Hepatitis C Enacted

An Essay on the Expert/Lay Knowledge Divide

Arjen van der Heide March 2014

Introduction The problem of tackling epidemics of infectious diseases are enormous challenges due the overwhelming multiplicity of actors involved, a wide variety of scientific disciplines concerned with the disease and the challenging questions of distribution of treatment. What is often made very clearly in the effective epidemiological treatment of infectious disease is the important role that laypersons play in effectively accommodating the disease in the collective. The cases of these infectious diseases make strong arguments for redefining the role laypersons have in the production of knowledge, thereby looking past expertise as the sole source of knowledge. According to the World Health Organization, Hepatitis C is a liver disease caused by the hepatitis C virus (HCV), causing problems worldwide. About 150 million people are infected by the virus, from which about 350.000 people die each year due to causes related to the HCV. The main mode of transportation of the virus is through the use of contaminated injections. HCV is often related to HIV, due to certain similarities and high rates of comorbidities. As with many other infectious diseases, controversies on the ways in which HCV should be addressed have proliferated. In an op-ed piece in the Washington Post, Paul Farmer, founder of the activist organization Partners in Health, calls the lack of spread of treatment a failure not of science, but of delivery (Farmer 2014). This essay will explore some ways in which activist groups are involved in scientific production. The translation model of Callon et al. (2009) will be used to describe at which points in the process of scientific production activists can be granted access and how the role of laypersons and experts may not be as distinct as often is suggested. Also the ways in which scientific knowledge and social identities interfere and what kind of challenges this may pose on activists will be discussed. The Controversy Science, technology and society (STS) studies have been concerned with the proliferation of increasingly complex socio-technical controversies. These controversies unveil a complex entanglement of what appeared to be neatly separated institutions we call science, technology and society (see for example: Latour 1987). The socio-technical controversies are characterized by an interwoven proliferation of the technical as well as the social. The dynamic that this brings along poses opportunities for collective learning; it poses controversies as a mode of learning in 2

which the overflowing associations can be identified, proliferated and accumulated. This can help overcome two problems that democracy is facing. First, controversies can help overcome the gap between experts and laypersons. And secondly, controversies can help overcome the gap between ordinary citizens and their representatives. By trial and error and progressive reconfigurations of problems and identities, socio-technical controversies tend to bring about a common world that is not just habitable but also livable and living, not closed on itself, but open to new explorations and learning processes (Callon et al. 2009: 35). In most of the contemporary scientific practice, which is characterised by a movement towards seclusion, we can distinguish three successive translations. By analyzing these translations we will be able to understand the strengths and weaknesses of secluded research (2009: 48). Scientific controversies start with the appearance of what Callon calls monsters. These are phenomena that reside in an external reality; they surpass our collective understanding of the common world; they perplex us. In our quest for the progressive composition of the common world, we have to construct propositions on how to accommodate these objects into the collective (Latour 2009). The first stage in gaining knowledge then consists of the first translation translation 1 - which tries to move objects from the macrocosm into a smaller physical space: the laboratory. During this translation it is important that the objects in the laboratory are simplified objects that at the same time preserve strong ties with objects of interest outside the laboratory. During this move a complex and enigmatic reality is replaced with a simpler more manipulable reality, but which nevertheless remains representative (Callon et al. 2009: 50). Once inside the laboratory, the objects are scrutinized. The research collective will be at work recording their practical activities, manipulations. The main element in the work of research actually consists in devising and perfecting instruments for fabricating inscriptions, then in stabilizing and interpreting them (2009: 55). Objects are induced to speak up. Objections are to be made and inscriptions are interpreted. The work of the research collective is to devise facts that remain stable towards objections and thus are stabilized. The research collective thus consists of not only the researches, but all the objects and practices which also contain knowledge (2009: 55-59).

The third move is the move outwards from the laboratories, back into the macrocosm. Does what holds inside the laboratory also hold in the big world? This is the question of universalization of knowledge produced by the research collective. How can this transition from the microcosm to the macrocosm be accomplished without losing what was gained in the laboratory (2009: 65). The way in which researches interest the outside world is a question of social configuration and depends on the type of scientific practice they aim to embody (2009: 62). Activists To some it may seem a contradictio in terminis for laypersons to be involved in scientific production. However, in practice, it appears that certain modes of involvement in the composition of the scientific knowledge are valuable and might even be necessary in order to guarantee the efficacy of science. The involvement of laypersons in scientific production often consists of activism (Callon et al. 2009). Concerned citizens that are related one way or another to the controversial issue often associate themselves in concerned organizations or activist groups. These groups often act as border patrol officers that try to maintain the links between what happens in the laboratory and what is going on outside, in the big world. However, the ways in which activists are involved in controversies varies in each controversy. One of the strongest of such activist groups in the area of HCV is the National Viral Hepatitis Roundtable (NVHR), consisting of people infected by HCV, experts, politicians, a vast array of smaller activists groups, related activist groups, research centres, businesses, pharmaceutical companies and American government institutions. However, their concerns are mostly related to treatment of the HCV, and other hepatitis viruses, within the borders of the United States. On a more international scale, the most important activist organizations are UNITAID a government related institution concerned with finding ways to finance the eradication of infectious diseases in resource-scarce countries - and Partners in Health an activist organization, consisting of activists, scholars and professionals, concerned with linking the benefits of modern medical science to those who need them most. And to conclude, a vast array of Aids activist groups are involved in the HCV controversy as well, since the relations are well established and the numbers of comorbidities are quite significant.

Translation 1 In a much cited article situated in the late nineties Cohen (1999) observes that the attention given to the issue of HCV is relatively small, while numbers of patients grow enormously. Deaths caused by HCV started to exceed the mortalities caused by AIDS which received substantial more attention, and on which more resources are spent. He observes at a congress: While drug companies working on anti-HIV drugs jam the exhibit halls at AIDS gatherings, not a single company set up a stand at the hepatitis C meeting. If activists infected with hepatitis C virus, or HCV, attended the gathering, none made their presence felt. Not a single press conference was held, reflecting the low media turnout (one). Yet HCV has infected an estimated 170 million people worldwide (Cohen 1999: 26). Note that we can observe an instance here of a scientist that takes on an activist position; more attention should be directed towards the problem HCV poses on society. Thus whereas laypersons can contribute to the production of science in one of numerous ways, scientists can also attend to the concerns of activists, thereby further blurring borders between experts and laypersons. The author, a scientist residing with the experts, seems even disappointed with the apparent apathetic posture of those infected with the disease. The expert seems to recognise that an active role of lay persons is demanded in the process of progressive composition of the common world, whereas activists are valuable in the formulation of problems (Callon et al. 2009). Cohen thus prudently relates the lack of attention to HCV to an inadequate response. An interesting question is thus why diseases such as HIV/Aids succeed better in mobilizing a strong and well-resourced activist network than the HCV virus. Translation 2 As is mentioned by Callon, during the second translation, the one in which the research collective will work to manipulate certain relations in order to test these relations on their rigidity. The ways in which laypersons can contribute to this second translation vary a great deal. In the case of Aids for example the participation was quite direct, where the frontier between purity and pollution in the clinical trials was heavily discussed (Callon et al. 2009: 89). Pure research aims at eliminating as many variables that can influence the outcome of trials stripping the research collective down to an easily manipulable entity, whereas Aids activists were pushing towards a more representative research collective, including people with diverse backgrounds. 5

In the case of HCV we are now at a point where treatment has been found, which acts as a strong antagonist of the hepatitis C infection within the research collective. Standard treatment consists of interferon therapy, which draws upon specific combinations of drugs. However, such treatments reveal themselves to be very expensive, excluding a large group of beneficiaries, and efficacy varies across different social ethnic groups (NVHR 2011; UNITAID 2013). In its report, UNITAID proposes a number of interventions that might help to contribute to a more effective treatment of the treatment of HCV. One of these proposals consists of pushing for development of new diagnostic/treatment methods that are more tailored to the needs of resource -limited settings. Indeed, the scientists have designed an effective treatment for the cure of HCV for a specific research collective in the laboratory. What we can recognize here is that the move leading to seclusion has led to a proposed response to the issue that appears not to be sustainable outside the laboratory. Costs of treatment are way too high in order to be effectively spread throughout resource-limited settings. Activists thus act to push the scientists back into their laboratories to devise a different composition, one that bears smaller costs on those in need for treatment. Translation 3 As mentioned before, during the third translation, the move out of the laboratory into the macrocosm is concerned with the question if the relations established in the seclusion of the research collective also hold in the big world. Will the relations between the objects studied in the secluded research sufficiently tackle the problems initially addressed? Diseases reveal themselves in practice in a great variety of ways, which ultimately somehow hang together. As with many other diseases, the multiplicity in which Hepatitis C is enacted in practice makes it hard to grasp. Although for an expert researcher in his scientific lab the disease might be one and the same, due to repeated experiments in his lab, in a different space the disease might be enacted in a completely different reality (Mol 2002). Hepatitis C in the reality of a person living in a well-endowed environment is something different than Hepatitis C in the reality of someone living in a resource-scarce environment. Access to treatment, different social facilities and a different public understand make up some of these differences for example. Such a view of the disease suggests that a difference between Hepatitis C and other infectious diseases might not be as distinct as one might think. Consider the ways in which Hepatitis C 6

manifests itself in two very distinct places. Imagine person A, who finds himself situated in a well-endowed situation. Due to excellent health policy of his government, excellent hospitals, equipped with state of the art instruments and medical expertise are available to him on a short term. The way, in which his version of HCV is enacted in reality is likely to consist of some hospital visits, some blood sampling, maybe a handful of other tests and finally he gets a medical treatment consisting of a 12 weak therapy, which may or may not cause some side-effects limiting this person in his daily practice, but after which the HCV virus likely has disappeared. Now imagine person B, who is situated in a far less well-endowed situation. This person has limited access to a hospital that has mediocre second- or even third or fourth handed equipment and personnel with mediocre knowledge about HCV. If this person is granted access to diagnostics, it might take a while before it is discovered that he has HCV, when it is discovered at all; if he receives any treatment at all, they likely consist of inferior treating methods that may even cause severe side-effects inhibiting this person from his normal course of events. The way in which HCV is enacted in person Bs reality is likely to be very different than for person A. The ways in which two different diseases for example HIV and HCV - are enacted can actually appear to be more similar than the ways in which the same disease is enacted across two different spaces. And here we can find a great opportunity for activists in contributing to the composition of our collective world. Whereas researchers in the lab, that are highly specialized in one disease or another, and for whom the two diseases appear to be something different (HCV affects the liver, whereas HIV attacks the immune system), may miss the point that with different enactments, different links can establish, activists can strongly contribute in proliferating knowledge about similarities and associations to be made between what appear to be two different diseases. Interfering Identities Over the course of the composition of the successive translations something really interesting has happened. With the construction of new knowledge and its carriers - the treatments, new identities have shaped and new objects are suddenly enacted into reality (Law and Urry 2004). With the introduction of new knowledge enabling for some new courses of action, reality is multiplied. New practices that have been institutionalized interfere with the identity of HCV and the other way around (Mol 2002). In an advocacy brief written by the NVHR, it is mentioned 7

that the chance of African Americans and Hispanics of having HCV is significantly higher, compared to non-Hispanic whites. Around two-thirds of the people affected by HCV are babyboomers and in the United States, HCV-related deaths increased by 123 percent from 1995 to 2004, with the highest number of deaths in middle-aged men, non-Hispanic blacks and American Indians (NVHR 2013). These numbers enact a reality in which HCV is not merely a viral that threatens livers, but which also discriminates between ethnic backgrounds. HCV suddenly became an object which is linked to social controversies revolving around the question of ethnic inequality. It is even said that [t]hese populations are [] less likely to respond to interferon therapy the current standard of HCV treatment compared to non-Hispanic whites (NVHR 2013). HCV could not have been reenacted in a more obvious way to point out to ethnic differences, thereby reshaping the identities of these ethnic groups at the same time. Indeed, the identity of an African American infected by HCV is now related to a certain likelihood of recovery, which is deemed to be smaller than that of a white, non-Hispanic infected with HCV (Mol 2002). Whereas some researchers would say that the problem that the sciences were entangled with is solved, it appears to put forward a new selection of problems. The treatment that was devised inside the laboratory has proliferated new issues, linked up with already existing controversies, or generating new controversies. With the reshaping of identities and the proliferation of new content of the issues, new publics are sparked into being as well (Marres 2005). This may confront activists with challenges of aligning themselves in new associations - linking up with other concerned parties that have mutual interests - that are strong enough to advocate the existence of these new objects (Latour 2009; Callon et al. 2009). Conclusion In the first translation, a lack of activist involvement in the controversy was related to the inefficacy of the response. While HIV has received enormous attentions, HCV was characterized by a lack of it. In the second translation we have seen activists actively advocate a return of the scientists back in the laboratory in order to devise a treatment that is more suited for the needs outside the laboratory. During the third translation we have seen that the different shapes in which diseases are enacted sometimes bear stronger ties with objects that at first seem less related. Activists can play an important role by pointing out these connections and proposing 8

subsequent courses of action. Finally, we have observed some ways in which the enactment of HCV reshapes identities; reality is multiplied. Reshaped identities and a multiplied reality may confront activist groups with tough challenges, of finding their way in a web of interlinked controversies, of reshaping new alliances and proposing new objects for controversy. The ways in which activists are challenged by such multiplication of reality and refashioning of identities can be an interesting topic for further study.

Literature Callon, M. (2009). Acting in an uncertain world. MIT press. Cohen, J. (1999). The scientific challenge of hepatitis C. Science, 285(5424), 26-30. Farmer, P. The global AIDS response can help in fighting hepatitis C. New York Times, 13 feb 2014. Accessed online: 29-03-14. Latour, B. (1987). Science in action: How to follow scientists and engineers through society. Harvard university press. Latour, B. (2009). Politics of nature. Harvard University Press. Law, J., & Urry, J. (2004). Enacting the social. Economy and society, 33(3), 390-410. Marres, N. (2005). Issues spark a public into being: A key but often forgotten point of the Lippmann-Dewey debate. Making things public: Atmospheres of democracy, 208-217. Mol, A. (2002). The body multiple: Ontology in medical practice. Duke University Press. NVHR. (2011). Closing the Gap in Hepatitis C: Prevention, Screening and Care. Accessed online: 29-03-2014. UNITAID. (2013). Hepatitis C Medicines and Diagnostics in the Context of HIV/HCV CoInfection: A Scoping Report. Accessed online: 29-03-2014.