 2011).

Compounded by the recent biomedical successes of clinical prevention trials for male circumcision, vaginal microbicides and oral PrEP, policymakers are examining the relative prioritization of treatment and prevention in global HIV/AIDS policy (Baeten et al., 2010; Karim et al., 2010; University of Washington International Clinical Research Center, 2011). Despite this prevention agenda, HIV prevention continues to account for only 22% of all HIV/AIDS spending in low- and middle-income countries, with prevention strategies inadequately targeted to local contexts of HIV transmission (UNAIDS, 2010c). Under circumstances in which public health realities have led to a shift in global health governance, it becomes necessary to recalibrate human rights to reflect this growing imperative for targeted HIV prevention paradigms, re-conceptualizing human rights norms to consider public health frameworks for global HIV prevention policy.

Human Rights to Treatment over Prevention

Despite the evolution of a health and human rights movement in response to the HIV pandemic and the application of human rights in developing early HIV/AIDS policy, human rights obligations are rarely applied to frame current global HIV prevention efforts. Where HIV prevention policy is implemented, such public health interventions are framed on the basis of economic efficiency and political feasibility rather than under the aegis of human rights (Holmes et al., 2012). Where human rights fulfillment is considered, the right to health is applied overwhelmingly to individual treatment (Gruskin et al., 2007b). This section describes how rights-based global health governance developed normatively to create collective obligations for prevention but came to be implemented programmatically through an individual right to treatment.

A Human Rights Basis for Prevention

Where the health and human rights movement has been constrained in moving beyond access to treatment, this analysis finds that such limitations stem from an inability of human rights to speak with the collective voice through which HIV prevention must be heard. Enforced as an individual right against a state duty-bearer, these inherently limited, atomized rights have proven incomplete in creating accountability for public health prevention in global HIV/AIDS policy, impeding efforts to frame prevention interventions under human rights obligations (Lieberman, 1999; Chapman, 2002). With human rights in the global HIV/AIDS response developing from individual behavioral prevention to individual medical treatment, it becomes necessary for this unsteady evolution—as depicted in Figure 1—to encompass collective combination prevention.

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Figure 1.

The evolution of human rights: shifting between individual and collective HIV policy.

Where scholars have contributed ethical arguments in positing moral commitments to shift global priorities from treatment to prevention (Brock and Wikler, 2009), there is a need to translate these ethical frameworks into legal obligations, building a human rights foundation for scaling-up prevention while maintaining the political commitments attendant to treatment (Barr et al., 2011). To bridge the growing disconnect between individual rights litigation and public health imperatives, human rights norms must incorporate collective rights to public health – rights of societies that can account for obligations to realize underlying, population-level determinants of HIV prevention through national health systems.

Collective rights operate in ways similar to individual rights; however, rather than seeking the empowerment of the individual, collective rights act at a societal level to assure the public goods that cannot be fulfilled through the absolutist mechanisms of individual entitlements. Where individual human rights examine ‘a separate isolated individual who, as such and apart from any social context, is bearer of rights’ (VanderWal, 1990), this vision of human rights, rooted in autonomy, has proven incapable of addressing public goods (Ruger, 2006; Parmet, 2009). As seen in the case of indigenous rights, wherein identity and culture cannot exist at an individual level, collective rights are seen as necessary to protect group entitlements and minority cultures (Freeman, 2011). Because these rights inhere in the collective, rather than with each individual member of the collective, they apply more readily to situations in which there is a group interest (or solidarity) in the substance of the right, with the realization of right determined at the population level (Newman, 2004). Thus, collective rights frameworks operate at a population level to address underlying determinants and assure public goods that can only be enjoyed in common with similarly situated individuals.

Although human rights were conceived following the Second World War as individual rights—with an individual rights-bearer left to make claims against a national duty-bearer (and thereby provide external restraint against a presumably tyrannical sovereign)—the rise of developing states and development debates has forced a re-examination of this individualistic conception of human rights (Otto, 1995; Donnelly, 2003). With collective rights originally advanced by the League of Nations but abandoned by the UN (as the elevation of group identity was thought to have supported the ethnic tensions that culminated in the Second World War), such collective rights were initially avoided in the development of the post-War human rights system (Van Dyke, 1982). However, with states maintaining a collective right to self-determination, this basis for “solidarity” rights would take root as developing nations became free from their colonial past, joined the UN and forced a re-examination of the individualistic conception of rights (Felice, 1996). Advancing collective rights anew in response to the economic development limitations of individual human rights frameworks, with developing states viewing traditional human rights frameworks as an extension of colonial domination, environmental health issues were quickly recognized as a group right (as a healthy environment can only be enjoyed with others) and were taken up as part of the movement for global justice through a New International Economic Order (Cornwall and Nyamu-Musembi, 2004). Drawing on this political basis in international relations, scholars and advocates have since put forward arguments for collective rights to, inter alia, development, environmental protection, humanitarian assistance, peace and common heritage (Marks, 2006).

As applied to public health, wherein public goods underlie health at a societal level, it has long been recognized in public health ethics that ‘public health and safety are not simply the aggregate of each private individual’s interest in health and safety . . . Public health and safety are community or group interests’ (Beauchamp, 1985: 29). More than the aggregate of each individual’s right, population-level prevention is a societal interest—a whole that is greater than the sum of its parts—requiring collective rights to hold duty bearers responsible to populations for the provision of public goods and necessitating positive action to provide societal access to behavioral, structural and biomedical prevention programs (Meier, 2007). With prevention serving as a public good, as disease prevention leads to ‘herd immunity’ and impacts entire societies, collective rights and their corollary implementation mechanisms become necessary to assure the policies required to provide for the tools and shared benefits of public health (Leonard, 2008). Linking ethical norms with international law, collective rights claims have shown themselves effective in responding to the health harms of a globalizing world, shifting the balance of power in international relations and creating widely recognized, if not completely realized, entitlements within the international community (Vandenhole, 2009). Such emerging rights provide a conceptual framework to develop global HIV prevention policy for the public’s health.

In framing rights-based tradeoffs in the relative support of treatment and prevention in global HIV/AIDS policy, collective rights can prove a means to negotiate competing ethical frameworks for individual capability, health equity and public health utility:

• At an individual level, collective rights can address health capability through prevention interventions, empowering individuals vulnerable to infection—particularly high-risk and marginalized populations, including the young, women, men who have sex with men, intravenous drug users and commercial sex workers—to control their own health without relying on their partners to remove the threat of HIV (Gupta et al., 2008; Ruger, 2010).

• Moving from individual agency to population-level agency, collective rights can assure equity, reducing unjust health disparities across groups by focusing not simply on the number of individuals on treatment but on the demographic distribution of prevention (and treatment as prevention) across populations, elevating distributive justice under a collective unit of analysis (London, 2007).

• At a societal level, collective rights can maximize public health utility, with prevention serving as a public good – protecting all of society by: blunting the chain of HIV infection; reducing burdens of mortality and morbidity through increased herd immunity, decreased drug resistance and improved treatment efficacy; and bolstering productivity among the healthy population in caring for a smaller infected population (Labonte and Schrecker, 2007).

Where individual rights are incapable of securing the public good of disease prevention, incapable of addressing the rights of those who are not infected and are not yet suffering, the collective enjoyment of public health can be seen as a pre-condition for the individual human right to health, enabling disease prevention that can only be achieved at a population level. With public health prevention addressing collective determinants of health outside the control of the individual, recognizing the embeddedness of individuals within their societies, collective rights can support population-level health benefits for the common good.

Thus, collective rights to public health can uphold moral commitments, support ethical norms and provide legal frameworks for asserting HIV prevention as a state obligation, with international and non-state obligations arising where the state is unable or unwilling to assert its authority to control the spread of HIV (Skogly, 2006). Implemented through the political support for collective rights among developing states and buttressed by the normative legitimacy of human rights in global health governance, such an approach could be codified in international law and incorporated into political advocacy for HIV prevention, framing institutional reforms, budgetary commitments and accountability mechanisms in national policy, international organizations and public–private partnerships. Operating at both domestic and global levels, such collective rights would empower states to seek or provide international assistance and cooperation for HIV prevention in accordance with their respective abilities, meeting global public health goals through national health systems and monitoring national-level epidemiologic indicators through human rights treaty bodies. As with other rights-based movements, the interplay between legal developments and social justice advocacy would create mutually reinforcing accountability mechanisms in securing the progressive realization of collective rights for HIV prevention (Yamin and Gloppen, 2011).

Such a collective lens would best support the rights-based approach advocated by those who have proposed early treatment as a means to the public health benefits of prevention:

Expanded HIV testing and immediate treatment would offer opportunity for highest quality positive prevention, a holistic approach that protects the physical, sexual, and reproductive health of individuals with HIV, and maximally reduces onward transmission. Provided coercion is avoided and confidentiality and dignity maintained, individual health and societal safety should benefit through reduced HIV transmission, which would enhance human rights overall (De Cock et al., 2009).

Although concerns have been voiced that such a ‘test and treat’ model would pose the risk of individual human rights violations (Rennie and Behets, 2006), particularly as routinized HIV testing has become the consensus recommendation of global health policymakers (Jurgens et al., 2009; Amon, 2010), the preponderance of policy debate has surrounded the prospect of collective benefits from public health prevention, contemplating the programmatic feasibility of early treatment to lower HIV infectivity and thereby reduce the societal incidence of HIV (Bayer and Edington, 2009; Zachariah et al., 2011).

Yet, despite the collective advantages of the ‘test and treat’ approach, this model leaves out the rights of those who are not HIV-positive, denying them the capability to prevent their own infection and thus stem the tide of the HIV pandemic. If collective rights are to frame a means to testing, treatment and prevention for all, global health governance must assure that societies can come together to produce the public good of prevention and reduce the incidence of HIV toward zero – normalizing ‘opt-out’ HIV testing, reducing stigma and increasing health system utilization through both treatment (for those who are positive) and prevention (for those who are negative).

In operationalizing collective rights to public health for the progressive reduction of HIV transmission, the most obvious approach would be to develop a vaccine and distribute it to all those who are HIV-negative. Such a vaccine would promote equitable societal-level protection against disease while placing few continuing demands on national health systems (Andre et al., 2008). Similar to the eradication of smallpox, a universal vaccination campaign, supporting the public good of disease eradication, would be uniquely conducive to a collective rights-based approach to prevention. However, in a world without the immediate prospect of a vaccine (Johnston and Fauci, 2008), the most realistic operationalization of collective rights would be—as diagrammed in Figure 2—the expansion of HIV testing as a universal gateway to the holistic combination of individual treatment and collective combination prevention.

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Figure 2.

The rights-based equivalency of universal vaccination to universal treatment and collective combination prevention.

Implemented comprehensively, viewing treatment as both beneficial to the individual and preventative for the collective, such an approach would be the rights-based equivalent of vaccination – with each prevention intervention only partially effective but together serving as a more perfect societal barrier against a rise in HIV incidence (Hankins and de Zalduondo, 2010). Providing rights-based frameworks by which combination prevention interventions are appropriate to the epidemiology, social context and resources of the nation (Auerbach et al., 2011), collective rights can facilitate accountability to assure that prevention interventions are available, accessible, acceptable and of sufficient quality. To assure such country-specific scale-up of HIV testing, treatment and prevention, the implementation of collective rights through global prevention policy will become crucially important as research advances, technologies are distributed and national health systems expand for HIV prevention.

A Rights-Based Approach to Global Prevention Policy

With HIV prevention both a public health and a human rights imperative, human rights law must frame global health governance to integrate prevention policy as central to the universal access agenda. A collective rights-based approach can address deficiencies in global health policy for HIV prevention, facilitating the public’s health through a rights-based approach to: supporting HIV prevention research, financing and allocating effective HIV prevention technologies and incorporating HIV prevention in primary health care systems.

Conclusions

With human rights bearing a central role in the global HIV/AIDS response, collective rights can reframe the obligations of global health governance, projecting a vision of greater justice by addressing the public’s health through HIV prevention. Where global health governance has begun to debate the disproportionate funding targeted at individual HIV treatment—shifting from a treatment agenda elevated by rights-based advocates to a more pragmatic distribution between treatment and prevention—human rights practitioners have an opportunity to apply rights-based frameworks in this evolution of global HIV/AIDS policy. By engaging collective rights to public health, human rights can continue to protect populations vulnerable to HIV infection and structure holistic HIV/AIDS policy to ensure testing, treatment and prevention for all.

Funding

This research was supported by the University of North Carolina at Chapel Hill Center for AIDS Research (CFAR), an NIH funded program P30 AI50410.

Conflicts of Interest

None declared.

Acknowledgements

References