By Cecilia Van Hollen

Stanford University Press, 2013. 274 pp.

Cecilia Van Hollen’s latest book, Birth in the Age of AIDS: Women, Reproduction, and HIV/AIDS in India, provides a nuanced, readable, and extremely compelling exploration of the lived experiences of women enrolled in prevention of parent to child transmission (PPTCT) programs in Tamil Nadu, India in the first decade of the 21^st century. Drawing on interviews with women living with HIV/AIDS, pregnant women receiving prenatal care but not known to be HIV-positive, and a wide array of HIV/AIDS policy experts, NGO workers and directors, doctors and counselors, lawyers, and government officials, Van Hollen describes the experiences and perspectives of these women as they navigate the fraught landscape of testing and diagnosis, and their subsequent decisions regarding disclosure, pregnancy, labor, and breastfeeding.

Van Hollen’s work responds to a need for studies that examine the ways that national and international HIV/AIDS programming and activism impact and are shaped by local realities. Although the experiences of these women are presented as discreet and individual, Van Hollen also attends to them as “the local embodiment of world history” (8). She explores not only the ways in which these experiences are affected by a particular social landscape, but also how the responses to the epidemic are themselves transforming that landscape. Drawing upon research in Tamil Nadu stretching from 2002 to 2008 (with the bulk done in 2004), she maps out the ways in which treatment and prevention programs in Tamil Nadu (as well as, to a lesser extent, the rest of India), have shifted throughout this period, and, therefore, the ways in which consequences of these programs, intended and unintended, have also changed. To add to the depth of this study, Van Hollen also uses her earlier research on birth and reproduction in Tamil Nadu (2003), to consider the ways in which the birthing experience is changed by a positive HIV diagnosis.

After the Introduction, the second chapter lays out a general history of the HIV/AIDS epidemic in India, with a specific focus on Tamil Nadu, as the state in India with perhaps the most extensive and liberal response to the epidemic. Since the mid-1990s, Chennai, the capital of Tamil Nadu and one of Van Hollen’s three field sites, has emerged as a center for AIDS-related activism. She briefly touches on several of the reasons why Tamil Nadu has been at the forefront of HIV activism and response, and the specific history of the PPTCT program.

The following seven chapters use life histories and extended quotes from interviews to explore the lived experiences of Van Hollen’s interlocutors. Chapters Three and Four deal with conversations about testing, decisions to take the HIV test or not, and whether or not to involve one’s husband in that decision. Chapter Four also explores the complicated ethics of informed consent, and the many ways in which their application varies given social and material realities. The book then moves into five chapters that deal exclusively with the experiences of women living with HIV/AIDS. Chapter Five explores how these women experience and deal with stigma. Stigma is, in India as in much of the rest of the world, a defining characteristic of the experiences of many people living with HIV/AIDS. This book focuses on the many intertwining hardships experienced by these women, which are sometimes exacerbated by the very programs that aim to reduce the incidence of HIV. Given India’s relatively conservative societal norms around sex, particularly pre- or extra-marital sex, coupled with gender discrimination, and the stigma of widowhood in India, these women are saddled with a sometimes seemingly staggering level of discrimination. With a great nuance and attention to variety, Van Hollen explores the individual experiences of stigma and blame, and, importantly, the ways that these experiences vary in different spaces and given different circumstances and how they are negotiated, resisted, and conceptualized. For instance, she compares and contrasts the blame that these women face in their families, especially at the homes of their in-laws, where they are often blamed for infecting their husbands (in part because, through these PPTCT programs, women are frequently diagnosed before their husbands, or at least before their husbands’ status is disclosed). However, in public women are often pitied (as the presumed wives, or widows, of unfaithful husbands), a reaction which they also often resist, not wanting to be the recipients of pity any more than blame.

In Chapter Six, Van Hollen provides insight into the very complicated ways in which the women with whom she spoke reacted to their diagnoses, how such a diagnosis changes their ideas about the pregnancy, and how and why they consider the option to abort. Most dismissed the option of abortion for a variety of reasons including that they thought or were told that their pregnancy was too far along to abort. They also cited pressure from Christian aid organizations, and the discourse of positive living in many secular HIV support groups as additional reasons for choosing to continue with the pregnancy.

Chapter Seven examines the process of labor itself, what kind of prenatal care is sought, and the various and complex influences of social and kin relations as women navigate these decisions, as well those concerning whether to disclose their status to relations, friends, and medical caregivers. On top of the significant factor of stigma around HIV in medical settings (many women report being turned away from hospitals once their status became known, or having to deliver alone with little support as nurses and orderlies refused to change IVs and provide care for women they knew to be HIV-positive), Van Hollen also argues that many healthcare institutions, especially public institutions, suffer from serious material concerns, and may have inadequate and insufficient supplies to provide safe care to HIV-positive individuals.

In Chapter Eight, Van Hollen explores the fraught decision-making processes around breast- and/or bottle-feeding, arguing that for many women, aside from the significant economic hardship of purchasing formula or milk for their infants, deciding not to breast-feed is an extremely difficult decision in a society where mother’s milk is seen as a deeply profound medium for the transmission of both the mother’s love and of Tamil identity itself to the child. In her final chapter, Van Hollen discusses the ways in which these women are agitating for their own rights, and the rights and hopes of their children. Here she argues that HIV/AIDS activism has opened up a space in which prevailing norms, gender roles, and discrimination are challenged, not just for HIV-positive individuals, but more broadly as well.

Van Hollen builds upon the theories of therapeutic citizenship (Nguyen 2010) and patient citizenship (Biehl 2007); she also considers the ways in which a transnational discourse of positive living can be seen as a form of neoliberal self-care (the Indian government, since liberalization in 1991, has turned more and more away from service provision and now, as Van Hollen tells us, spends less than 1% of its GDP on health care). However, she also points out that HIV-positive individuals and their organizations are at the forefront of a fight to demand rights and services from the government. This kind of therapeutic citizenship, in fact, grants them a platform from which to lobby the government for their rights as citizens, which in turn may transform, or open up space for broader appeals on behalf of women’s rights. Yet, she also argues that these appeals are increasingly made to, or fulfilled by, national and international NGOs rather than the state. Not only that, but, as Van Hollen explains, one of the institutions at which women receive extremely good (free) prenatal and PPTCT care, is funded by the NIH and several pharmaceutical companies. The women receiving care there are in fact all participants in a drug trial. Aside from the obvious questions about ethics and consent when, for many of these women, it is a choice between either being part of a drug trial or receiving significantly worse or no care, her study contributes to the growing body of literature on the “bioavailability” of women’s bodies, especially poor women’s bodies, for exploitation in an era of global capitalism (Cohen 2005).

Throughout the book Van Hollen manages to hold two seemingly opposed ideas together: the sometimes extreme constraints to which these women are subjected as a result of multiple and overlapping stigma and discrimination, and their expressions of agency within and through these very structures. Contributing to feminist anthropology on various expressions of agency within structural constraints, she extends Margaret Lock and Patricia Kaufert’s (1998) ideas about ambivalence coupled with pragmatism to explore and explain these women’s engagement with the medicalization of their pregnancies. This book is an excellent and very accessible example of the ethnography of HIV/AIDS, and will be of interest to scholars and students of medical anthropology, global health, feminist anthropology, and India.

Lily Shapiro is a graduate student in Sociocultural Anthropology at the University of Washington, Seattle with a focus on medical anthropology and South Asian Studies. Her research concerns factory accidents and reconstructive plastic surgery in South India; through this lens she is interested in exploring the body, occupational health, labor, and the globalization of medical expertise and technologies. She is also a contributor to Somatosphere’s monthly Web Roundup series.

Biehl, João. 2007. Will to Live: AIDS Therapies and the Politics of Survival. Princeton, NJ: Princeton University Press.

Cohen. 2005. “Operability, Bioavailability, and Exception.” In Aihwa Ong and Stephen Collier, eds., Global Assemblages: Technology, Politics, and Ethics as Anthropological Problems, 79-90. Malden, MA: Blackwell.

Lock, Margaret and Patricia Kaufert. 1998. “Introduction.” In Margaret Lock and Patricia Kaufert, eds., Pragmatic Women and Body Politics, 1-27. Cambridge, UK: Cambridge University Press.

Nguyen, Vinh-Kim. 2010. The Republic of Therapy: Triage and Sovereignty in West Africa’s Time of AIDS. Durham, NC: Duke University Press.

Van Hollen, Cecilia. 2003. Birth on the Threshold: Childbirth and Modernity in South India. Berkeley, CA: University of California Press.

[W]e embark on this special issue at a particular disjuncture in the history of the epidemic. Just over 10 years ago, the President’s Emergency Plan for AIDS Relief (PEPFAR) was launched, shortly after the introduction of the Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM). What followed was a race to treat and prevent HIV in resource-poor contexts – a global ‘scale-up’ that set the stage for many subsequent global health initiatives. For many, scale-up represented a primarily technocratic and infrastructural challenge: a focus on how donors, agencies, NGOs and community-based organisations (CBOs) could develop the kinds of health system capacities necessary for the large-scale implementation of treatment regimens. Now, however, we appear to be at the twilight of this acute period of scale-up: many perceive the long-awaited expansion of treatment as unfinished, cut short by the global financial crisis. Many now speak of ‘scale-down’ as an inevitability, rather than the potential consequence of shifting funding priorities. Other global health concerns seem well-poised to eclipse the once exceptional focus on HIV/AIDS.

The fourteen articles that compose the issue work across a range of disciplines, geographic foci, and particular questions to flesh out a portrait of the global ‘scale-up’ response and where it has left those funding, fighting, and living with HIV. The details of the articles are as follows:

‘All they do is pray’: Community labour and the narrowing of ‘care’ during Mozambique’s HIV scale-up
Ippolytos Kalofonos

This paper tracks the intertwined biographies of a community home-based care (CHBC) volunteer, Arminda, the community-based organisation she worked for, Mufudzi, and the HIV scale-up in Mozambique. The focus is on Arminda – the experiences, aspirations, skills, and values she brought to her work as a volunteer, and the ways her own life converged with the rise and fall of the organisation that pioneered CHBC in this region. CHBC began in Mozambique in the mid-1990s as a community-level response to the AIDS epidemic at a time when there were few such organised efforts. The rapid pace and technical orientation of the scale-up as well as the influx of funding altered the practice of CHBC by expanding the scope of the work to become more technically comprehensive, but at the same time more narrowly defining ‘care’ as clinically-oriented work. Over the course of the scale-up, Arminda and her colleagues felt exploited and ultimately abandoned, despite their work having served as the vanguard and national model for CHBC. This paper considers how this happened and raises questions about the communities constituted by global health interventions and about the role of and the voice of community health workers in large-scale interventions such as the HIV scale-up.

Participation, decentralisation and déjà vu: Remaking democracy in response to AIDS?
Nora J. Kenworthy

Participation, decentralisation and community partnership have served as prominent motifs and driving philosophies in the global scale-up of HIV programming. Given the fraught histories of these ideas in development studies, it is surprising to encounter their broad appeal as benchmarks and moral practices in global health work. This paper examines three intertwined, government-endorsed projects to deepen democratic processes of HIV policy-making in Lesotho: (1) the ‘Gateway Approach’ for decentralising and coordinating local HIV responses; (2) the implementation of a community council-driven priority-setting process; and (3) the establishment of community AIDS councils. Taken together, these efforts are striking and well intentioned, but nonetheless struggle in the face of powerful global agendas to establish meaningful practices of participation and decentralisation. Examining these efforts shows that HIV scale-up conveys formidable lessons for citizens about the politics of global health and their place in the world. As global health initiatives continue to remake important dimensions of political functioning, practitioners, agencies and governments implementing similar democratising projects may find the warnings of earlier development critics both useful and necessary.

Elusive accountabilities in the HIV scale-up: ‘Ownership’ as a functional tautology
Daniel E. Esser

Mounting concerns over aid effectiveness have rendered ‘ownership’ a central concept in the vocabulary of development assistance for health (DAH). The article investigates the application of both ‘national ownership’ and ‘country ownership’ in the broader development discourse as well as more specifically in the context of internationally funded HIV/AIDS interventions. Based on comprehensive literature reviews, the research uncovers a multiplicity of definitions, most of which either divert from or plainly contradict the concept’s original meaning and intent. During the last 10 years in particular, it appears that both public and private donors have advocated for greater ‘ownership’ by recipient governments and countries to hedge their own political risk rather than to work towards greater inclusion of the latter in agenda-setting and programming. Such politically driven semantic dynamics suggest that the concept’s salience is not merely a discursive reflection of globally skewed power relations in DAH but a deliberate exercise in limiting donors’ accountabilities. At the same time, the research also finds evidence that this conceptual contortion frames current global public health scholarship, thus adding further urgency to the need to critically re-evaluate the international political economy of global public health from a discursive perspective.

Evidence and AIDS activism: HIV scale-up and the contemporary politics of knowledge in global public health
Christopher J. Colvin

The HIV epidemic is widely recognised as having prompted one of the most remarkable intersections ever of illness, science and activism. The production, circulation, use and evaluation of empirical scientific ‘evidence’ played a central part in activists’ engagement with AIDS science. Previous activist engagement with evidence focused on the social and biomedical responses to HIV in the global North as well as challenges around ensuring antiretroviral treatment (ART) was available in the global South. More recently, however, with the roll-out and scale-up of large public-sector ART programmes and new multi-dimensional prevention efforts, the relationships between evidence and activism have been changing. Scale-up of these large-scale treatment and prevention programmes represents an exciting new opportunity while bringing with it a host of new challenges. This paper examines what new forms of evidence and activism will be required to address the challenges of the scaling-up era of HIV treatment and prevention. It reviews some recent controversies around evidence and HIV scale-up and describes the different forms of evidence and activist strategies that will be necessary for a robust response to these new challenges.

Up-scaling expectations among Pakistan’s HIV bureaucrats: Entrepreneurs of the self and job precariousness post-scale-up
Ayaz Qureshi

Existing research has documented how the expansion of HIV programming has produced new subjectivities among the recipients of interventions. However, this paper contends that changes in politics, power and subjectivities may also be seen among the HIV bureaucracy in the decade of scale-up. One year’s ethnographic fieldwork was conducted among AIDS control officials in Pakistan at a moment of rolling back a World Bank-financed Enhanced Programme. In 2003, the World Bank convinced the Musharraf regime to scale up the HIV response, offering a multimillion dollar soft loan package. I explore how the Enhanced Programme initiated government employees into a new transient work culture and turned the AIDS control programmes into a hybrid bureaucracy. However, the donor money did not last long and individuals’ entrepreneurial abilities were tested in a time of crisis engendered by dependence on aid, leaving them precariously exposed to job insecurity, and undermining the continuity of AIDS prevention and treatment in the country. I do not offer a story of global ‘best practices’ thwarted by local ‘lack of capacity’, but an ethnographic critique of the transnational HIV apparatus and its neoliberal underpinning. I suggest that this Pakistan-derived analysis is more widely relevant in the post-scale-up decade.

HIV testing as prevention among MSM in China: The business of scaling-up
Elsa L. Fan

In this paper, I examine the emergence of goumai fuwu, or contracting with social organisations to provide social services, in the HIV/AIDS sector in China. In particular, I interrogate the outsourcing of HIV testing to community-based organisations (CBOs) serving men who have sex with men (MSM) as a means of scaling-up testing in this population, and how the commodification of testing enables new forms of surveillance and citizenship to emerge. In turn, I tie the scaling-up of testing and its commodification to the sustainability of CBOs as they struggle to survive. In recent years, the HIV/AIDS response in China has shifted to expanding testing among MSM in order to reduce new infections. This response has been catalysed by the transition to sexual contact as the primary transmission route for HIV and the rising rates of infection among MSM, leading government institutions and international donors to mobilise CBOs to expand testing. These efforts to scale-up are as much about testing as they are about making visible this hidden population. CBOs, in facilitating testing, come to rely on outsourcing as a long-term funding base and in doing so, unintentionally extend the reach of the state into the everyday lives of MSM.

Bringing the state back in: Understanding and validating measures of governments’ political commitment to HIV
Radhika J. Gore, Ashley M. Fox, Allison B. Goldberg, and Till Bärnighausen

Analysis of the politics of HIV programme scale-up requires critical attention to the role of the state, since the state formulates HIV policies, provides resources for the HIV response and negotiates donor involvement in HIV programmes. However, conceptual and methodological approaches to analysing states’ responses to HIV remain underdeveloped. Research suggests that differences in states’ successes in HIV programme scale-up reflect their levels of ‘political commitment’ to responding to HIV. Few empirical measures of political commitment exist, and those that do, notably the AIDS Program Effort Index (API), employ ad hoc scoring approaches to combine information from different variables into an index of commitment. The indices are thus difficult to interpret and may not have empirically useful meaning. In this paper, we apply exploratory factor analysis to examine whether, and how, selected variables that comprise the API score reflect previously theorised dimensions of political commitment. We investigate how variables associated with each of the factors identified in the analyses correspond to these theorised dimensions as well as to API categories. Finally, we discuss potential uses – such as political benchmarking and accountability – and challenges of factor analysis as a means to identify and measure states’ political commitment to respond to HIV.

‘Low-hanging fruit’: Counting and accounting for children in PEPFAR-funded HIV/AIDS programmes in South Africa
Lindsey J. Reynolds

The article traces the social life of a policy that aimed to define and circumscribe the ambiguous and contested category of ‘orphaned and vulnerable children’ (or OVC) in South Africa at the height of the ‘emergency response’ to HIV/AIDS. Drawing on several months of institutional ethnographic research conducted over the course of five years with South African organisations receiving funding from the US President’s Emergency Plan for AIDS Relief to provide services to ‘OVC’, the project interrogates the influence of governmental forms of counting and accounting on health policy and practice in South Africa. Focusing on the experiences of one organisation, the article describes a process of policy ‘translation’ typified by a series of disconnects between the intentions of a policy and the exigencies of implementation, structured by the ambiguous and flexible nature of the ‘OVC’ category. In this context, the article argues that the uncertainty produced by the implementation of the guidelines was not simply an artefact of a poorly designed policy, but rather signals an underlying epistemological tension in the practice of ‘global health’, in which quantitative metrics designed for monitoring and evaluation are often incapable of approximating the complexities of everyday life.

Towards the embodiment of biosocial resistance? How to account for the unexpected effects of antiretroviral scale-up in the Central African Republic
Pierre-Marie David

At the fringes of the unprecedented medication scale-up in the treatment of HIV, many African countries have experienced dramatic antiretroviral drug stock-outs. Usually considered the result of irrational decisions on behalf of local politicians, programme managers and even patients (who are stigmatised as immoral), these problems seem not to be so exceptional. However, ethnographic attention to the social consequences of the presence and absence of antiretroviral drugs in the Central African Republic (CAR) suggests that these stock-outs entail far more than logistical failures. In 2010 and 2011 in the CAR, major antiretroviral treatment (ARV) stock-outs resulted in the renewal of ‘therapeutic’ social ties and also significant social resistance and defiance. While this paper explores reasons for the shortage, its focus is on subsequent popular reactions to it, particularly among people who are HIV-positive and dependent on ARVs. The exceptional and ambiguous consequences of these drug stock-outs raise new concerns relevant to the politics of global public health.

Meaningful change or more of the same? The Global Fund’s new funding model and the politics of HIV scale-up
Anuj Kapilashrami and Johanna Hanefeld

As we enter the fourth decade of HIV and AIDS, sustainability of treatment and prevention programmes is a growing concern in an environment of shrinking resources. The Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM) will be critical to maintaining current trajectories of scale-up and ultimately, ensuring access to HIV treatment and prevention for people in low/middle-income countries. The authors’ prior research in India, Zambia and South Africa contributed evidence on the politics and impact of new institutional and funding arrangements, revealing a ‘rhetoric-reality gap’ in their impact on health systems, civil society participation, and achievement of population health. With its new funding strategy and disbursement model, the Fund proposes dramatic changes to its approach, emphasising value for money, greater fund predictability and flexibility and more proactive engagement in recipient countries, while foregrounding a human rights approach. This paper reviews the Fund’s new strategy and examines its potential to respond to key criticisms concerning health systems impact, particularly the elite nature of this funding mechanism that generates competition between public and private sectors and marginalises local voices. The authors analyse strategy documents against their own research and published literature and reflect on whether the changes are likely to address challenges faced in bringing HIV programmes to scale and their likely effect on AIDS politics.

After the Global Fund: Who can sustain the HIV/AIDS response in Peru and how?
Ana B. Amaya, Carlos F. Caceres, Neil Spicer, and Dina Balabanova

Peru has received around $70 million from Global Fund to fight AIDS, Tuberculosis and Malaria (Global Fund). Recent economic growth resulted in grant ineligibility, enabling greater government funding, yet doubts remain concerning programme continuity. This study examines the transition from Global Fund support to increasing national HIV/AIDS funding in Peru (2004–2012) by analysing actor roles, motivations and effects on policies, identifying recommendations to inform decision-makers on priority areas. A conceptual framework, which informed data collection, was developed. Thirty-five in-depth interviews were conducted from October to December 2011 in Lima, Peru, among key stakeholders involved in HIV/AIDS work. Findings show that Global Fund involvement led to important breakthroughs in the HIV/AIDS response, primarily concerning treatment access, focus on vulnerable populations and development of a coordination body. Nevertheless, reliance on Global Fund financing for prevention activities via non-governmental organisations, compounded by lack of government direction and weak regional governance, diluted power and caused role uncertainty. Strengthening government and regional capacity and fostering accountability mechanisms will facilitate an effective transition to government-led financing. Only then can achievements gained from the Global Fund presence be maintained, providing lessons for countries seeking to sustain programmes following donor exit.

Confronting ‘scale-down’: Assessing Namibia’s human resource strategies in the context of decreased HIV/AIDS funding
Liita-Iyaloo Cairney and Anuj Kapilashrami

In Namibia, support through the Global Fund and President’s Emergency Plan for AIDS Relief has facilitated an increase in access to HIV and AIDS services over the past 10 years. In collaboration with the Namibian government, these institutions have enabled the rapid scale-up of prevention, treatment and care services. Inadequate human resources capacity in the public sector was cited as a key challenge to initial scale-up; and a substantial portion of donor funding has gone towards the recruitment of new health workers. However, a recent scale-down of donor funding to the Namibian health sector has taken place, despite the country’s high HIV and AIDS burden. With a specific focus on human resources, this paper examines the extent to which management processes that were adopted at scale-up have proven sustainable in the context of scale-down. Drawing on data from 43 semi-structured interviews, we argue that human resources planning and management decisions made at the onset of the country’s relationship with the two institutions appear to be primarily driven by the demands of rapid scale-up and counter-productive to the sustainability of interventions.

HIV scale-up in Mozambique: Exceptionalism, normalisation and global health
Erling Høg

The large-scale introduction of HIV and AIDS services in Mozambique from 2000 onwards occurred in the context of deep political commitment to sovereign nation-building and an important transition in the nation’s health system. Simultaneously, the international community encountered a willing state partner that recognised the need to take action against the HIV epidemic. This article examines two critical policy shifts: sustained international funding and public health system integration (the move from parallel to integrated HIV services). The Mozambican government struggles to support its national health system against privatisation, NGO competition and internal brain drain. This is a sovereignty issue. However, the dominant discourse on self-determination shows a contradictory twist: it is part of the political rhetoric to keep the sovereignty discourse alive, while the real challenge is coordination, not partnerships. Nevertheless, we need more anthropological studies to understand the political implications of global health funding and governance. Other studies need to examine the consequences of public health system integration for the quality of access to health care.

AIDS policy responsiveness in Africa: Evidence from opinion surveys
Ashley M. Fox

As a result of massive scale-up efforts in developing countries, millions of people living with HIV are now receiving antiretroviral therapy (ART). However, countries have been uneven in their scale-up efforts with ART coverage rates exceeding expectations in some places and lagging behind expectation in others. This paper develops a model that explains ART scale-up as a function of the responsiveness of political parties to their primary constituents. Specifically, the paper argues that, faced with a perilous ‘threat to the nation’, countries responded in one of two ways, both of which were designed to appeal to their primary constituents – either adopting a ‘Geneva Consensus’ response, or depicting the epidemic as a Western disease and adopting a ‘pan-African’ response. The article tests this theory using Afrobarometer data for eleven countries. The paper finds that HIV/AIDS is generally a non-partisan issue in most countries. However, the analysis does uncover some differences in partisan support for HIV/AIDS responses in both countries that have adopted Geneva Consensus and pan-African responses, though not in the direction hypothesised. The lack of congruence in policy preferences between the public and their governments suggests a democratic deficit in that these governments have acted independently of the preferences of core constituents.

Communication never occurs without a transformation,
and indeed always involves a stylized remodelling,
which intracollectively achieves corroboration
and which intercollectively yields fundamental alteration.

(Fleck 1981, 111)

One office, two diseases, two disciplines. That’s where we started. And while sharing an office as post-doctoral researchers at the University of Zürich, that’s where we stumbled upon one of those “epistemological obstacles” – to use Gaston Bachelard’s famous expression – when we were trying to think about two distinct diseases, tuberculosis (TB) and HIV/AIDS, as an entangled object of co-infection, in short as TB/HIV. Dubbed as ‘double trouble’, ‘perfect storm’, ‘deadly duo’ or ‘deadly liaison’, TB/HIV is understood to be a blending of the two deadliest epidemics of the 20th century: “In 2007, 1.37 million people infected with HIV were estimated to be coinfected with TB, according to the World Health Organization, and 1 of 4 deaths from TB is now HIV related” (Mayer and Dukes Hamilton 2010) and “living with HIV, dying of TB” has become the morbid slogan to describe the often preventable outcome of this steadily emerging global health crisis.

In order to approach TB/HIV as an entangled object, we organized a Symposium called “TB/HIV: Distinct Histories, Entangled Futures. Towards an Epistemology of Co-infection,” which took place at the Fondation Brocher in Geneva in February 2014 and was generously funded by the Fondation Brocher as well as the Institute for the History of Medicine of the University of Zürich (programme below).  A group of engaged scholars from different disciplines, countries, and institutions shared their rich and inspiring thoughts to discuss this challenging topic. As for ourselves, each one of us brought a rather unusual disease perspective to this collective experiment: as an anthropologist of European biomedicine and public health with a research focus on France and Germany, Janina worked on a classical medical history object – tuberculosis – and as a historian of medicine Lukas engaged with HIV and AIDS, since the late 1990’s a paradigmatic research object for many medical anthropologists engaging with global infectious diseases.

Lukas followed the trail of visualizations of AIDS and HIV in medical atlases to interrogate the becoming of the disease entity of AIDS through clinical photographs, epidemiological mappings and virus models. Unfolding these visual archives within the framing of medical history revealed the many ways in which images merge symptoms of opportunistic diseases, geographical patterns and causal agents in order to reveal the entity of a chronic disease that inherited the former “epidemic of signification” (Treichler 1988). Lukas showed, that the growing specificity and uniqueness of AIDS, its ontologization, was as crucial in its normalization as was social activism, pharmaceutical intervention or global funding efforts.

Janina demonstrated how TB – the paradigmatic “white plague” of the past – is conceived of as a “disease without a future” in contemporary Western Europe today, regaining sense in France and Germany only as a disease of the Other (immigrants) and the Elsewhere (the Global South and the East). Yet she also described how TB – against common assumptions – has always persisted within European countries, and so has an important yet largely unrecognized biopolitical apparatus of disease control, set up in the early 20^th century, spanning the laboratory, clinical medicine and public health. Through multi-sited fieldwork, Janina thereby showed TB to be an awkward spatio-temporal object for European medicine, public health and their societies in the present, whose being and problematization changes with each site, making it a disease multiple.

Despite obvious differences in the methodologies, disciplinary conventions and the objects of investigation, our research was nevertheless characterized by a common concern: to carve out the dynamics of stability and dissolution of diseases, of transformation and repetition of treatment and prevention, of inclusion and exclusion, of continuity and change – be it in the domain of disease ontology, clinical practice or the politics of public health. Thinking in terms of entanglements and collaboration while at the same time understanding the analytics of separation was thus the challenge we set out to confront when organizing the international symposium on TB/HIV.

Scholars from the humanities, social sciences and the field of public health came together to develop perspectives, discuss limits and engage in an interdisciplinary exchange of ideas around the topic of co-infection. The Symposium was clustered in three sections: Beginning with a number of historical perspectives, TB and HIV were approached as entangled and parallelly distinguished entities. “Beyond Separation and Integration” worked as a framing, to bring historians (Oppenheimer, Columbia University and Condrau, University of Zurich) in contact with policy makers and scientific advisors (Getahun, WHO and Godfrey-Faussett, LSHTM/UNAIDS). Different iconographies (Unger/Odukoya, LMU Munich), contrasting cultures of care (Daftary, Columbia University) and the difficult process of policy integration (Vidal, IRD Youndé) as well as the dissimilar effects of economic and political models opposing scarcity and health equity (Salmaan Keshavjee, Harvard Medical School) were topics in a series of discussions on the distinguishable nature of the diseases and their histories. How to think “Beyond Singularities” and beyond the binaries of TB and HIV was demonstrated in a session about localized examples of co-infection and their management. HIV and Hepatitis C co-infection (Chabrol, Université d’Aix-Marseille), the “trifecta” of HIV, TB and Cancer (Livingston, Rutgers University) or the entanglement of TB with other disease programs (Harper/Ecks) were conceptually theorized through ethnographic descriptions. Thinking multiple diseases, disease multiplicity, and patient complexity on an epistemological level was the scope of the last session “Towards Entanglements.” Following rhetorical figures across different disease campaigns (Patton, Simon Fraser University), exemplifying the poisonous ingenuity of time at the example of a patient’s trajectory (Meyers, Wayne State University) and exploring the potentiality of multi-morbidity for novel collaborations (Rosengarten, Goldsmith College). Through fine-grained ethnographies that mingled with conceptual work, the symposium laid out the dense field of co-infection and opened up for debate how to think with and through them in the field of medicine and public health.

The symposium thereby brought together in one location different research communities of TB and HIV/Aids, much in the way that we have been brought together in one single office. It offered a space to jointly think (about) TB/HIV and other co-infections, through an encounter of thought collectives defined by single diseases. It thereby facilitated a scientific “contact zone” (Pratt 1991) so to speak, in which researchers, activists and policy makers from different disease contexts, countries, institutions, disciplines and academic backgrounds could encounter each other and work together, a “zone of awkward engagements”, to use a formulation by Ana Tsing,  “where different rationalities rub against each other, compete and become entangled in different ways” (Kontopodis et. al 2011). Through the institutional, disciplinary and geographic mélange of its participants, the symposium, taking place at the beautiful and remote location of the Fondation Brocher, was thus a unique opportunity to engage in a collective reflection beyond single disease histories and presents of TB/HIV.

One way to think further about this “engagement” and encounter of two diseases and their communities is to return to the seminal work of Ludwik Fleck, who followed the multiple biographies of syphilis. In his work, Fleck raised awareness about the troubled and troubling effects which occur when two thought collectives communicate and when their objects start to mingle. Much alike his quote above suggests, the emergence of a new entity through communication and mingling is not necessarily connected to the disappearance of the former distinguishable entities through which the thought collectives emerged in the first place.

TB/HIV serves as perfect example for this line of thought. TB/HIV raises a set of new problems and challenges in terms of care, treatment or prevention; just adding TB-practices to HIV-practices won’t solve the crisis that emerged with the linkage of the deadly double, nor will the thinking about TB/HIV as a simple addition of diseases show new ways to conceptualize co-infections. Here, Fleck reminds us that the communication between two thought collectives achieves fundamental alteration intercollectively, namely between the distinct communities and their way of thinking. In other words when thinking together about both diseases or in cross-referencing them through collective research, new epistemologies can emerge. But Fleck also insists on what he calls “intracollective corroboration”, pointing to the fact that the emergence of a new and fundamentally altered entity – TB/HIV – will at the same time strengthen and stabilize the “old” entities within their epistemological habitats. This parallel process of alteration and corroboration is not only at work in the case of TB/HIV. Rather, it can be understood as a fundamental principle of the emergence of all scientific knowledge and their objects of investigation, as Fleck reminds us.  AIDS and TB – as any other disease – were not born as natural entities, but merged at different points in history from fuzzy disease phenomena, only gradually morphing into specific and well defined disease entities. Thus engaging with TB/HIV from an epistemological and interdisciplinary as well as intercollective perspective might improve our understanding of the historical nature of disease entities as such, through the translational process that is communication.

To return to the concrete event of the symposium for a minute with Fleck in mind, we would like to stress that the participant’s communication throughout the two days of intense discussions, added up to something more than “just” new knowledge about the entanglement of distinct disease entities – even if this something has been difficult to pin down, name and process in our debates. Among the developing conversations and interventions was a shared agreement on the need to complexify disease biographies and shift them to an investigation of mingled disease histories and experiences. The cross-referencing of different diseases in documents, lives, and treatment approaches might be a starting point to go along this road, teasing out connections rather than obfuscating them through a categorical focus on single diseases. Another line of investigation focused on trajectories – be it the trajectories of patients navigating ward worlds, of researchers travelling between scientific funding opportunities and research fields, or between doctors, working in different countries and institutions from the hospital to the community clinic and the offices of the global fund. In line with much contemporary anthropological and historical scholarship, the focus on paradoxes, inconsistencies and failures proved to be another avenue of inquiry, opening up interesting perspectives on iatrogenicity, pharmaceuticalization, treatment possibilities and regimes of care, which go beyond problematizations that are possible in following single diseases. And lastly, infrastructures turned out to be essential to an epistemology of co-infection, be the infrastructures financial like the Global Fund, clinical like diagnostic tests, economic like scarcity approaches, or health systemic like access to and provision of care. Hybrid institutional forms of care and treatment provision and financing thereby indicate that not only the entanglement of diseases should be a starting point, but also the mélange of care provision and the functioning of health systems in global health.

We want to conclude by restating that Fleck’s epistemological insight became manifest in different ways during the symposium: firstly, disciplinary boundaries or thought communities – as between history, anthropology, and policy – stayed solid throughout the discussions, albeit not as unbridgeable contradictions or immutable epistemic lenses, but rather as productive tensions and epistemological liaisons, making new questions emerge, and thereby laying the basis for new ways of thinking. Secondly, the “epistemological obstacle” of TB/HIV was transformed in the process of joint investigation and discussion, multiplying what co-infection could and should be as a research object, yet solidifying single disease categories at the same time. Communication lead to the transformation of co-infection as an object of investigation, opening up the black box of the problem, thereby pointing to the many avenues of exploration and problematization instead of providing clear-cut solutions or definitions. As such, the symposium was the beginning of a conversation and of communication as translation, which is to be continued.

References

Fleck, L., 1981. Genesis and Development of a Scientific Fact. University of Chicago Press, Chicago.

Kontopodis, M., Niewöhner, J. and Beck, S., 2011. Investigating Emerging Biomedical Practices: Zones of Awkward Engagement on Different Scales. Science, Technology & Human Values 36(5):599 – 615.

Mayer, K.H., Dukes Hamilton, C., 2010. Synergistic Pandemics: Confronting the Global HIV and Tuberculosis Epidemics. Clinical Infectious Diseases 50:67– 70.

Pratt, Mary Louise. 1991. Arts of the Contact Zone. Profession 91: 33- 40.

Treichler, P.A., 1988. AIDS, Homophobia, and Biomedical Discourse: An Epidemic of Signification, in: Crimp, D. (Ed.), AIDS, Cultural Analysis, Cultural Activism. MIT-Press, Cambridge, Mass., 31–70.

Janina Kehr studied Anthropology and Political Sciences at the University of Göttingen and the University of California Santa Cruz. She received her PhD in Anthropology from the Ecole des Hautes Etudes en Sciences Sociales Paris and the Humboldt University of Berlin in 2012, with a dissertation entitled “A Disease Without a Future. An Anthropology of Tuberculosis in France and Germany” (2012)”. Since 2011, she works as researcher at the Institute of the History of Medicine in Zurich. Her new project looks at health affects and medical belonging in Europe, in investigating how two national public health systems, the UK in the North and Spain in the South of Europe, have progressively been interiorised by its population and are defended as a right by its citizens in times of crisis, being part of their social and political identity. 

Lukas Engelmann concluded his studies in History and Gender-Studies in Berlin in 2009. He received his PhD in History at the Humboldt University of Berlin in 2013, titled “AIDS as a clinical picture of disease. The normalization of an epidemic in the AIDS atlas” (2013). His dissertation engages with the visual history of AIDS/HIV, contributing to a broader perspective on visualizations in medial history and intervening with an interdisciplinary research design into the emerging field of the historiography of AIDS. From May 2014 on, Lukas Engelmann will be an appointed post-doc research associate at CRASSH, University of Cambridge, following the visual history of the Third Plague Pandemic in North and South America.

Image Credit: Cy Twombly UNTITLED II, 2005 (BACCHUS). ACRYLIC ON CANVAS, 317,5 X 468,6 CM

TB/HIV: Distinct Histories, Entangled Futures. Towards an Epistemology of Co-infection

by Claire Laurier Decoteau

University of Chicago Press, 2013, 324 pp.

The specter of “tradition versus modernity” returns as a conundrum for understanding and signifying HIV/AIDS in post-apartheid South Africa in Claire Decoteau’s sociological monograph, Ancestors and Antiretrovirals. Interpretive social scientists like Decoteau are well trained to referee this dueling dualism, which reappears in policy discourse, popular media, and peoples’ stories about their pasts and futures. The dualism does not always appear in the same form and is dependent on the discursive domain of its articulation, and the work of the social scientist is to situate its historical re-emergence in light of the many different meanings it may evince for different social groups. In the South African case of medical pluralism, “tradition” as indigenous healing, and “modernity” as biomedicine are uneasily paired and wielded in opposition to shore up projects of identity formation on levels of individual, community, and nation. The two medical systems evince a broader “postcolonial paradox” that haunts peoples’ subjective choices for healthcare and reveals their biopolitical inscription.

The postcolonial paradox as enacted by the ANC state reflects “a simultaneous need to respect the demands of neoliberal capital in order to compete successfully on the world market and a responsibility to redress entrenched inequality, secure legitimacy from the poor, and forge a national imaginary” (7). Through a critical analysis of neoliberalism focused primarily on state and non-state organization discourses, Decoteau traces how tradition and modernity were used as, “powerful tools in the tricky political maneuvering required of leaders who [had to] represent the interests of the people while subscribing to the economic policies of global capital” (14).

Decoteau shows how Presidents Thabo Mbeki and Jacob Zuma differently trafficked in tradition to cohere politico-cultural capital nationally and globally. The former was zealously anti-imperialist and promoted indigenous healing solutions to the emerging problem of HIV, aligning with unorthodox Western scientists to deny the efficacy of biomedical ARVs and delaying its rollout to the public. The latter, Zuma, gained eventual traction with the increasingly ill majority as Mbeki’s traditionalism was globally scorned. By simultaneously embracing modernist tropes in biomedical solutions to HIV and human rights, as well as shoring up his own traditional identity as an undereducated ethnically Zulu man, Zuma was able to garner popular support to succeed the presidency. “Wrapped up in the promises the nationalist fantasies of independence foretell,” the masses continued to vote for the ANC and support its leaders “because they desperately [needed] something to hope for” (17). Similarly, White (2012) argues popular affect for Zuma was structured by political economy: “the dynamics of identification with Zuma’s ethnic person should be understood as features of a broadly post-Fordist social situation.”

Zuma’s embrace of modernity in biomedicine and human rights, of course, followed up on years of successful community activism and legal battles against the Mbeki state and pharmaceutical manufacturers by the non-state organization, the Treatment Action Campaign (TAC). TAC initially struggled to leverage wider legitimacy because of its administration’s majority white racial make-up, a facile corollary to the tradition-modernity divide, but became instrumental in constituting biomedical hegemony for national health policy and programming.

For Decoteau, the eventual supremacy of biomedicine in health policy shifts the nation toward a model of “biomedical citizenship” where the population may access healthcare by adopting Foucauldian biomedical technologies of the self. For those at the social margins, these technologies become the means to access life itself. Antiretroviral therapy, CD4 checkups, participation in salvific NGOs, and adhering to prescriptions, “like a machine” in the words of one informant, feign inclusion in a healthcare system that is still exclusionary. The socially marginal are expected to participate responsibly and entrepreneurially, even if “their lives are subsumed by constant risk and unmooring contingency” (110). This shift in citizenship is congruent with the postcolonial yoke of the global neoliberal “rationality of rule.” “Capitalism is… implicated, constituted, and transformed through” (11) several social forces, rather than their singular foundation, and she notes that Mbeki, Zuma, and the TAC all channeled in capitalist-inspired and marginalizing projects, even if indirectly. “By granting minimal inclusionary provisions on the basis of behavioral change, the state and civil society are absolved of responsibility—they have washed their hands. If people die, it’s their own fault” (161).

In documenting the discursive political strategies involving tropes of traditional and modern healing, Decoteau shows how both state and non-state actors worked to cement their ideologies. Despite their macro-level, structural extensions, “the failures and fissures involved in population regulation and processes of incorporation [left] open important spaces of potential for radical social change” (11). Beyond a nuanced reading of the holes in state and civil society discourses, she takes on a micro-level analysis of indigenous healers and “the poors,” members of social movements “who fight on the front lines of a war against neoliberal capital and the postcolonial compromises made by the state and its ruling elite” (15). Interview and focus group data with these individuals and others from activist and health NGOs constitute her ethnographic sample.

The first chapter grounds the obstacles behind this presumed “fault” by taking us into the slums of Sol Plaatjie and Lawley. Cold winds and dust blow through patchy shack walls. Households undergo forced and violent removals. “Upgrades” to cube-like smaller government flats are unannounced or never materialize. Electricity and water are only accessible through a prepaid system and long queues, and non-nutritious meals are prepared over noxious paraffin gas stoves. There is shit in the streets, literally, from poor or non-existent sanitation systems. There is also a malaise over the decline of neighborly exchange and moral relations of ubuntu, jealousy, and stigma. People face an ontological vulnerability, “a pervasive fear of something absolutely ubiquitous but unidentifiable,” along with “general unease about the loss of certain cultural practices and traditions” (70). Supported by fourteen striking pictures of the slums and her informants who lived there, eight tables derived mostly from the author’s own community survey data and many interview quotes, she paints a rough, convincing argument that poverty and AIDS are mutual pandemics: environment and wealth shape overall health.

Chapters four and five show especially how the poor move beyond discursive divisions between tradition and modernity. In the “Politicization of Sexuality,” Decoteau evidences that gender and sexuality have been socially reconstructed and revalued in young peoples’ exchange relationships, thus complicating public health concepts of transactional sex. In “Hybridity,” the traditional-modern healing dualism is said to generate culturally hybrid subjectivities for the poor: it “produces a whole series of disavowed hybridities…  [P]eople infected with HIV are asked to ‘choose’ either indigenous or biomedical approaches to healing, but instead defy the state and the biomedical community by using both forms of healing simultaneously” (13). This chapter opens with several rich but short cases of people who have utilized both approaches. Their cases aim to align with descriptions of indigenous ontology in chapter one and its hybrid forms in chapter five, but the presentation of ontology is more a reiteration of secondary source literature, and concepts of bodily substances’ flow and permeability are not generally made concrete in sustained descriptions of peoples’ experiences with traditional healing. Fuller biographies and life trajectories of Pheello, Thulani, and Nozipho, or key others whose stories illuminate the text, rather than select interview quotes, would further realize how hybridized traditional-modern healing is affirmatively practiced and strengthen the linked micro- and macro-level analyses.

It was surprising to not come across more about Christianized faith-healers, congregations, or their ethical publics of healing in urban spaces, given their regional historical popularity, ubiquity and traffic in traditional materia medica especially in Zionist churches. One key informant Pheello is even said to visit a faith healer, but we don’t learn much more about the encounter. With scholars showing the powerful utility of Christian public life and NGOs for HIV/AIDS in Africa (Englund 2011, Pfeiffer 2004, amongst others), those who work on the new social movements and precarity might begin to consider how religion is real force—dialectical or otherwise—that differently animates political-economic life (cf. White 2013, Marshall 2009). The ancestors also don’t reveal their presence much beyond the book’s title, remaining spectral rather than vehicular for healing self and community through social action and embodiment.

Despite these points, which come from a cultural anthropologist of religion, Ancestors and Antiretrovirals is a highly accessible book for non-sociologists that does not sacrifice analytic rigor in its presentation of peoples’ lives. Decoteau is a gifted photographer and purveyor of mixed methods who skillfully interlaces seemingly divergent theorists to articulate complex distinctions and integrations of tradition and modernity. The two are more synergistic than syncretic for the poors and local healers, creating something historically new and offering possibilities to reach beyond what is prescribed by prevailing systems of governmentality. I would definitely teach several chapters in courses on South Africa, medical anthropology and medical sociology.

Casey Golomski, PhD (Brandeis University, 2013) is currently appointed at the University of Massachusetts Boston. He is a cultural anthropologist who collocates the roles of medicine and religion in socioeconomic reproduction. In June 2014 he will be a Postdoctoral Fellow at the University of the Witwatersrand, Johannesburg, in the Department of Anthropology, co-initiating a research unit, “Life Course, Obligation, and Dependency: Ethnographic Perspectives on Intergenerational Justice in South Africa.”

Works cited

Englund, Harry, ed. (2011) Christianity and Public Culture in Africa. Athens: Ohio University Press.

Marshall, Ruth (2009) Political Spiritualities. Chicago: University of Chicago Press.

Pfeiffer, James (2004) “Civil Society, NGOs, and the Holy Spirit in Mozambique.” Human Organization 63(3):359-372.

White, Hylton (2012) “A Post-Fordist Ethnicity: Insecurity, Authority, and Identity in South Africa.” Anthropological Quarterly 85(2):397-428.

White, Hylton (2013) “Spirit and Society: In Defence of a Critical Anthropology of Religious Life.” Anthropology Southern Africa 36(3-4):139-145.

The conference held two formal sessions highlighting new work in this area entitled: Viral Politics: HIV Criminalization & Social Inquiry and Social Science, Criminal Law and HIV Transmissions Risks: Novel Research Perspectives. In this article I summarize highlights and key findings from these presentations, and examine some of the methodological approaches and theories employed by social scientists working on the ‘medico-legal borderland’. I also provide a brief critical analysis in order to pose questions for future potential inquiry.

The medico-legal borderland

Social research into HIV criminalization is most often situated within the theoretical and discursive space described by Timmermans and Gabe (2003) as the ‘medico-legal borderland’.  The medico-legal borderland emerges from the intersection of the medical and the legal wherein both forms of knowledge and power join together to constitute new regimes of knowledge; ones that produce hybrid legal and medical subjects who are governed through normative knowledge on health and illness, as well as legal regulation, discipline and forms of social control (Mykhalovskiy, 2011). This intersection of crime and health contains elements of both realms but cannot be simply reduced to either one. The medico-legal borderland itself constitutes a hybrid disciplinary environment in which state institutions mobilize medical knowledge for legal purposes, and where the medical becomes intertwined with other mechanisms of power – both legal and extra-legal. As highlighted by HIV criminalization scholar Eric Mykhalovskiy (2011), Timmermans and Gabe use the term medico-legal borderland to “decry the absence of dialogue between criminology and medical sociology and to encourage critical analyses of sites in which health care and criminal-legal practices intersect” (pg. 674, 2011).

Day One: Deviance, Advocacy & Model Laws

During the first session at the ASSHH conference, Trevor Hoppe presented his doctoral work titled: ‘From Sickness To Badness: Punishing, Regulating, and Controlling HIV in Michigan’. Michigan is one of the 24 American states to have enacted criminal laws requiring that people living with HIV disclose their HIV status prior to engaging in sexual acts with partners. In the presentation, Hoppe employs sociological theories of social control and mobilizes the work of Conrad and Schneider (1980) to examine how people with HIV are constituted as deviants to be punished within the juridical apparatus of Michigan, USA.  Conrad and Schneider’s ‘Deviance and Medicalization: From Badness to Sickness’ (1980), elaborates how the medicalization of deviant behaviour has been organized socially. This includes how issues such as attention deficit, learning disabilities, drug use and alcoholism have been transformed from being understood as acts of deviance, to those that are regulated through medical ways of knowing.

In an attempt to build on the work of Conrad and Schneider, Hoppe’s research reveals that medicalized knowledge of HIV has no traction in Michigan courts where legal decisions are guided by fear, stigma and moralistic judgements, thus: “From Sickness to Badness”. Hoppe argues that the decisions made under Michigan’s HIV disclosure law are not formed through benevolent medical or public health considerations (i.e. to prevent further HIV transmissions), but rather, they are formed by punitive and moralizing narratives that frame people living with HIV as social deviants who need to be under state control. Hoppe’s theoretical engagement ends there and one is left thinking: has HIV not always been akin to badness?

Additionally, it is unclear in Hoppe’s project what is to be achieved theoretically through the polarization of sickness and deviance. Under a regime of medicalization, are people living with HIV not also governed by law? Hoppe’s work suggests that a more nuanced investigation is required of the ways in which medical and legal knowledges intersect to create complex hybrid rationalities of governance.

Hoppe’s work primarily consists of a case-by-case thematic analysis of prosecutorial documents to highlight the court’s perpetration of moralizing tropes towards positive people as the violent criminal “other”.  However, Hoppe makes up for what is lacking in the project’s theoretical rigour with his greatest contribution to the field: bringing to light detailed evidence from 58 felony HIV non-disclosure convictions in Michigan through undertaking extensive research from police data and media archives. Hoppe’s research constitutes 95% of all convictions between 1992-2010 in the state. In many of these cases, in sentencing, HIV is taken into account by judges in the same way as the use of a violent weapon. Hoppe presents a number of disheartening scenarios in which people living with HIV are charged and prosecuted for variety of sex acts, even an act of vaginal to nasal penetration in which a stripper was prosecuted for rubbing her labia on an undercover police officer’s nose.

The injustices that Hoppe’s work reveals leave one wanting more in terms of understanding what drives such punitive and state-sponsored stigma. There is no doubt that the work of social scientists is to document the forces that marginalize so as to interrogate and reveal oppressive power structures. But if our work is merely descriptive and not aimed at revealing how such events have come to be in the first place, at what point does such straightforward documentation become gratuitous? Since the beginnings of the epidemic, people living with HIV have been framed as social outcasts, deviants and criminals. What new contributions can we make to the body of social research in this area to advance understandings of how and why regimes of medical and legal governance are historically, socially, culturally and economically constituted?

The following presentations in the session were by Canadian researcher, Eric Mykhalovskiy, an Associate Professor at York University, and by Daniel Grace, a post-doctoral researcher with the University of British Columbia and visiting fellow at the London School of Hygiene and Tropical Medicine. Both researchers employ forms of feminist sociologist Dorothy Smith’s (1987) institutional ethnographic inquiry to examine how relations with institutions structure people’s everyday lives. Because of its focus on mundane everyday activity, as well as broader social, economic, political and cultural power relations, institutional ethnographic inquiry can offer both a useful and critical micro and macro analysis to explore aspects of the criminalization of HIV transmission, exposure and non-disclosure.

In the presentation: HIV, Criminalization, and the Limits of Science: Rethinking Activism, Eric Mykhalovskiy explored the Canadian activist milieu in reaction to the recent Supreme Court R v. Mabior decision and disjuncture that occurred between biomedical knowledge of HIV and judicial decision-making. Building on the work of sociologist George Smith, Mykhalovskiy’s intervention elaborated a reflective ethnographic analysis of activists who mobilized in reaction to the 1998 Supreme Court R v. Cuerrier decision, and the consequences of the promotion of “science-based” law reform. In “Political Activist as Ethnographer”, George Smith (1990) proposed grass-­roots political organizing as a research method aimed at providing communities living with HIV an opportunity to step outside of their current realities in order to change the harmful social conditions that lead to structural violence and forms of oppression.  The work of the activist ethnographer is then to extend and promote knowledge to help themselves and others understand how “a ruling regime works with a view to transforming it” (Smith, 1990). Mykhalovskiy follows this tradition in the Canadian AIDS activist milieu where his work aims to counter the increasing punitive nature of legal governance of people with HIV. Most recently he has been working on an Ontario-wide campaign to call on the Attorney General to develop guidelines for prosecutors in HIV non-disclosure cases.

In 2012, the highest court in Canada extended the role of law in relation to HIV non-disclosure: now legally requiring the use of a condom and a ‘low viral load’ if someone does not tell a sex partner their HIV-positive status. Without both a condom and a ‘low viral load’ consent is legally vitiated. This ruling ignores the fact that many people are not able to use condoms for complex reasons, or achieve a ‘low viral load. Interpreted by activists, this ruling over-extends the law, puts the legal burden solely on people living with HIV, and is inconsistent with years of HIV prevention work.

Previously, the law had been murkier: the 1998 Supreme Court decision required that someone with HIV must disclose if the sexual behaviour they engaged in posed a “significant risk” of transmitting HIV to their partner(s). But the court did not define “significant risk” and this led to years of uncertainty for people living with HIV and many inconsistent charges and prosecutions. Growing rapidly since the early 1990s, Canada has seen approximately 150 charges faced by 140 defendants in relation to non-disclosure – with a disproportionately high conviction rate.  Those who are prosecuted are often added to a lifetime sex offender registry and have known to be held in what is called ‘protective custody’ or ‘administrative segregation’.

As Mykhalovskiy elaborates, to quell the growing number of charges and prosecutions, activists’ had strategically called for “science-based” law reform aiming to ensure more consistency and greater restraint from the courts. An example of such reform would be ensuring that charges could only be laid when there was a scientific basis for transmission to have occurred and where there was wilful intent or reckless behaviour involved. However, what resulted is that the Supreme Court’s 2012 decision interpreted scientific knowledge of HIV risk and transmission using a legal rationality that views non-disclosure as sexual assault. Such logic can be only understood through looking back to the legacy of second wave feminist legal scholars, who invoked ‘consent’ as a locus of governance, thus expanding the role of the state juridical and punitive apparatus so as to protect women from rape and sexual assault. Mykhalovskiy thus calls into question the activist strategy of mobilizing scientific knowledge on HIV in the context of this legal rationality because of the way it backfired in the Canadian context, resulting in a new legal test that is inconsistent with years of transmission science and HIV prevention work.

Another contribution of this presentation is the examination of the person with a low viral load (and conversely the person who cannot achieve a low viral load) as new medico-legal subjects that the Supreme Court’s decision constitutes. Or what the session discussant Martin French noted as the emergence of “techno-scientific identify profiles cloaked in jurisprudence”.  As a technique of governance, the judicial management of viral load will be increasingly important to understand for social researchers, especially in the context of ‘treatment as prevention’ regimes, viral load mapping projects, and with the development of new technologies of therapeutic surveillance.

Mykhalovskiy’s reflexive approach is encouraging in the wake of the discouraging Supreme Court decision. More work like this is needed to interrogate and evaluate strategies to counter the increasingly punitive climate for people with HIV. Mykhalovskiy’s work on the strategy of law reform employed by activists in the HIV social movement suggests that a number of questions remain. With the current reality of the negative consequences of second wave feminist legal reform related to how consent now legally frames HIV non-disclosure, what are the unforeseen impacts that could result from AIDS activists-led legal reform for prosecutorial guidance? Who could get left behind with the new prosecutorial guidelines? And will such guidance for prosecutors help draw a further dividing line between the sick and the well, or the virally detectable and the virally undetectable?

In the case of Daniel Grace’s doctoral thesis work: ‘Best Practice as Coordinating Genre in the Criminalization of HIV Transmission’, the researcher proposes a form of transnational institutional ethnography through examining the proliferation of USAID-written omnibus model laws on HIV that were adopted across 15 west and central African nations between 2005-2010. The model laws include a provision for criminalizing the transmission of HIV and are known as the USAID/Action for West African Region (AWARE) legislation. In Grace’s work, the researcher notes that the laws act as a “pre-operative” and “harmonizing” text that were claimed to be “best practice” grounded in “human rights”. As a legal instrument the model legislation was also promoted as a simple ‘one-size fits all’ solution for legislators working to address HIV/AIDS. Grace calls into question the mobilization of “best-practice” and “human rights” language and elaborates that through his international fieldwork, many policy actors view these transnational legislative practices as harmful and are now actively working to counter them.

A critical analysis of the transnational macro-level coordinating and governance function of “best practices” in the global AIDS response is refreshing. However, the presentation left me wondering how these model laws are so easily adopted. I was left wanting a better sense of the geopolitics, political economy and colonial aspects of this practice, particularly in the context of the American neo-colonial project aimed at exporting forms of morality to African nations and at continuing forms of aid dependency. Grace’s project is a large scale one, and it is likely these analyses are in the work but just did not come out in the short span of the conference presentation. It will be important for social scientists to continue to track the social impact of this legislation in the region to better understand the consequences of this American legislative “best practice” on the lives of people living with HIV.

Day Two: Service Provider Perspectives & Viropolitics

The following day of the conference saw the second session during which research was presented from the USA and the UK. The UK is an interesting case, as England and Wales only prosecute ‘intentional’ and ‘reckless’ transmission of HIV. In 2008, the Crown Prosecution Service established policy guidance for prosecutions, which only allows for prosecutions in cases for which a transmission has occurred.  As such, there are notably fewer prosecutions (a total of 17 prosecutions as of 2010) than in countries such as Canada and the USA. For some, the example of the UK is regarded as a progressive law reform achievement and has resulted in the push for prosecutorial guidance in other countries.

Catherine Dodds, researcher from the UK’s Sigma Research and the London School of Hygiene and Tropical Medicine presented her team’s research entitled Keeping Confidence: HIV and Criminal Law From Service Provider Perspectives. Dodd examines the medico-legal borderland from the perspective of service providers who support people living with HIV.  As a result of the legal environment, Dodd’s qualitative research with 75 service providers reveals a conflict between the professional liability and the ‘duty of care’ for those they work with, and the ‘duty to the law’, or the legal liability to report a client if they fear they could be having unprotected sex. Dodd’s work shows how many providers had a basic understanding of the law, but they lacked a nuanced understanding so as to effectively communicate legal obligations to clients.

With this project, the roles of providers have become conflicted which, Dodd notes, creates professional uncertainty around service provision and the potential new burden that has emerged for them to communicate accurate legal information.  In some cases, providers now see themselves as having to enforce the law and/or build legal literacy (re: people living with HIV’s criminal law obligations), as well as providing care and support. This has complicated service provider/client relations and has potentially negative consequences for the delivery of care. In a small number of instances this issue has directly impacted how people do their jobs, as a few providers noted that they have stopped detailed note-taking during client sessions to avoid the potential for health records to be subpoenaed.

As service providers’ jobs are becoming entangled with new legal obligations, Dodd’s work is important in expanding understandings of the impacts of criminalization on the services that people living with HIV access to support their health and wellbeing. Additionally, this project is an important step toward revealing how the day-to-day juridical management of people living with HIV is increasingly diffused throughout extra-legal actors in society.

Martin French ended the session with his presentation titled The Viropolitics of HIV Testing: Counselling and Criminalization in Tennessee. French – a new faculty member in the Sociology Department at Montreal’s Concordia University – presented on his fieldwork in the American state of Tennessee with HIV voluntary testing and counselling providers. The state leads all other American jurisdictions with 48 prosecutions related to various forms of HIV criminalization between 2008-2010. French’s work concerns a number of issues specific to the negative impact that HIV criminalization has on public health outcomes. This includes examining how hybrid legal and medical principles result in promoting HIV stigma, and examine what occurs when public health knowledge, such as health records, are “recoded” in a juridical context.

In his work, French reveals how the macro level punitive legal environment negatively impacts the micro level practice of voluntary HIV testing and counselling.   Through qualitative interviews with Tennessee service providers, French describes the emerging sense of anomie produced by the apparatus of criminalization. French notes that the counselling milieu has been theorized in the past as a site of normalization, in which medical knowledge from across populations is measured against the individual to evaluate the “normal” and “abnormal”. Under criminalization, this emerging anomic environment of normlessness leaves people living with HIV and service providers who work with them in a state of increasing stress, confusion and uncertainty.

Seeking to advance conceptions of the biopolitical, French is proposing what he has labelled “viropolitics”, or the “latent indeterminacy prior to biopolitics”. Biopolitics aims to describe a situation in which human biological life becomes the “object of political strategy” (Foucault, 2007, pg. 1). In the early 2000s Achille Mbembe took biopower to the grave by elaborating the concept of ‘necropolitics’. With necropoltics, Mbembe seeks to elaborate “under what practical conditions is the right to kill, to allow to live, or to expose to death exercised?” (Mbembe, 2003, pg. 2). For French, viropolitics is at the analytic margins of biopolitics and necropolitics. His work seeks to further develop and mobilize this concept, which would be a theoretically and analytically useful tool for revealing and understanding the emerging hybrid forms of medico-legal governance that people living with HIV face.

The second ASSHH conference provided a useful platform for taking forward the concept of the medico-legal borderland. It promises to be a useful tool for thinking about how the complex intersection of regimes of medical and legal knowledge shape responses to the HIV epidemic. Social scientists play an important role in this area and by examining the criminalization of HIV at the medico-legal borderland our field will continue to expand and interrogate these complex relations so as to understand how criminal law shapes the social relations of people living with HIV, health care workers, service providers, other actors in the global response to HIV.

Alex McClelland is a doctoral student at the Interdisciplinary Centre for Studies on Culture and Society, Concordia University, Montreal, Canada. His work focuses on social aspects of HIV, social theory and critical legal studies. During his doctoral studies, Alex is examining the lives of people who have been criminally prosecuted in relation to not disclosing their HIV-positive status. He is supported by the Canadian Institutes for Health Research (CIHR). @alexmcclelland

References:

Conrad, Peter & Joseph W. Schneider. [1980]1992. Deviance and Medicalization: From Badness to Sickness. Philadelphia, PA: Temple University Press.

Foucault, M., Senellart, M., & Davidson, A. I. (2007). Security, Territory, Population: Lectures at the Collège de France, 1977-78. Basingstoke, UK; New York, NY: Palgrave Macmillan.

Mbembe, A. (2003). Necropolitics. Public Culture, 15 (1), 11-40.

Mykhalovskiy, E. (2011). The problem of “significant risk”: Exploring the public health impact of criminalizing HIV non-disclosure. Social Science & Medicine, 73(5), 668-675.

Smith, Dorothy. (1987). The Everyday World as Problematic. Toronto: University of Toronto Press.

Smith, G. (1990). Political Activist as Ethnographer. Social Problems , 37 (4), 629-­‐648.

Timmermans, S., & Gabe, J. (2003). Introduction. In Timmermans, S., & Gabe, J, Partners in health, partners in crime: Exploring the Boundaries of Criminology and Sociology of Health and Illness. Oxford: Blackwell. [introduction]

Two launch events for the proposed collective will take place at the ASSHH conference in Paris being held from the 7th to the 10th of July. We hope that you will join us for one or both of the events to join in the conversation and to offer your voice to this newly forming collective.

1. Sunday the 7th of July: There will be a roundtable event to introduce the networks, to share ideas and discuss emerging themes in our work and to begin to set an agenda for collective and international discussion.
2. Monday the 8th of July: There will be a cocktail party for early career scholars to meet informally, discuss ideas and forge connections. Attendance at the Sunday event is not a prerequisite for participation at the event, which will focus on building networks of support and knowledge sharing more broadly.

Please sign up below to express your interest in joining the network and participating in the Paris events. If you cannot attend the Paris conference, but are still interested in joining the collective, we would still appreciate a response from you to indicate your interest in joining our mailing list and participating in future network events.

The early careers scholars events at ASSHH are being jointly organised by the Interdisciplinary Network on HIV and Innovation (UK), the Network of Young Scholars on Social Sciences and HIV/AIDS (France), and the Transcriptions Forum.

• The Interdisciplinary Network on HIV and Innovation (United Kingdom) was established in 2008 as part of the HIV Project led by Marsha Rosengarten at Goldsmiths College, University of London.  As a collective we encourage interdisciplinarity and collaboration in order to open up debate across disciplines and engage the complex problematic of HIV/AIDS in its various guises using theory such as Science and Technology Studies (STS) and an imaginative approach to novel research methods.
• The Network of Young of Scholars on Social Sciences and HIV/AIDS (France) is an interdisciplinary network of approximately 80 members that was created in 2008 to advocate for collective activities and for the professionalization of young scholars. Its members organise seminars, conferences, thematic workshops and writing/publication workshops. The network is mainly supported by the French National Agency for AIDS research (ANRS) and the Young Scholars Network on Health & Society (Réseau Santé & Société), which also provides support for scientific activities.
• Transcriptions is a collaborative forum for critical enquiry on HIV/AIDS and global health: experiment, ethics, and practice. The site, hosted by Somatosphere, is designed as a space for scholars and activists, policy makers and practitioners working at the intersections of the biosciences, social sciences, public health, and the humanities to engage in critical conversation and to take each other up on important issues that cross disciplinary divides – methodological, conceptual, and programmatic.

Please sign up here to express your interest in joining the network and participating in our Paris events:

Two launch events for the proposed collective will take place at the ASSHH conference in Paris being held from the 7th to the 10th of July. We hope that you will join us for one or both of the events to join in the conversation and to offer your voice to this newly forming collective.

1. Sunday the 7th of July: There will be a roundtable event to introduce the networks, to share ideas and discuss emerging themes in our work and to begin to set an agenda for collective and international discussion.
2. Monday the 8th of July: There will be a cocktail party for early career scholars to meet informally, discuss ideas and forge connections. Attendance at the Sunday event is not a prerequisite for participation at the event, which will focus on building networks of support and knowledge sharing more broadly.

Please sign up below to express your interest in joining the network and participating in the Paris events. If you cannot attend the Paris conference, but are still interested in joining the collective, we would still appreciate a response from you to indicate your interest in joining our mailing list and participating in future network events.

The early careers scholars events at ASSHH are being jointly organised by the Interdisciplinary Network on HIV and Innovation (UK), the Network of Young Scholars on Social Sciences and HIV/AIDS (France), and the Transcriptions Forum.

• The Interdisciplinary Network on HIV and Innovation (United Kingdom) was established in 2008 as part of the HIV Project led by Marsha Rosengarten at Goldsmiths College, University of London.  As a collective we encourage interdisciplinarity and collaboration in order to open up debate across disciplines and engage the complex problematic of HIV/AIDS in its various guises using theory such as Science and Technology Studies (STS) and an imaginative approach to novel research methods.
• The Network of Young of Scholars on Social Sciences and HIV/AIDS (France) is an interdisciplinary network of approximately 80 members that was created in 2008 to advocate for collective activities and for the professionalization of young scholars. Its members organise seminars, conferences, thematic workshops and writing/publication workshops. The network is mainly supported by the French National Agency for AIDS research (ANRS) and the Young Scholars Network on Health & Society (Réseau Santé & Société), which also provides support for scientific activities.
• Transcriptions is a collaborative forum for critical enquiry on HIV/AIDS and global health: experiment, ethics, and practice. The site, hosted by Somatosphere, is designed as a space for scholars and activists, policy makers and practitioners working at the intersections of the biosciences, social sciences, public health, and the humanities to engage in critical conversation and to take each other up on important issues that cross disciplinary divides – methodological, conceptual, and programmatic.

REMINDER: Closing date for abstract submission is on the 01 February 2013, please remember to go online and submit your abstract to meet the deadline.

HOW to SUBMIT
Submissions for abstracts will be available on ASSHH conference website www.asshhconference.org between 1 November 2012 and 1 February 2013.  Contact details of the programme organising committee and conference administration are available at www.asshhconference.org

For the 2nd International Conference, for the Social Sciences and Humanities in HIV we invite papers that address the theme of ‘KNOWING PRACTICES’. This dual concept poses questions about the multiple practices that comprise the dynamics of the epidemic and how the practice of knowing itself, is engaged and operationalised. ‘KNOWING PRACTICES’ refers to:

1. The practices that produce, reproduce and transform the social worlds in which people live. This includes what knowledge we have of the forces shaping the epidemic – whether social, structural, geographic, historical, political or economic – and their connection to practice; and
2. The different ways of ‘doing science’ or knowing (and unknowing), that is, on the ways in which we as scientists claim to have evidence.

We hope this theme will be sufficiently broad and, at the same time, nuanced in reference to the work of the social sciences and humanities to elicit papers on a variety of topics. Within the theme of ‘KNOWING PRACTICES’, we ask what sorts of knowing and un-knowing practices are assembled and enacted as ‘authentic’, ‘valid’, ‘verifiable’? What role is there for the social sciences and humanities in the increasingly biomedical vision of the future by science and its funders? Indeed, in what ways does the promise articulated at AIDS 2012 – that biomedicine will eradicate HIV and end the epidemic – put in place strategies that simultaneously evade the complexity of the everyday nature of living and working with HIV? How can the social sciences and humanities produce knowledge that has an impact on the many forces that shape the epidemic?

While papers that address the conference’s theme ‘KNOWING PRACTICES’ are especially relevant, papers contributing to the advance of rigorous social scientific and humanities approaches to HIV and take other perspectives on the social sciences and humanities are also encouraged.

Conference Papers/ Full Sessions/ Round Table Discussions
We encourage papers/discussions at all levels of analysis and from paradigms and perspectives that address the following:
• The biomedical claims of ‘turning the tide’ to end the epidemic
• Novel knowing practices within science, social science and/or communities
• Relationships among biomedical knowledge, social-scientific knowledge, local knowledge and community know-how
• How social and humanities knowledge, perhaps together with biomedical knowledge, can be used to develop more effective responses to the epidemic
• The performative work of knowing practices (for example in the use of racial, ethnic and gender categories) as they also involve not-knowing (for instance,    not knowing socio-economic difference through gender classification etc.)
• Issues of collaborating with different knowing practices
• The knowledge we have of the different forces shaping the epidemic and how we conceive their connection to practice
• What we know of global disparities in socioeconomic and/or other resources, and how well this knowledge is actioned in responses to the epidemic
• The ways in which notions of ‘the local’ and ‘the global’ inform each other and the implications of this for funding, policy and programming
• If knowledge is not neutral and but generative in ways that enact and affect different interests, how knowing practices give shape to the local and global dynamics
• The ways in which particular agencies or groups bring about changes in social, economic and political forces that shape the epidemic and/or responses to it
• What we know about risk and care practices in different contexts and how we can ensure our methods of knowing are appropriate to local needs

Submission of Abstracts and Session Proposals
Individual abstracts and proposals submitted for full sessions or round table discussions should emphasize how they will make original and timely contributions to any of the themes listed above or how they demonstrate the contribution of the social sciences or humanities to any aspect of the HIV epidemic. Submissions are a maximum of 1500 characters. Spaces count as a character.

Abstracts for individual papers (electronic submission of individual oral papers)
Each abstract (maximum of 1500 characters) should include: title; the main arguments; methodology where appropriate; and contribution to the HIV and AIDS field. The title of the abstract should be followed by the author’s name or (where a collaboration) a list of authors’ names each with their institutional affiliation or status (e.g. independent scholar) and full contact details (postal and electronic). Please list five key words to assist the programme chairs to group individual papers into sessions. All presentations will be allowed 20 minutes, and each session will include time for discussion.

Abstracts for full sessions (email proposal plus electronic submission of individual abstracts)
If you wish to submit a full session, please send an email to programme@asshh.org that includes:

1. Title for session;
2. Brief abstract of the purpose of the session (up to 1500 characters)
3. Name of organiser; and
4. Name, title and abstract of each paper.

Each abstract to be included in a ‘full session’ should be submitted as an individual abstract as above and should be a maximum of 1500 characters. It is necessary for the organiser/s of the ‘full session’ and each presenter in the session to register individually.

Session proposals should be organized around one and-half-hour time slots. A typical session will contain three or four papers of not more than twenty minutes each, with a discussant/respondent and time for open discussion. The programme chairs may assign additional papers to proposed sessions with only three or fewer papers.

Abstracts for round-table discussions: (electronic submission of single abstract)
In addition to the abstract driven sessions, we are keen to hold round-table discussions on current themes being debated across the HIV research and policy fields or emerging through community action. If you are interested in organizing a round-table discussion/forum please submit an abstract of maximum of 1500 characters indicating the topic, names of participants and their likely contribution. If selected, the conference organisers will contact you with a request for further details, including the names of speakers for the forum. Time allowed is a maximum of ninety minutes.

Queries

Programme: programme@asshh.org (relevant queries will be submitted to specific Chair)
Registrations: registrations@asshh.org
Scholarships: scholarships@asshh.org
General: info@asshh.org
Visas: mkapfer@msh-paris.fr

Expansions

Where do things stand with PrEP?
Previous Broadsheets covered the U.S. FDA’s approval of Truvada, the first ARV  prescribed as routine, pre-exposure prophylaxis.  PrEP continues to make news, especially now as an issue of the acceptability of implementation. The Body’s slide show of opinions from the HIV community are largely positive about PrEP as an additional ‘tool in the interventionist toolkit.’  Many of the responders do qualify their support (very carefully, it might be noted) by expressing cautions, such as concerns about associated costs (especially when compared to ARV coverage for those already infected), behavioral implications, and being sure that PrEP does not supplant other strategies. The HIV+ community also expresses mixed opinions; those who are more critical of PrEP do not want the challenges of adherence and drug toxicity to be taken lightly.

Another iteration of next-generation stories are those intending to clarify just how PrEP should be used.  One recent investigation asks about the extent to which PrEP requires perfect compliance (apparently it does not); another published in PLoS and reviewed by AIDS MAP, studies the costs and efficacy of PrEP compared to other intervention strategies, as a tool for middle-income countries like Peru.  Despite significantly reduced infection rates through targeted use, scientists are cautious about its use without 100% treatment coverage for individuals with existing HIV infection.   An overall impression generated by these studies is that while PrEP is an intervention that may have been given legs by the normative drug approval process, one that imagines use decisions as a matter taken up by providers and patients, Truvada’s use cannot be separated from policies that determine larger health service delivery issues, and HIV/AIDS intervention strategies.

The most vocal group that has to-date opposed Truvada is the AIDS Healthcare Foundation (AHF), who continues to wage and also expand their critical campaign.  In recent months, AHF claimed victory when the FDA introduced language that more tightly regulated Truvada’s use.  AHF also focuses its vociferous protests directly onto Truvada’s drug maker, Gilead, and members of the company’s leadership.  Protesting in the streets,  AHF points out the massive profits Gilead will make from the drug.  In a further strategic move, AHF is currently calling upon U.S. state health departments to exclude from Medicaid reimbursement the newly FDA approved four-in-one Gilead HIV drug, Stribild, from formularies until the company lowers costs to peer (Atripla) drug pricing. (In an ironic turn, other circles praised Gilead in October for their philanthropic work in Africa.)

HIV Diagnostics
Another area of expansion receiving attention is diagnostic technology. In July, the FDA approved the Oraquick at-home HIV testing kit, which is now available in stores. Time Magazine named the test one of the best inventions of 2012, and basketball great, Magic Johnson’s formal endorsement received wide coverage (here too and on POZ).  Like PrEP, home-based testing is not only promoted, but user acceptability is also being studied.  Stories list groups’ likelihood of use (AIDS MAP reviews a Spanish study and use by MSM (picked up by KFF) and an e-Health story advocates its uptake in South Africa).

Another point of interest is the recent improvement to rapid testing accuracy and cost.  Insite links to an article from the Chicago Tribune about developments made by Northwestern University scientists, and the Gates Blog cites a new test from Imperial College London (linking to Reuters) that can be used to diagnose HIV and other diseases (AIDS MAP covers too).

HIV and Healthcare Systems

Zimbabwe announced a step-down of HIV initiation from doctors to nurses, reported and reviewed by Plus News. The story was picked up by KFF, and e-Health considers using this arrangement in South Africa.

Indonesia’s prospective universal healthcare coverage will include HIV treatment, featured in a gushing UNAIDS story, summarized by KFF, and reposted on Insite.

AIDS MAP and others posted that the UK’s health service delivery will now make ARVs accessible for all individuals regardless of immigration status.

Justice: Law and Protest

A prominent event of the last weeks is Canada’s Supreme Court ruling, clarifying what counts as criminal when failing to disclose one’s positive HIV status to a sexual partner.  AIDS MAP has written original content summarizing the ruling, which refined the risk of transmission criteria (based on viral load and use of condoms) to determine whether individuals are legally bound to disclose their status.  Divided POZ readers comment here. Canadian HIV/AIDS legal advocates have been highly critical of the ruling, linked to from AIDS MAP.  The ruling was tested in early November when Steven Boone was tried and convicted of attempted murder and aggravated assault on multiple counts, including for having unprotected sex without disclosing his positive HIV status. This ruling has also been heavily criticized by HIV/AIDS activists, who argue that a penalizing environment will foment fear and stigma.

Patents are another hot issue at the moment.  Slowly making its way around the blogosphere is the “quiet shift” (description overwhelmingly applied) in Indonesia’s stance on pharmaceutical patent law. Signed by presidential decree in September, President Susilo Bambang Yudhoyono is allowing the government to license HIV drug patents, taking the production of medications out of the control of prominent pharmaceutical companies. The move is intended to promote generic competition and ultimately lower drug prices.  The Body, Insite, KFF, and AIDS MAP linked to the news, citing this Reuter’s article. POZ reported on the story as well, citing the Centers for Disease Control.  The U.S.-based NGO, Public Citizen, has been a vocal proponent of the event, and linked to from other websites.  Patents also feature in a Plus News story (picked up by Insite and KFF) that points out the consequences of South Africa’s relaxed patent office, which increases costs by allowing for renewals of intellectual property restrictions on old drugs.

As for protests, KFF reports that Zimbabweans are protesting corruption-related improper use of the national tax levied for HIV/AIDS programming.  Recall that just a few months ago, UNAIDS celebrated the domestic tax as emblematic of countries taking ‘ownership’ of their HIV funding, and in February 2012, Plus News ran a story that also highlighted the benefits of these resources for HIV/AIDS programming. No follow-up comment can yet be found on either of these sites.

Counting Exercises: Targets and Funding

The Global Fund continues to receive significant coverage, its funding profoundly shaping HIV/AIDS care and treatment worldwide.  After coming to a halt last year, the reinstatement of the Fund in 2012 invigorated “a management focus on impact” (taken up in the last Broadsheet).  As a result, there is close monitoring of countries’ uses of Global Fund resources and their ability to achieve outcome objectives. In the last six weeks, an audit of Namibia’s use of funds was released, which found positive outcomes as well as $2.23 million that went unaccounted for and which the Fund seeks to recover.  The audit was picked up by All Africa, reporting that Namibia was  ‘whipped’ by the Global Fund, language that does not correspond to the audit’s descriptions, which are largely congratulatory. Moreover, the audit comes on the heels of Hillary Clinton praising Namibia for its progress with HIV/AIDS. These disconnects raise questions as to the way donor decision-making is formulated and commented upon by the variety of constituencies who engage in discourse-making.

Myanmar, whose funds were previously cut, is now being publicly encouraged by the Fund to re-apply (posted on KFF from IRIN, and the Global Fund).

Ethiopia’s funding was recently cut by PEPFAR and its Global Fund resources have been undisbursed, reported by KFF based on this concerned posting from the Global Health Policy blog.

Synergies

In the area of lateral moves between HIV/AIDS and other diseases and health-related concerns, Plus News reports limited cervical cancer screening in Kenya, based on a recently published WHO report. Links between HIV and other determining insecurities, such as food scarcity, continue to be studied and documented, picked up by KFF.

Biomedical Topics: Vaccines

Vaccine prospects are taking center stage at the moment, spawned by recent journal publications, and vaccine conferences in Seattle and Boston. Receiving the most attention is the CAPRISA project in South Africa, which published in Nature Medicine what is considered to be a major discovery about the way immune systems can neutralize HIV.  The article has been widely cited, including by  Plus News ,the WSJ, the NYT, POZ, linking to a press release from the University of Witswatersrand (home of a lead researcher) and e-Health also featured a story about it.  Columbia University, another institutional base, also posted material.

Another study called RV144 has also shown promising immune system findings, picked up by KFF (see Bloomberg on vaccine possibilities). The Seattle conference, organized by the Gates Foundation, presented these and related findings.

Immune science research will be given a boost by AHF’s establishment of the Institute for Immunotherapeutic Research, to be headed by a clinician and researcher Otto Yang of UCLA.  The press release states that turning to immune-based sciences is the result of “the few remaining strides” with ARVs; now, big breakthrough will come about through gene therapy and vaccine research. A Canadian vaccine research bioventure has also made news from similar study objectives.

Conversations and Frictions

Online discussions have recently coalesced on the blog, ‘Science Speaks’, aiming to gather commentary from HIV/AIDS advocates about the State Department’s HIV/AIDS ‘Blueprint’ announcement by Hillary Clinton at the 2012 AIDS Conference.  The Global Fund and Hufffington Post have also teamed up and launched the “The Big Push,” aimed to keep attention on the Global Fund’s financing imperatives despite the economic downtown.  POZ has connected to the latter campaign.

Over the past six months of writing this Broadsheet, I have noticed that particular stories clearly grow legs; they gain traction by circulating, then posted online, and then reposted.  However, despite their circulation, they seem to attract very little substantive commentary.  Aside from a few areas of more overt commentary (AHF’s takedown of Gilead, protests to End AIDS at the AIDS Conference, comments made by POZ and The Body readership), AIDS activism of the past feels far from the current constellation of concerns, articulated through on-line media.

That said, two letters were recently released on-line that may expose some of the tensions simmering just below the surface of global donor programming.  One critical letter (featured on KFF) was penned by members of twelve prominent health organizations to Global AIDS Coordinator, Eric Goosby, pointing out the blindspot of PEPFAR in adequately addressing HIV/AIDS among vulnerable populations (men who have sex with men, people who inject drugs, sex workers, and transgendered persons).  They urge taking committed action in line with Hillary Clinton’s AIDS Conference remarks to address the HIV needs of ‘highest risk groups.’  The letter belies disappointments with marginalizing policies within and outside of the HIV/AIDS arena (e.g., the criminalized treatment of sex workers), and seeks changes in future funding structures.  Another recently posted letter, this time on the AHF website, was written by advocates critiquing the Global Fund’s policy and management decisions, which may be so technocratic that it undermines its country-based effectiveness.  AHF shared the letter in a press release stating that the Fund’s General Manager welcomed the input, though neither the letter, nor the open reactions, can be found on the Global Fund website to date.

Searching for differing opinions or sites of potential conflict is an emerging objective in the Broadsheet.  What is at stake, and for whom, in this on-line circulating media world?  One immediate issue to watch is that of global malaria funding.  As reported by KFF, Plus News and others, the Global Fund and other programmatic support may have inadvertently led to a rise in inappropriate treatment. This, coupled with recent failures in malaria vaccine trials and news of wide swaths of the world experiencing drug resistance, frames what might become an uncomfortable but pressing conversation about the consequences (intended and unintended) of funding. This is a tricky conversation to have in a climate of economic austerity, where funders might want nothing more than to justify pulling back their resources. How such positions interact and become entangled will be one of many issues to watch unfold in the coming weeks.

Broadsheet News Tracking Method: After a preliminary Google Alerts search using “HIV/AIDS” and “global health” as key terms, I look up stories that appear to be getting on-line attention, especially focusing on 12 organization websites: UNAIDS, IRIN Plus News (Plus News), Kaiser Family Foundation (KFF), University of California San Francisco HIV Insite (Insite), NAM AIDS MAP (AIDS MAP), Health-e, The Body, POZ, Global Fund, International HIV/AIDS Alliance (Alliance), Bill and Melinda Gates Foundation (Gates’ blog); and AIDS Healthcare Foundation (AHF). I then look over additional news covered on these websites, tracking sources used.

For the 2nd International Conference for the Social Sciences and Humanities in HIV we invite papers that address the theme of ‘KNOWING PRACTICES’. This dual concept poses questions about the multiple practices that comprise the dynamics of the epidemic and how the practice of knowing itself, is engaged and operationalised. ‘KNOWING PRACTICES’ refers to:

1. The practices that produce, reproduce and transform the social worlds in which people live. This includes what knowledge we have of the forces shaping the epidemic – whether social, structural, geographic, historical, political or economic – and their connection to practice; and
2. The different ways of ‘doing science’ or knowing (and unknowing), that is, on the ways in which we as scientists claim to have evidence.

We hope this theme will be sufficiently broad and, at the same time, nuanced in reference to the work of the social sciences and humanities to elicit papers on a variety of topics. Within the theme of ‘KNOWING PRACTICES’, we ask what sorts of knowing and un-knowing practices are assembled and enacted as ‘authentic’, ‘valid’, ‘verifiable’? What role is there for the social sciences and humanities in the increasingly biomedical vision of the future by science and its funders? Indeed, in what ways does the promise articulated at AIDS 2012 – that biomedicine will eradicate HIV and end the epidemic – put in place strategies that simultaneously evade the complexity of the everyday nature of living and working with HIV? How can the social sciences and humanities produce knowledge that has an impact on the many forces that shape the epidemic?

While papers that address the conference’s theme ‘KNOWING PRACTICES’ are especially relevant, papers contributing to the advance of rigorous social scientific and humanities approaches to HIV and take other perspectives on the social sciences and humanities are also encouraged.

Conference Papers/ Full Sessions/ Round Table Discussions
We encourage papers/discussions at all levels of analysis and from paradigms and perspectives that address the following:

• The biomedical claims of ‘turning the tide’ to end the epidemic
• Novel knowing practices within science, social science and/or communities
• Relationships among biomedical knowledge, social-scientific knowledge, local knowledge and community know-how
• How social and humanities knowledge, perhaps together with biomedical knowledge, can be used to develop more effective responses to the epidemic
• The performative work of knowing practices (for example in the use of racial, ethnic and gender categories) as they also involve not-knowing (for instance, not knowing socio-economic difference through gender classification etc.)
• Issues of collaborating with different knowing practices
• The knowledge we have of the different forces shaping the epidemic and how we conceive their connection to practice
• What we know of global disparities in socioeconomic and/or other resources, and how well this knowledge is actioned in responses to the epidemic
• The ways in which notions of ‘the local’ and ‘the global’ inform each other and the implications of this for funding, policy and programming
• If knowledge is not neutral and but generative in ways that enact and affect different interests, how knowing practices give shape to the local and global dynamics
• The ways in which particular agencies or groups bring about changes in social, economic and political forces that shape the epidemic and/or responses to it
• What we know about risk and care practices in different contexts and how we can ensure our methods of knowing are appropriate to local needs

Submission of Abstracts and Session Proposals
Individual abstracts and proposals submitted for full sessions or round table discussions should emphasize how they will make original and timely contributions to any of the themes listed above or how they demonstrate the contribution of the social sciences or humanities to any aspect of the HIV epidemic. Submissions are a maximum of 1500 characters. Spaces count as a character.

Abstracts for individual papers (electronic submission of individual oral papers)
Each abstract (maximum of 1500 characters) should include: title; the main arguments; methodology where appropriate; and contribution to the HIV and AIDS field. The title of the abstract should be followed by the author’s name or (where a collaboration) a list of authors’ names each with their institutional affiliation or status (e.g. independent scholar) and full contact details (postal and electronic). Please list five key words to assist the programme chairs to group individual papers into sessions. All presentations will be allowed 20 minutes, and each session will include time for discussion.

Abstracts for full sessions (email proposal plus electronic submission of individual abstracts)
If you wish to submit a full session, please send an email to programme@asshh.org that includes:

1. Title for session;
2. Brief abstract of the purpose of the session (up to 1500 characters)
3. Name of organiser; and
4. Name, title and abstract of each paper.

Each abstract to be included in a ‘full session’ should be submitted as an individual abstract as above and should be a maximum of 1500 characters. It is necessary for the organiser/s of the ‘full session’ and each presenter in the session to register individually.

Session proposals should be organized around one and-half-hour time slots. A typical session will contain three or four papers of not more than twenty minutes each, with a discussant/respondent and time for open discussion. The programme chairs may assign additional papers to proposed sessions with only three or fewer papers.

Abstracts for round-table discussions: (electronic submission of single abstract)
In addition to the abstract driven sessions, we are keen to hold round-table discussions on current themes being debated across the HIV research and policy fields or emerging through community action. If you are interested in organizing a round-table discussion/forum please submit an abstract of maximum of 1500 characters indicating the topic, names of participants and their likely contribution. If selected, the conference organisers will contact you with a request for further details, including the names of speakers for the forum. Time allowed is a maximum of ninety minutes.

HOW to SUBMIT
Submission for abstracts will be available on ASSHH conference website www.asshhconference.org between 1 November 2012 and 1 February 2013. Contact details of the programme organising committee and conference administration are available at www.asshhconference.org

Queries
Programme: programme@asshh.org (relevant queries will be submitted to specific Chair)
Registrations: registrations@asshh.org
Scholarships: scholarships@asshh.org
General: info@asshh.org
Visas: mkapfer@msh-paris.fr