Europe’s Shifting Response to HIV/AIDS

Despite a history of championing HIV/AIDS as a human rights issue, and a rhetorical commitment to health as a human right, European states and institutions have shifted from a rights-based response to a risk management approach to HIV/AIDS since the economic recession of 2008. An interdisciplinary perspective is applied to analyze health policy changes at the national, regional, and global levels by drawing on data from key informant interviews, and institutional and civil society documents. It is demonstrated that, in the context of austerity measures, member states such as the UK and Greece reduced commitments to rights associated with HIV/AIDS; at the regional level, the EU failed to develop rights-based approaches to address the vulnerabilities and health care needs of key populations affected by HIV/AIDS, particularly migrants and sex workers; and at the global level, the EU backtracked on commitments to global health and is prioritizing the intellectual property rights of pharmaceutical companies over the human rights of people living with HIV/AIDS. The focus within and from the EU is on containment, efficiency, and cost reduction. The rights of those most affected are no longer prioritized. Julia Smith, PhD, is a Postdoctoral Fellow in the Faculty of Health Sciences at Simon Fraser University in Canada and a Research Fellow at the Health Economics and HIV/AIDS Research Division in South Africa. Please address correspondence to the author at: Julia Smith, Blusson Hall, Room 11802, Simon Fraser University, 8888 University Drive, Burnaby, Canada, V5A 1S6. Email: [email protected]. Competing interests: None declared. Copyright © 2016 Smith. This is an open access article distributed under the terms of the Creative Commons Attribution NonCommercial License (http://creativecommons.org/licenses/by-nc/3.0/), which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original author and source are credited. Health and Human Rights Journal HHr HHR_final_logo_alone.indd 1 10/19/15 10:53 AM j. smith / papers, 145-156 146 D E C E M B E R 2 0 1 6 V O L U M E 1 8 N U M B E R 2 Health and Human Rights Journal Introduction The EU and European states have in many ways been leaders in both human rights and the HIV/ AIDS responses. The European Convention on Human Rights and the European Social Charter both recognize the right to health. European countries were among the first to adopt harm reduction approaches to mitigate HIV infections through injecting drug use, to champion the rights of men who have sex with men (MSM), and to lead in the formation of global health institutions to address HIV/AIDS epidemics in lowerand middle-income countries (LMICs).1 This article asks how responses to HIV/AIDS have changed within and from Europe since the economic recession that began in 2008. While much has been written about the impact of austerity measures on health in Europe, and on the outcomes of these policies in specific states, little of it focuses explicitly on HIV/AIDS.2 As the HIV/ AIDS response pioneered a rights-based response to health within Europe, it presents a critical case to explore policy changes. Despite a history of championing HIV/AIDS as a human rights issue, and a rhetorical commitment to health as a human right, European states and institutions have shifted from a rights-based response to a risk management approach since the economic recession of 2008. Ines Keygnaert et al. define a rights-based approach to HIV/AIDS as one that “considers health as a human right and assesses policies, programs and legislation accordingly, expecting them to promote health and guarantee access to health care for all independently of any status. This approach is rooted in the overarching principle of universality.”3 While campaigns for health-related rights have shifted focus over time, the key principles of access to health care for all, support for the most vulnerable, and protection from stigma and discrimination have been key pillars of rights-based responses related to HIV/AIDS since the 1980s. In contrast, a risk management approach is defined as “the identification, assessment, and prioritization of risks followed by coordinated and economical application of resources to minimize, monitor, and control the probability and/or impact of unfortunate events or to maximize the realization of opportunities.”4 While not necessarily mutually exclusive, key differences between rightsbased and risk management approaches relate to principles of universality versus prioritization; and a focus on equity/equality as opposed to economic efficiencies (see Table 1). There is also a notable difference between the goal of addressing a threat to protect the most vulnerable, and containing it to protect those not yet affected. While the first section of this article describes processes in place prior to the creation and expansion of the EU, the term ‘European states’ refers to those states who are presently members. The European institutions that are discussed are those engaged in lawmaking and policy setting, including the European Parliament, European Commission, and Council of the European Union. The paper presents three levels of analysis that represent different but overlapping concepts of Europe: Europe as a group of states, Europe as a regional entity, and Europe as a global actor. The first level focuses on Human Rights Example Risk Management Example Universality All people, regardless of status, have access to health care Prioritization Only citizens or permanent residents have access to health care Equity/equality All people have access to medicines regardless of costs Efficiency Intellectual property rights ensure return on investment for pharmaceutical companies Protecting the vulnerable Policies developed specifically for those most at risk of infection/ ill health Containing a threat/protecting the general population Policies isolate or imprison those who pose a risk Considers social marginalization Specialized programs to address complex determinants of health Isolates a problem Health addressed separately from other policies Table 1. Comparison of rights-based and risk management approaches j. smith / papers, 145-156 D E C E M B E R 2 0 1 6 V O L U M E 1 8 N U M B E R 2 Health and Human Rights Journal 147 policies within European member states, facilitating discussion (through select case studies) of how health policies, which remain a national competence, have shifted. The second level is regional, considering how the European Parliament has responded to issues related to HIV/AIDS within its governance jurisdictions. Finally, the paper considers how the European Commission’s engagement with the global HIV/AIDS response has changed. This multilevel analysis is crucial for two reasons. First, HIV/AIDS is a transboundary health threat that cannot be contained or addressed solely within one state or region and thus requires action across governance levels.5 Second, shifts from rights-based approaches to risk management approaches have occurred at all three levels, suggesting a regional shift that calls for further investigation and redress. This topic is approached from an interdisciplinary perspective. In order to gain perspectives on more recent events that are not documented in the scarce literature on Europe and HIV/AIDS responses, the analysis draws on data from 12 key informant interviews with members of civil society organizations (7), civil servants within European institutions (2), and staff from global health institutions (3). Interviewees were selected purposefully and interviews were conducted in person or over the phone/Skype between January 2013 and May 2014. Transcripts were analyzed using iterative, inductive content analysis to identify key themes and policy processes, and the interviewees’ perspectives on them. These were triangulated with secondary literature and document analysis of publications from civil society organizations, European institutions, and global health institutions. Ethical approval for this research was granted by the Ethics in Research Committee at the University of Bradford, where the author was based at the time. Early rights-based response to HIV/AIDS In the early 1980s, a mysterious cause of death among young adults in Europe resulted in hysteria and fear. WHO reported in retrospect, “AIDS was – and in absolute, global terms still is – a stinging challenge to the values of modernity received, for better or worse, from Europe’s Age of Enlightenment. Affluent, confident, gender-progressive, often social-democratic welfare states awoke, in the early 1980s, to an uncomfortable reminder of their human frailty.”6 Early responses focused on containing the virus, often stigmatizing those already infected. For example, far-right French politician Jean-Marie Le Pen proposed implementing “sidatoria,” which would have confined people living with HIV/AIDS (PLWHAs) in prison-like hospitals.7 Such proposals had counterproductive outcomes, such as reducing testing, as those at risk feared that if they knew their status they would be isolated and prosecuted. Meanwhile, public health programs focused on individual behavior. In 1987, the British government launched a major advertising campaign with the slogan “AIDS: Don’t Die of Ignorance.” 8 Such approaches lacked appreciation for the sociopolitical context of the epidemic.9 As efforts to produce a vaccine or treatment failed, and as public health approaches bordered on blaming individuals for their positive status, PLWHAs and their allies developed an alternative response. In 1983, the Terrence Higgins Trust formed in London to support those affected by HIV/AIDS, and in 1984, Aides formed in Paris with a similar mandate.10 Over the next decade, PLWHA support groups mushroomed, providing palliative care to the sick, confidential testing to those at risk, and counseling to those affected.11 Together with health professionals and human rights activists, these groups advocated for a response that recognized HIV/AIDS as an exceptional health issue requiring the empowerment of those most affected.12 In the absence of treatment options, public health programs increasingly adopted this human rights frame. European states, after their initial response of punishment and stigmatization, provided favorable policy environments for the realization of a rights-based response. In 1976, most had ratified the International Covenant on Economic, Social and Cultural Rights (ICESCR), which recognized the right to health. In many European states, the feminist struggles of the 1970s had resulted in greater access to contraception, which made the promotion of condoms and other means of prej. smith / papers, 145-156 148 D E C E M B E R 2 0 1 6 V O L U M E 1 8 N U M B E R 2 Health and Human Rights Journal vention less contentious than in, for example, the American context.13 Many states already had policies in place to reduce risks associated with sex work and drug use, such as decriminalization and harm reduction programs. The UK started the first syringe exchange programs to prevent HIV as early as 1987.14 Most European countries also accepted access to health care as a human right by providing comprehensive public health insurance. Due to the favorable policy and social context, there was widespread adoption of rights-based prevention strategies. In 1994, 42 states joined forces with AIDS service organizations (ASOs) at the Paris AIDS Summit, signing a declaration committing to a rights-based response to the epidemic, led by those most affected.15 In response to increasing awareness of the global scale of the HIV/AIDS epidemic, European states were among those advocating for a more coordinated global response. Scandinavian countries played a key role in the formation of the United Nations Joint Program on HIV/AIDS (UNAIDS) in 1994, and the UK played a primary role in the creation of the Global Fund to Fight HIV/AIDS, Malaria and TB in 2001.16 European countries, such as France, led the formation of UNITAIDS, which aims to improve treatment access.17 Reflecting member state practices, the European Union developed its regional and neighborhood policies in line with a rights-based approach. In response to the growing epidemic in Eastern Europe, in 2004, 52 EU member states and civil society observers gathered in Dublin for a conference on “Breaking the Barriers – Partnership to fight HIV/ AIDS in Europe and Central Asia.”18 The resulting declaration called for universal access to treatment, two years before the UN Declaration on Universal Access.19 The EU maintained support for Universal Access campaigns during the initial negotiations of the Doha Round of World Trade Organization (WTO), siding with PLWHAs and their allies, as opposed to the US and pharmaceutical companies.20 In 2007, the European Commission announced its four-year Programme for Action to Confront HIV/AIDS, Malaria and Tuberculosis.21 The program asserted European leadership in the HIV/AIDS response in general, and a commitment to a rights-based response in particular. European states: The human costs of austerity Risk management is generally associated with financial governance, as opposed to health governance, but the two fields inevitably overlap. Due to austerity measures, many European states have deprioritized a rights-based response to HIV/AIDS in order to mitigate financial risk. The UK and Greece provide two examples of this trend; these countries were selected as critical cases based on the breadth of the health-related austerity policies they implemented post-2008, and on their geographic location; in order to include examples from Northern and Southern Europe. While these two countries are not a representative sample, nor the findings generalizable, they present a similar policy shift in two very different European states.