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HIV, Science, and the Social

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

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 20th 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


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

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