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How to Have Social Media in an Invisible Pandemic¹

Hepatitis C in the Time of H1N1

Lisa Cartwright

Time, Visibility, and the Social Media Pandemic

In June of 2009 the World Health Organization (WHO) announced that the first influenza pandemic of the twenty-first century, and the first since 1968, was underway (Chan, 2009). Director-General Margaret Chan expressed concern that the H1N1 outbreak, placed at the highest level on the agency's risk scale, would follow the pattern of prior flu pandemics and would be with us for months if not years to come (Lynn, 2009). For the leading world health agency to officially sound the pandemic risk alarm at the highest level was no small matter. A million deaths were attributed to the Hong Kong flu by the end of the 1968 pandemic (Paul, 2008), and 50 to a 100 times that were attributed to the Spanish flu of 1918–1919 (Barry, 2004). But Chan expressed optimism about the role that global disease surveillance and communication systems might play in staving off the worst: “No previous pandemic has been detected so early or watched so closely, in real-time, right at the very beginning,” she noted. “The world can now reap the benefits of investments, over the last five years, in pandemic preparedness” (Chan, 2009).

Public health messages proliferated in the months following the WHO H1N1 announcement as agencies such as the United States Centers for Disease Control and Prevention (CDC) tweeted and texted updates, uploaded public service announcement videos to YouTube, collaborated with their corporate “partners,” and “listened” to constituents, now called consumers, via Facebook and Twitter. CDC had been using a MySpace account since 2007 to direct its public to consumer health information at its site; the agency had launched its own Facebook profile in 2009 when public traffic overloaded its server. Signifiers of enlistment – H1N1 buttons, badges, content syndication, widgets – were offered on special social media pages along with information about where one could go to find public service announcements (PSAs), report news, and engage in online dialogue.² YouTube accounts with algorithms computing global demographic data collection made it possible for agency marketing experts to track hits. These data were useful not only to marketing but also in light of disease surveillance. It was obvious that we had moved past the days of using the pamphlet, the billboard, and the television PSA as primary means of health communication in many parts of the world. This was known because social media analysts, using infodemiological and infoveillance social media tools tied to the very technologies of public outreach, had accrued hard evidence of the massive involvement of a vast global public in myriad H1N1 social media campaigns.³

A host of ironies emerge when we look back on the viral social mediation of the H1N1 pandemic. Foremost among them is the fact that while H1N1 may have been the first flu pandemic of the century, it was hardly the first pandemic. Two pandemics in particular – HIV and HCV (the hepatitis C virus) – had already bridged the millennia with their severity and virulence quietly intact. Using language that emphasizes the urgency of addressing emergent diseases in time to stave off future pandemics, the WHO pandemic page features flu among its examples, leaving out pandemics caused by other viral and bacterial agents, such as HIV and HCV. Unlike H1N1, these pandemics have been marked by extraordinary mortality and morbidity, as well as by longevity. In effect, these events fall to the margins of the concept of “pandemic,” with its relatively new emphasis on urgency, emergence, and futurity. HIV and HCV have not been the star subjects of the new social media public health campaigns. Instead, they are part of a set of pandemics that constitute by default the slow, pervasive, invisible, and dangerously normalized underside of the pandemic concept.

The H1N1 flu pandemic was extremely well mediated. It is, arguably, a prime example of successful pandemic response and eradication. Paradoxically, the messages of its media campaign were consistently weak. Social media platforms were used heavily during the crisis, and it has been reported that individuals tended to post reliable information (Chew & Eysenbach, 2010). But one of the curious characteristics of the exchanges posted is that it was widely agreed that there was not much to know, other than that one should watch and wait for new information and guidelines. A major task facing health communicators at the beginning of the social media campaign was semiotic: the virus needed to be rebranded away from the stigmatizing monikers “swine flu” (under which global pork sales suffered) and “Mexican flu” (Bradsher, 2009; Rushe, 2009). Recommendations about who should be vaccinated changed from week to week and varied from country to country. Aside from shifting vaccination guidelines, the dominant global public health message that emerged was the familiar admonishment to wash one's hands often and well.⁴ Rising above ever-changing guidelines and the checkerboard of approaches emerging across the various national and global health agencies was the refrain “we just don't know.”

As H1N1 failed to generate the extent of morbidity and mortality anticipated, the question was broached among health professionals, members of the press, and the public about whether this outbreak should have been classified a pandemic of the highest order at all. In numbers of deaths and severity of illness, H1N1 had begun to look more like a seasonal flu. Questions about classification were vexed by the fact that the WHO's online description of a pandemic had recently been changed. Between 2003 and early May of 2009, the WHO Pandemic Preparedness home page stated: “An influenza pandemic occurs when a new influenza virus appears against which the human population has no immunity, resulting in several simultaneous epidemics worldwide with enormous numbers of deaths and illness” (WHO, 2003). In early May of 2009, as H1N1 was ranked a phase 5 risk, Elizabeth Cohen, a CNN senior medical correspondent, drew attention to an anachronistic perception that plagued this description. Global flu outbreaks designated as pandemics no longer necessarily engender the large numbers of severe cases of illness and deaths that one might expect from a concept linked historically to outbreaks with actual extreme virulence, Cohen observed, leading her to ask, when is a pandemic not a pandemic? (Cohen, 2009).⁵ Shortly after Cohen's article was published, the WHO changed its online description of the term pandemic, omitting the words “with enormous numbers of deaths and illness” while leaving in the factors of geographic distribution of outbreaks and low immunity to novel strains. This modified definition meant that the WHO would no longer need to wait for a disease outbreak to reach a morbidity threshold that qualified as “enormous” before publicly designating it a full pandemic. Shortly after this change was posted, the H1N1 pandemic was declared at phase 6, suggesting to many unaware of the changed description a situation of urgent virulence in which morbidity was already extreme and large-scale mortality was imminently possible.

In effect, the modified description of a pandemic released the WHO of the burden of waiting for a pandemic to be actual and visible before sounding the highest alarm. The concept of pandemic was free to serve semantically as a means of generating anticipatory anxiety, what Penelope Ironstone-Catterall, describing rhetorical constructions of risk in disaster movies, calls “anxious pandemic futurity” (Ironstone-Catterall, 2010, p. 92). In a shift that parallels the move to the strategy of using treatment as prevention, pandemic announcement is adopted as a rhetorical means of pandemic prevention. A pandemic state announced generates a state of agential watchfulness – agential in the sense that watchfulness is preventive. Disease begins to sound remarkably like weather: we watch and wait for the signs of a new storm's accumulation of strength and follow its geographic course, tracking preliminary events to predict who is at risk and to prepare for what may happen to populations in a range of possible places that may be hit hardest. Indeed, the Pandemic Severity Index (PSI) introduced by the US Department of Health and Human Services in 2007 was modeled after a system designed to predict weather, the Saffir-Simpson Hurricane classification system introduced in 1971, which was in turn based on the Richter scale used to measure earthquakes.

Questions by health professionals and journalists about the call to designate the global outbreak a pandemic were fueled by reports that some members of the WHO's H1N1 medical advisory committee had declarable financial ties to pharmaceutical companies that had precontracted with governments to produce the vaccine quickly in the event of need (Cohen & Carter, 2010; Sturcke & Bowcott, 2010). Within a year of the WHO H1N1 pandemic announcement, Fiona Godlee, editor in chief of the respected British medical journal BMJ, proposed that although we should be thankful the pandemic turned out to be a “damp squib,” the WHO should be held accountable for triggering a global response that spurred governments to activate vaccine contracts right away on a massive scale (Godlee, 2010). The scope of the problem with anticipatory announcement was driven home in Britain when, even before the last shipments of the British health service's order had been delivered, the government had already begun strategizing about what to do with an anticipated surplus of up to 20 million doses (Sturcke & Bowcott, 2010).

Thus for some, the H1N1 case represents a disaster averted thanks to smart investments in medical surveillance and participatory media, while for others it was an alarm sounded at the wrong level with mixed motives (to enlist the public in prevention through announcement; to generate financial gain). Either way, the H1N1 event draws attention to the major implications of seemingly small changes in defining what constitutes a pandemic in a climate of anticipatory surveillance medicine and emergency communication.

In the pages that follow, I discuss the temporality of the pandemic concept and H1N1's lightning-fast mediation, its modeling of pandemic announcement as prevention, as a newly marketized approach to public health communication. I use this case as a basis for grasping the relative quiet surrounding HCV, a virus linked to a pandemic that precedes and outlives the H1N1 outbreak. I conclude with a discussion of the HCV pandemic itself, suggesting that the virus has been plagued with the conditions of silence and invisibility linked to its slow chronicity⁶ at every level, from the 30 years prior to its discovery (during which time it was named for the types of hepatitis it was not: NANBH, for non-A, non-B), to its current figuration as a chimeric “cloud of quasi-species,” to the 2 to 30 or so years of its relatively symptomless progression in the body, to its stunning absence as anything other than a paradoxically timeless and elusive stalled cloud of a pandemic in public health social media. By situating HCV in its slowness and invisibility against H1N1's whirlwind history, I aim to make a convincing case that we need to slow down and rethink how we mediate pandemics through social media, and how we regard time and visuality in the contemporary notion of the pandemic. In 1998, physicians and researchers asked the question: “can science meet the challenges of the HCV pandemic?” (Roehr, 1998). I adapt this important question about science, a question that was urgent then and is urgent now but to which we can only answer, sadly, we don't know, to the media context, and to the language of strategies and tactics, shifting the emphasis away from knowledge and ability: How have social media experts met the challenge of the HCV pandemic, and how might we address it differently, within the terms of its unique chronicity? At the root of this challenge, I believe, is our ability to grasp and mitigate the emergence of emergency and futurity as dominant paradigms in public health communication about pandemics. Below I do not argue that we need to render HCV more visible or bring it into the temporal framework of emergency communication and the current tactics used in the social mediation of flu pandemics. Rather, I propose that we need to be aware of what gets missed in the language of emergence (of emergent viruses, emergency health communication) and in the anticipatory surveillance medicine that drives our media strategies for managing pandemics into future time, producing tactics that work through a paradoxically banal panic logic of announcement as prevention. The anticipatory time of H1N1, I will be proposing, has dangerously elided recognition of a pandemic, one that is virulent and severe now. HCV is missed because it lives in slow time. It appears and rushes ahead in the body only when it is too late to address it as effectively as we may in earlier, less visible stages of the disease. We need a media model that will capture HCV in its unique chronicity, and that will render the virus in its own passively pessimistic terms of diminished visibility and constitutive absence, to fully grasp and address this vast banal pandemic before it becomes too late to make a difference in outcomes.

H1N1: Social Mediation in Anticipatory Time

“No previous pandemic has been detected so early or watched so closely, in real-time,” Chan explained of H1N1. Watching closely as a means of managing a flu pandemic, not just in real time but even before the pandemic appears with the severity associated with flu pandemics of the past, is a strategy that had been in the making for some time. David Armstrong introduced the concept of surveillance medicine in 1995 to describe the epidemiological technologies developed throughout the twentieth century that remapped the domains of illness to include spaces beyond the pathological body, the research lab, and the hospital. Healthy populations and the intersecting zones of everyday life were drawn into the realm of a medical gaze that entailed the implementation of new instruments of disease surveillance and communication. These tools extended the range and scale of detailed public health inspection, intervention, and promotion from the individual and interior and microscopic views, to include vast populations and disparate geographic regions (Armstrong, 1995). The classically panoptic medical gaze was disseminated and routinized in the last decades of the twentieth century by the introduction of digital imaging and wireless communication systems, which were integral to the advancement of notions of agency and choice in the implementation of new technologies of the self (Foucault, 1988). With the institution of digital medical surveillance and communication systems, publics, at the level of the individual, could be enlisted in the task of global surveillance for communicable and infectious chronic and emerging diseases (Burchell, 1993; Couldry, 2010; Rose, 1993), enacting global health schemes at the scale and through the efforts of the individual consumer as agent in self-health (Lupton, 1995; Porter, 2005; Rose, 2007). Consumer and professional technologies intersected as self-health became a key component of this expansion of the culture of surveillance into the routine practices of the individual, including the adoption of devices for self-monitoring, home testing, and online self-diagnosis and self-treatment. Individuals were enlisted as their own public health agents during the choice-driven climate of managed-care medicine in the neoliberal era.⁷

In the media studies context, it is helpful to think of the notion of an epidemiological remapping of health and disease in light of the satellite footprint, a concept introduced by Lisa Parks (2005) to understand the pervasive yet invisible presence of satellites. These instruments pervasively yet invisibly orbit around the planet, paradoxically mapping us from outside our range of vision, even as they facilitate our individual and constant engagement with the images they generate, engaging us in the paradoxical condition of disembodied emplacement. The visual paradigm of public health social media, from global epidemiology to everyday health consumer communication practices, is similarly structured around a paradox of the increased visibility and transparency of disease, not only as visible fact but also as potential. We recognize and identify ourselves as subjects of health in terms of the risks posed by our emplacement in an epidemiological field where we may not be actually sick, but we live in the anticipatory condition of potentially becoming so. The visibility of disease risk is coupled with a lack of transparency and visibility of the benignly pervasive technologies that paradoxically facilitate a public gaze that is anticipatory and prophylactic, even as we do not see or note these technologies of emplacement in disease potential. Looking becomes a benign form of waiting for something we dread and hope to prevent, something we have never actually seen and can barely visualize, through the very act of watching nothing happen. This is the basic principle of surveillant visuality: most of what is recorded on surveillance tape shows nothing; the system functions on the principle of hope that watching intently (recording data) will produce more of the same nothing – will not simply catch an event when it does happen, but will deter and prevent that anticipated event. Surveillance is anticipation as prevention. We use algorithms to compute and predict outcomes we cannot yet see, and we share these projections even when there is nothing yet to see. The principle of the precession of the simulacra emerges, in surveillant specularity, as a means of prevention of the dreaded Real.

This concept of an investment in technologies of watching linked to technologies of computational projection and public messaging took on greater urgency after 9/11. Anthrax posted through the US mail system shook public and professional confidence in national defense, revitalizing the notion that with the increased distribution of goods and services in modernity also comes the potential for the distribution of bodily dangers and risks requiring detection, management, and protection (Beck, 1986). The task of securing public health became more closely linked to technologies of national security with this novel convergence: what was weaponized was not just a biochemical substance but also the mail.⁸ Messaging as biological warfare was a relatively new phenomenon. “Investments in preparedness” was a phrase widely used in the 2000s to describe efforts among national and global health agencies to upgrade disease surveillance, bolster health communication, and detect pandemics-in-the-making.⁹ The phrase drew on the logic of surveillance that escalated in the twentieth century. It also built on the “digital turn” with its engagement of publics, at the level of the individual, as agents in emergency health management. Managing communication and transmission channels became an integral matter of managing the circulation of physical infectious agents and not just information. The WHO launch of the Alert and Response Operations system in 1997 to identify outbreaks (renamed Global Alert and Response, or GAR) coincided with the implementation of digital technologies ranging from networked global surveillance and communications systems at the macro level to media communications aimed at individual website users. World health monitoring, predictive modeling, and multi-directional networked communication with the public at the individual level emerged as joint objectives for agency health communication systems.

In fact, H1N1 was the first pandemic for which public health agencies brought social media networks and strategies into play in large-scale campaigns at both these levels with such force. Social media venues were enlisted by health agencies to track and disseminate information about H1N1 and to build public trust nationally and globally through dialogic exchange between agencies and with and among constituents, simultaneously dubbed consumers (in keeping with the new market model) and users (in keeping with the language of new media). Historian Debra Blakely proposes that in the flu pandemics of the previous century, pamphlets, news media, and public service announcements did not simply educate and report but also influenced the nature and course of epidemics (Blakely, 2006). In the 2009 flu pandemic, the dynamics of health communication changed by enlisting the public, through social media, as individual agents in the process of producing news and educating networks of communities.¹⁰

During the post-9/11 anthrax event – dubbed Amerithrax by the FBI – public health agency communication divisions began to shift in their organizational structures to accommodate a convergence of concerns around national risk, health communication, and markets and consumption of goods and services. The shift to online communication coincided with an event that prompted concerns about the potential to use the mail system as a means of communicating disease indexically, as it were – through a system that entailed a geographically extensive chain of physical contact. Two weeks after 9/11, anthrax spores, contained in cryptic letters embedded with DNA code in an envelope addressed as if from a suburban school child, were mailed to two senators and news media offices. Five people, including postal workers who came into contact with the mail as it passed through the sorting room, died from inhalation of anthrax, and between 17 and 63 others became ill, some with skin infections (Cymet & Kerkvliet, 2004; Sarasin, 2006; Thompson, 2003). The anthrax event raised concerns about the appropriation of basic communication and media systems to convey disease through a global system that targeted individuals.

This event was a major impetus to the institution of a new model of health communication, one that could adapt quickly enough to address emergency health situations with due urgency. Marsha Vanderford, Director of the CDC Emergency Communication Branch and Chief of the CDC Emergency Risk Communication Branch, recounts the rush of the anthrax event in CDC's health communication sector: “I don't think I had ever been through an event where so much depended upon how well we communicated. [. . .] We were in a situation where the demand for information and recommendations was tremendously high, and at the same time our knowledge about what was going on was changing all the time” (Vanderford, 2008). The CDC response to H1N1 was shaped by this precedent that foregrounded communication itself, both as a potential source of health risk and as a vital source of risk management.

At the time of the WHO declaration of the H1N1 pandemic, the CDC, the US Department of Health and Human Services (HHS), and the Food and Drug Administration (FDA) were already two months into a collaborative social media campaign to address another outbreak, this time of salmonella. As had been the case with anthrax, there was massive public demand for information about national safety, in this case of the peanut butter supply. The 2009 peanut butter salmonella outbreak was not just about public health but also about consumption – the safety of an archetypical inexpensive staple of the US diet was at stake. The FDA conducted inspections around the country that resulted in a sting operation in which federal marshals seized tainted peanuts, tracing the strain of Salmonella Typhimurium back to a Texas processing plant that was driven out of business by the publicity. The HHS, FDA, and CDC launched a collaborative social media push around the outbreak, and the CDC Social Media Center emerged out of this process (Turoczy, 2009). Peanut butter thus smoothed the way for the broad-scale, interagency use of social media in an explicitly designated social media campaign organized around health risk, national safety, and consumer protection.

Social marketing was an explicit feature of this social media campaign as well. This is the term used to describe the use of brand marketing strategies to “sell” emotional investment in cause- and rights-based initiatives and to promote behaviors (such as those linked to good hygiene) that typically escape market frameworks. The use of commercial marketing strategies to sell social good rather than commercial goods was subject to some theorizing in the early 1970s, when Philip Kotler and Gerald Zaltman, in a 1971 essay that is now a classic of cause-linked social media, revived a question posed by the mid-century US psychologist G. D. Wiebe: “why can't you sell Brotherhood like you sell soap?”¹¹ The early history of social marketing includes numerous examples of medical, public health, and social hygiene causes promoted using the tools of advertisers and marketers. In fact, this history can be traced back to the earliest charity poster campaigns and radio and television public service announcements, and also to the history of selling commercial soap as a means of selling Western personal hygiene practices to colonial subjects. Wiebe, a research psychologist for the CBS radio network, was a 1950s analyst of public opinions and attitudes who performed an interesting reversal on earlier well-known media effects research projects like the Payne Studies.¹² Rather than looking for ways that mass media forms might promote behaviors regarded as degenerate, Wiebe asked how the persuasive powers of radio and television could be redirected to promote moral attitudes and behaviors (the reduction of juvenile delinquency is one of his examples), much as these forms had been used to direct audiences to buy into a culture that venerates and reproduces certain beauty standards (the home permanent wave is his example) (Wiebe, 1951–1952, p. 680).¹³ He was an early proponent of the idea that advertising sells attitudes and sentiment, not just goods. Social-cause marketers of the 1970s were interested in spreading democratic will through an expanded capitalist framework that saw attitudes as commodity and investment capital that can be grown. This view was effectively subsumed by communication theories that were skeptical about the democratic potential of media persuasion methods, advertising, and consumption. Until the time of social media, the academic field of communication was for the most part not very optimistic about advertising's potential to “sell” progressive social change. Even in health communication the tendency until the late 1990s was to regard media as an educational tool for correcting a misinformed public, and the attitude that the appropriate role of public health communicators is to educate has persisted with the shift to a social marketing model in public health communication (Eysenbach, 2009). The explicit branding of public health communication under the sign of marketing rather than education is relatively recent. It coincides with the neoliberal turn, wherein the corporation emerges as a partner in public health, the citizen emerges as agential consumer or media user-as-producer in a health marketplace, and persuasion emerges as a benign and reciprocal fact of mediation, with the consumer messaging back and influencing the producer.

When the CDC formed its Emergency Risk Communication Branch, this entity was initially situated in the National Center for Health Marketing, which was for a time the organizational center of CDC's emergency communication response network (it was later dissolved). Marketing was thus brought explicitly into the federal public health picture in the decade after 9/11, when it was also coded in terms of security risk. This division was established as the locus of work around conditions that are understood as crises, addressing health events such as flu pandemics that unfold fast, with no time to lose.

Social Media and Reproducibility

I have proposed that the concept of pandemic, in the WHO sense, is centrally implicated in a politics of anticipatory visibility – a set of strategies that aim to make visible, and thereby avert, disease outbreaks in advance. This shifts how we understand disease relative to reproducibility, a concept that links contagion to mediation in ways that go beyond metaphor and analogy, as Kirsten Ostherr (2005), Patrick Wallis and Brigitte Nerlich (2005), and Priscilla Wald (2008) have so compellingly shown. In pandemics, cases of illness replicate not only due to the indexical action of contiguous body-to-body contact within a region, but also through the simultaneous multi-sited action of outbreaks that occur as bodies fly from continent to continent, leading to cases rhizomatically cropping up in multiple sites at once. Remote transmission, a concept familiar to media studies, becomes a concern that public health managers address, in turn, with rhetorical mediation about prevention that results in real change in modes and rates of transmission. The media dynamic in which information travels from individual to global to individual with rapidity, bypassing the slow process of official communications, as is the case with social media exchanges, becomes an integral aspect of managing the physical logic of disease transmission from individual to individual across vast spaces. Social media provides entry points for mediation that match the rhizomatic structure of flows of pathogens across distances and borders. As Stefan Helmreich has noted, it is not by mere analogy that the language of viral infection was applied in computing cultures (Helmreich, 2000).

Pandemics are more strongly characterized by the qualities of newness and speed that are typical of digital news media transmission, as in the case of a new virus against which humans have not had time to build up immunity. Noncontiguous simultaneity poses a different way of computing reproducibility than epidemic numbers within a region.¹⁴ The designation of a pandemic indicates the need for multi-sited response and mitigation efforts, which means distributable media forms must be engaged as essential components of response – a perfect fit for distributed social media. In short, the pandemic scale is designed to identify and promote mediated management of a pandemic before it fully hits, while impact is still in part an imagined future, and also to privilege anticipation and potentiality as means for the individual agent to implement control strategies understood to be globally meaningful. This is not exactly a matter of visualizing and sharing pandemic news in the television-era mode of real time, as Chan suggested, but rather of invoking an imagined future based on the historical image of (flu) pandemics of the past, which health communication specialists may forestall in collaboration with vigilant members of a social media public.

H1N1's Shadow Archive:¹⁵ (Flu) Pandemics Past

The anticipatory leaning of the pandemic media model away from disease severity and toward risk understood on a geospatial and temporal, anticipatory model carries within it a shadow archive of historical imagery and information. Agencies like the WHO and the CDC must respond with full knowledge of the public's ability to bring to life online archives of past crises that were not detected in the making and (by implication) not averted. The collective animation of past disasters due to failures in defensive watching and warning systems, as we learned in 2011 when we saw video footage of tsunami waves engulfing stranded citizens in Japan, becomes a strong motivation to implement stronger anticipatory surveillance and communication media measures.¹⁶ In the case of H1N1, it was not the HIV epidemic or pandemic that was evoked by media reminiscences but past flu epidemics and the vast morbidity and mortality they engendered. Constructing the pandemic concept with flu as its core example, the WHO inadvertently helped the specter of influenzas past to cast its shadow over the memory of HIV, the most mediated pandemic of our time.

Is HCV, in its silence and invisibility, without a history we can sense? We might ask, following Akira Mizuta Lippit (2005) in his consideration of atomic radiation and the condition of avisuality it produced, what is the archive of HCV, given its unique chronicity and in its unique historical relationship of avisuality not only in technologies of its social mediation, but also to its phenomenological life as a virus and as a pandemic? In another context, I hope to be able to show how HCV's archive is potentially a shadow archive not directly constituted by its own absence, but by the image of HIV. We might learn from the image-rich culture of HIV how to have social media in the HCV pandemic. HIV serves not just as a specter of a tragedy to avoid, but also as an archive of successful media activism, advocacy, and intervention. For the purposes of this essay, I will turn directly to HCV to ask how this pandemic has escaped the visual logic that would invite us to imagine and change the course of its increasingly threatening future.

HCV: An Invisible Pandemic in Slow Time

HCV is a notoriously silent and invisible virus, and one can say the same about its pandemic media campaign – its silence and invisibility have been profoundly lethal, and the situation escalates. It is estimated that 3% of the world's population is infected with HCV. The CDC places the estimate of people living with chronic HCV at 130 to 170 million, with 3 to 4 million new infections and more than 350,000 deaths due to HCV-related liver disease annually (CDC, 2011).¹⁷ At the time of this writing (summer 2011), there is no vaccine. The CDC describes the current treatment program as a cure;¹⁸ however, other sources have been hesitant to use this term without quotes around it, as what is known is that viral loads can be dropped to levels that tests cannot detect in the bloodstream. The intensive regimen of weekly injections of pegylated interferon and daily oral ribavirin for six months to a year may lower the viral load to undetectable levels in a percentage of people infected with the virus; however, it is not known for certain whether the virus is fully eradicated to the point where it will not resurface under conditions of severely compromised immunity, and treatment protocol time frames can vary from six months to a year based on levels of trust in the factor of detectability.¹⁹ The death rate from HCV is predicted to surpass that of AIDS (C. Everett Koop Institute, 2011). There is wide agreement that statistics are unreliable, estimates are probably low insofar as they emerge from a context of chronic underreporting and global paucity of adequate surveillance, educational outreach, and testing programs, and risk groups are poorly understood due to the stunningly wide prevalence of infection and subtypes of the virus. Former US Surgeon General C. Everett Koop captured the pervasive and widespread nature of the pandemic in branding the HCV outreach and education website that he launched: “Hepatitis C: An Epidemic for Anyone.”

In the past three decades, the concepts of “emergent diseases” and “emergent viruses” have occupied scientists and politicians intensively, as they are believed to pose a new sort of biosocial and bioeconomic threat. But the idea of what constitutes “emergence,” as I have tried to show above, is complicated by factors such as risk, prediction, and – as should become clear below – the relative perceptibility of viral agents. Agencies have been slow in implementing surveillance and communication in response to the HCV pandemic. The emphasis on the temporal and spatial dimensions of emergence has resulted in a favoring of the fast-paced novel flu as the core of pandemic character, making the very framework of the concept less well matched to disease agents and pandemics that are not characterized by the same degrees of rapidity and immediacy as new viral strains or diseases that act quickly. HCV, a virus some would describe as one of the most profound health concerns of our century along with HIV, ironically has escaped the mechanisms of anticipatory visibility that steer health communication in the direction of emergency and risk, classifications that have not been designed to see the chronic, the slow, and the virulently invisible. H1N1 was ultimately not widely visualized, despite the wealth of social media messages devoted to it, because its incidence was lower and its severity was less pronounced than anticipated. HCV's invisibility is a different matter. Invisibility is understood to be integral to the virus itself on every level, from its existence as a pandemic to its course in the body and to its status as a viral entity.

The Invisible Virus: Clones, Swarms, and Quasi-Species

The virus was “discovered” in a classic example of a precession of simulacra (Baudrillard, 1994) – a generation of models of the real that precede and make possible recognition of the real, shaping its conditions of being. In the 1970s a National Institutes of Health (NIH) research team demonstrated that most cases of hepatitis following blood transfusions were caused by neither hepatitis A nor hepatitis B. For almost three decades the suspected viral cause of liver disease in some people who had received blood transfusions went by the names NANB or NANBH, for non-A non-B hepatitis. NANB could neither be visualized nor grown in culture, nor could it be immunologically defined. Despite failure to isolate the virus through conventional methods, researchers firmly believed that a viral entity was at work in concentrations too low for identification. Its discovery was given impetus by research into HIV, also a retrovirus, the discovery of which was reported in 1983.²⁰ In 1987, a team of scientists working at the Chiron Corporation, a California multinational biotech firm, with D. W. Bradley, a CDC scientist, identified the virus indirectly, through a novel molecular cloning process that offered a clone as proof without prior characterization of the infectious agent (Choo et al., 1989, p. 361). The DNA clone was derived from a blood-borne NANB hepatitis genome derived from a subject with active NANB hepatitis. This technique of identifying a viral agent for the first time through a clone was widely regarded as a major breakthrough in viral identification methods for science. The viral particles were determined, on the basis of the clone, to be not only highly mutable but also imperceptibly small – roughly 80 nanometers in diameter. (The clone was itself verified, not directly, but in its response to an assay of antibodies from a patient with NANB hepatitis.) For six years the team had tirelessly screened hundreds of millions of bacterial DNA clones derived from infected chimpanzees, but mutation was so rapid that they could not fix and isolate a single molecule. A sole HCV clone was eventually isolated using a screening method in which antibodies derived from a clinically diagnosed NANBH patient were used to identify an experimental DNA clone. Thus HCV was first identified through a clone that served as its authentication even before the virus was rendered directly perceptible (Choo et al., 1989; Kuo et al., 1989). In effect, HCV brought scientific discovery methods into the age of the postmodern simulacra by demonstrating Baudrillard's point that the sign of the real can precede the real (Baudrillard, 1994, p. 1). To simulate is to feign to have what one does not have (demonstrable proof) and thereby produce the conditions that may bring that entity into the sphere of perceptibility. The HCV discovery entailed exactly that process.

In addition to its characterization as invisible, silent, incredibly small, slow, and hard to culture, HCV is also described as highly mobile and changeable, existing in a swarm. HCV, like HIV and influenzas, is a retrovirus. It replicates and mutates quickly, resulting in a closely related but genetically diverse and changeable group of circulating cells that rapidly evolve to resist vaccine and antiviral drugs. A trillion particles are produced in the body each day. Genetic variants are called quasi-species, and the movement of these particles in groups is referred to as a swarm. Quasi-species in the HCV swarm include drug-resistant variants that are difficult to study closely – mutations that are not readily detectable by conventional methods of sequencing. It is difficult to characterize their temporal stability (Wang, 2011). A quantity of research literature on retroviruses considers the notion of the rapidly mutating, genetically diverse quasi-species that exists in a context described as a swarm. How is one to understand an entity, a virus, when its form is by definition mutable, random, a blur of many tiny particles in changing configurations? The swarm concept draws on groups in nature: birds and insects, for instance (Parikka, 2011), but also from artificial intelligence research (Parikka, 2007, pp. 243, 237) and theorizations of empire (Hardt & Negri, 2005, pp. 91–92). Swarm is the term used to characterize the collective behavior of particles or units in a decentralized, self-organized system. The term suggests a lack of representational clarity and pattern in a cloud that overwhelms; however, as Hardt and Negri explain with regard to intelligence in warfare, the swarm concept is historically based in the theorization and management of intelligence in communication: computers can be designed to process information faster using swarm architecture; Rimbaud's beloved Communards swarmed like ants (Hardt & Negri, 2005, pp. 91–92). Though moving seemingly randomly, the swarm follows a logic that can be computed through algorithms designed to model and predict their complex dynamics. Although in microbiology “swarm” captures the lack of easy perceptibility, the cloud character of the hepatitis C virus in its multiplicity and mutability, it also explicitly suggests the anticipatory potential scientists feel toward their ability to design intelligent models and methods for the nonreductive discernment of the virus within the terms of its own complexity and temporality. Once again, the concept of anticipatory vision comes into play in a manner that encompasses both dread (the disease is terrible) and hope: swarms are decentralized but are within the terms of an intelligent communication system that can be modeled even if it cannot be seen, as the virus's novel discovery through cloning has already shown. To represent the virus is not to make a single particle visible (which has by now been done), but to grasp it in all of its mutability, temporality, and variety. It is a virus that is characterized not only by its status as a “first” for simulation as proof, but also as one of the “firsts” for the future of swarm nano-imaging. This is not just about seeing at the level of the molecular-invisible (Rose, 2007), but predictively imaging future difference and grasping multiplicity in transition.

Figure 9.1 Hybridization of clone 81 cDNA to RNA. (A) spot hybridization (24) of 2, 4, or 12μg of total liver RNA extracted (25) from either chronic NANBH-infected chimp 910 (a1 to a3) or from two control, uninfected animals (b1 to b3 and c1 to c3) with ³²P-labeled nick-translated clone 81 cDNA. (B) Spot hybridization of nucleic acid extracted from viral plasma pellets (22) before (spot 1) or after treatment with either excess deoxyribonuclease 1 (spot 2) or ribonuclease A (spot 3). Hybridization probe as in (A). (C) Each strand of clone 81 cDNA was subcloned into phage M13mp 18 and then labeled by incubating with Klenow Escherichia coli DNA polymerase 1 in the presence of hybridization probe primer (New England Biolabs) and [α-³²P]dCTP (23). Each probe was then hybridized to slot blots containing either identical portions of viral RNA derived from infectious plasma (a1 and b1) or 2 pg of purified clone 81 double-stranded cDNA (a2 and b2). (D) Northern blot analysis (26) of 30μg of total RNA (track 1), 30μg of unbound RNA (track 2), and 20μg of bound RNA (track 3) after chromatography on oligo(dT)-cellulose (Collaborative Research). RNA was derived from the liver of infectious chimpanzee 910. Arrows indicate the relative migration of 28S and 18S ribosomal RNA. ³²P-labeled nick-translated clone 81 cDNA was used as the hybridization probe. Source: Q. L. Choo et al., “Isolation of a cDNA clone derived from a blood-borne non-A, non-B viral hepatitis genome.” Science, 244(4902), 359–362. Image courtesy of the American Association for the Advancement of Science. Reprinted with permission from the American Association for the Advancement of Science.

One can also say that HCV is a virus that is not one, that is multiple, in simpler terms than the swarm of particles in which it consists. HCV is part of a series that by 2011 included six discrete viruses, with the hepatitis alphabet running from A to G (F was named only to be declassified later). Hepatitis C alone is subclassified into 11 genotypes, each of which has one to four subtypes.

It is partly for this reason – the multiplicity of the viral particles as swarm, of the virus as part of a series, and of the individual virus as a set of subtypes – that one often encounters the phrase “not well understood” in conjunction with discussions of the virus, even apart from its status as a disease over time and as a pandemic.

HCV's Slow Course: The Imperceptible Bodily Progression of the Disease

HCV is slow in its progression from chronic infection to active disease, hence its popular branding as a “silent” or “invisible” epidemic.²¹ Infection is blood to blood; routes of infection are neither well studied nor well understood apart from obvious sources such as needle sharing and transfusions. Seventy-five to eighty-five percent of people infected develop chronic infection, though most are not aware they have the virus for years, as the latency period of a chronic infection is decades long. A person who is infected may initially experience mild viral symptoms and then show no signs or symptoms of chronic infection or perceptible active liver involvement until far into the stages of liver disease, 10 to 30 years later, at which point damage will be difficult if not impossible to treat. At that point, a possible consequence is liver failure unless a transplant can be performed. But what can be said about the latency period of a decade or more? For anyone familiar with its use around HIV in the 1980s, the word “latency” carries a particular sense of foreboding – what was at first characterized as latency was a period of multiple, complex, and sometimes subtle transformations – somatic, neurological. The relative scarcity of research into HCV co-occurring conditions thus far has created a kind of rhetorical latency around the unknowns buried inside that very term. The messages of early detection and treatment are not currently the focus of even those media campaigns that have been launched.²² Instead, the focus among current agency media campaigns is on behavioral risk factors around transmission, with the goal of bringing down the rate of new infections. This policy mirrors the approach used for emergent pandemics: treatment is a secondary level of media messages, beneath directives on infection routes and how to limit transmission. This is reflected not only in agency materials, but also in a wide range of public health campaigns internationally. The folly of ignoring millions of people in the latency phase has led former US Surgeon General C. Everett Koop to demand changes in policy and practice, but his arguments have been ignored for a decade and more.

The Invisible Pandemic: HCV as Unmediated Virus

“When is a pandemic not a pandemic?” This was the quip that Cohen used as the title for her CNN report on the WHO's change in description of what constitutes a pandemic. In the case of HCV, we might ask the same question – not because the virus is limited in its severity of illness and deaths, but because it has failed to trigger a major public health communication response despite the magnitude of its severity over time. A quick rejoinder to the question would be that a pandemic is not a pandemic when it is announced but no public health media response follows. Taking the tongue-in-cheek approach a step further, let us blame the virus, taking to task its own recalcitrant invisibility. The slow pace of public health response seems to mimic the pace of viral progression. A report issued in 1998 by the US Congress Committee on Government Reform and Oversight warned of the consequences of continuing to handle the “silent epidemic” with a “mute public health response” (US Congress Committee, 1998). Despite the strong and direct language of this document and the ample evidence of the problem, surprisingly little has been done in the way of a concerted public health response in the interim. Activist, advocacy, and private non-profit organizations have taken up the slack in limited ways, but this can be no match for a pandemic of this magnitude, which requires coordinated national and global responses – like those we saw for the H1N1 emergency. The slow pace of HCV chronicity in the public health response was ironically modeled by the WHO in 2010. The public waited while the agency, widely regarded as setting the example for national agencies around the world, quite literally removed its online fact sheet on HCV for a full year or more, replacing it for that period with this “temporary” message to the world: “this fact sheet is being updated.”²³

It is encouraging to know that in 2009, the CDC's Division of Viral Hepatitis began fundraising and consumer research for a national education plan, to be called “Know More Hepatitis.” Although by summer of 2011 it had not yet been launched, the campaign is in its first of three phases: formulating strategy proposals for media outreach and research.²⁴ Impetus to move the communication agenda along comes from a widely anticipated report by the Institute of Medicine. This document repeats the basic message of the congressional report a dozen years earlier, calling for a national strategy for prevention and control of hepatitis C, and hepatitis B as well. The report was based on a new comprehensive study suggesting, unsurprisingly, that “these diseases are not widely recognized as serious health problems” and that current strategies of prevention and control are not working (Institute of Medicine, 2010). The report is undoubtedly important. Yet the degree to which it repeats the message of the 1998 report with the same apparent urgency gives it the character of a shadow, a ghost of a previous message. Its message is welcome but uncanny to encounter in the deep and long space that is emptiness of the avisual shadow archive that constitutes the response to the last iteration of this point, a space populated with so much more pathology and so many more deaths now counted.

If we are to imagine this pandemic to be like the weather, we might envision a stalled cloud, a system so vast we cannot sense its boundaries, its shape, or its direction of movement. One might have assumed that the surveillance and communication of HCV would unfold online like other news and public health issues in the 1990s, and that by the 2010s it would feature prominently in public health social media campaigns. The HCV campaign could have served as a model for coverage of later outbreaks like peanut salmonella and H1N1, just as AIDS media activism and advocacy campaigns served as a model for innovations in advocacy and cause marketing for breast cancer. But this was not the case. In this context of invisibility gone viral, we find a key figure from the AIDS crisis resurfacing in a new and unique role. C. Everett Koop, best known as the former US Surgeon General who in the 1980s was sidelined by Ronald Reagan when he tried to draw attention and resources to the impending crisis around AIDS, established a prominent site dedicated to HCV information through Dartmouth's medical school. His media campaign identifies the HCV pandemic as the locus of “an impending human tragedy” without an adequate health communication response by national and world health agencies. Koop and others have criticized the CDC, and the general focus on the tip of the iceberg, for being both unbalanced and foolhardy. They argue the CDC strategy is missing the inevitability of an impending crisis that will be magnified precisely by willfully looking away from an emergent disease whose status is slowly unfolding over time.

The temporality of HCV does not match the temporality of either social media or health communication, organized as they are around immediacy, change, and anxious watching and waiting for the sudden change. Ironically, the outcomes Koop warns of are characterized not by uncertainty but by a relatively high degree of probability over time. In an era of anticipatory surveillance and emergency communication, it is easy to ignore what is slow and what swarms around us like an immersive cloud, a mediating force the very pervasive of which leads us to fail to notice it – precisely an avisual shadow archive. The problem is not simply that the CDC is sidestepping its ability to address the emergence of the disease at a critical stage. The larger problem is that, while there is theoretical work on health and representation, we do not have a theory that captures the particular conditions of slow chronicity, avisuality, and banality that characterize this virus and its pandemic. HCV speaks to the media studies profession dramatically: it is a condition that calls out for new ways of thinking about mediation, signification, and knowledge concerning a matter with an urgency that is all about duration and visibility, but which challenges the limits of those very key terms of mediation. It gives us a vital text for thinking through absence as a constitutive force for which making visible is not the social cure.

Since the 1980s and 1990s there has been a decline in interest in semiotics and representation among theorists of the body. At the same time, there is an increase in attention to the phenomenal (if not also phenomenological) and affective experience, invoking, if not explicitly adopting frameworks to study, the empirical body. This shift to provisional, phenomenal, and experiential ways of interpreting embodiment has been in tandem with the rise of digital social media as a primary context through which health experience is negotiated. The affective turn accompanied the digital turn, and with the rise of social media, the mainstream media–countermedia split was no longer really viable. The digital turn to social media in the context of health and care of the self goes against the grain of claims made in new media theory about embodiment and the virtual. The media model that has emerged most prominently through social media has not foregrounded knowledge and information and their structures and protocols. Instead, it has emphasized the embodied engagement and interaction with healthcare information in social networks, in one's private spaces, as a source of involvement and imagined future resolution. Emphasis rests not on the knowledge or information shared, but on the condition of sharing and listening as what we notice and measure to evaluate a given health organization's effectiveness. That fact gets missed in most health media campaigns that try to use social media to generate information. Paula Treichler's 1999 essay, “How to Have Theory in an Epidemic,” was a pivotal text: pivotal in the shift from the video–television–print media nexus in which AIDS activism of the 1980s and early 1990s was carried out, and to the convergent digital media–web–social media–mobile phones framework in which emergent pandemics are borne today. It is also pivotal in the shift in health and science discourse about matters of emergency from epidemic to pandemic, and in the shift in discursive epistemes from knowledge, information, and the human subject to embodiment, experience, and intersubjectivity as the terms by which we measure the effectiveness of a given set of practices, tools, and resources for world, community, and self care and health. The theory about which Treichler wrote was not just critical theory; it was also the scientific theory of the era. “AIDS treatment activism did not depend on an us/them division,” she reminded her readers. Out of available resources it assembled a complex conception of the body framed as “provisional but nevertheless as a theory for everyday life” (Treichler, 1999, p. 298). Treichler's essay told a narrative about a “radically democratic technoculture” dedicated to “getting drugs into bodies” (Treichler, 1999, p. 313). Her assertion, twice in this essay, that AIDS activism was about this treatment objective as well as about the mediation and signification of HIV/AIDs should be recalled in this moment of social mediation as we consider how to have social media in an invisible pandemic, where we must once again do this work of understanding the close relationship between the semiotic nature of a virus, its linguistic and material sensibility, and its impact on bodies over time. We might say that HCV, unlike HIV, has had no narrative arc. It is too late to ask how to have theory in an epidemic, as we must now ask not only how to have theory so far into a pandemic, but also how to have theory for an avisual virus in a shadow pandemic at a weak moment in theory. Media studies is not the only field with chronic problems concerning time and visuality; in public health the problem is far more acute, and the stakes are higher. But when prevention is tied to social mediation it falls to media theorists to make strategies for working through the troubling logic of pandemic futurity which makes up the particulate cloud in which we compute and mediate as a way of life.

NOTES

1 The title of this essay references the title of Paula Treichler's classic essay of 1991, “How to Have Theory in an Epidemic: The Evolution of AIDS Treatment Activism” (Treichler, 1999).

2 The selection of H1N1 buttons, badges, and widgets can be viewed at http://www.cdc.gov/SocialMedia/Campaigns/h1n1/buttons.html. Retrieved July 3, 2011.

3 Chew and Eysenbach announced that they had counted over two million tweet posts with “swine flu” and/or “H1N1” as keywords using Infovigil, software that offers automated coding for an infodemiological content analysis (Chew & Eysenbach, 2010). For an explanation of the terms “infodemiology” and “infoveillance,” see Eysenbach (2009).

4 See, for example, the CDC “Don't Get, Don't Spread” video linked to its “H1N1 (‘Swine Flu’) and You” home page, in which Dr. Joe Bresee of the CDC Influenza Division, appearing in his military uniform with pocket rank insignia fully legible in the shot to connote authority and to inspire confidence in his ability to protect, explains how not to get the flu. Hand-washing, depicted in detailed close-up on hands lathering under a running faucet, is the first cutaway from talking heads for a short sequence of lines of defense that includes one other example: a close-up on vaccine needles. Release date October 30, 2009, retrieved June 2, 2011, from http://www.cdc.gov/CDCTV/IR_DontGetDontSpread/index.html

5 On the question “when is an epidemic not an epidemic?” see Green et al. (2002).

6 On the analysis of chronicity see Elizabeth Freeman (2010), who offers a brilliant means of understanding the nuances of temporality. Although Freeman does not analyze medicine or health, her book holds great potential for theorizing the temporality of illness experience and pandemic time.

7 On self-health as a progressive feminist practice, see Taylor (1996), Copelton (2004), and Murphy (2004). For a critique of self-health as a product of the neoliberal emphasis on the individual and personal choice, see Beck and Beck-Gershein (2001) and Eisler (2004).

8 An example of the routine intersection of technological advances in medicine and the military is the history of sonography as an underwater military detection device and as medical ultrasound diagnostics. See Yoxen (1987) and Kevles (1997, p. 234) on innovation in sonography across these domains. We should keep in mind the point made by Clay Shirky (in the Ted Talk noted as Shirky, 2009) that we should attend not just to the emergence of technological innovation but to its everyday, routine implementation and use, when the technology has become routinized and normalized. We might call the process interscriptive (drawing on the old language of inscription of a technique's ideology into a routine practice) to grasp the convergences of discourses and techniques across domains.

9 For example, Richard Besser, acting director of the US Centers for Disease Control and Prevention (CDC) at the time of the H1N1 crisis, was quoted in the New York Times stating that “investments in preparedness” led to early identification of the outbreak in the United States (New York Times, 2010).

10 Clay Shirky provides a good explanation of this concept of the social media consumer as producer in the Ted Talk listed herein as Shirky (2009).

11 Wiebe (1951–1952), as quoted in Kotler and Zaltman (1971). Kotler and Zaltman drop a clause from the Wiebe source and make brotherhood a proper noun. The original reads: “Why can't you sell brotherhood and rational thinking like you sell soap?” (Wiebe, 1951–1952, p. 679). For a detailed discussion of the rise of social media in public health, see Walsh, Rudd, Moeykens, and Moloney (1993).

12 The Payne Studies was a series of research studies conducted between 1929 and 1932 to consider the impact of movies on childhood morals and behavior. It is notorious for promulgating moralistic views about media influence and was used to justify censorship in the US film industry. See Black (1996).

13 Wiebe's emphasis on advertising's impact on behavior, not promotion of goods, is a fruitful avenue of investigation for future media studies work on the history of advertising. Interestingly, his concerns would later include the promotion of civil rights and moral conscience (Wiebe, 1958).

14 A phase 6 pandemic, according to the WHO scale of 2009, entails outbreaks in at least two countries in one of the WHO's regions, plus a third country in an additional region. For an account of the debates about scales and definitions, and for a representation of the pandemic scales used by the WHO, see Doshi (2011).

15 I borrow the concept of the shadow archive from Akira Mizuta Lippit who, in discussing Jacques Derrida (1998) on the archive of secrets (“of the secret itself there can be no archive”), proposes a theory of the shadow archive to account for that which is avisual and its effects on the visual world (Lippit, 2005). Significantly, Lippit considers a crucial matter of the body, the temporality of pathology, and social mediation through visuality and visibility: his subject is the trace of the bodies materially impacted by light in the atomic blasts at Hiroshima and Nagasaki, and the phenomenological and epistemological changes that unfolded from the time of radiation exposure. Radiation pathology follows a complex chronicity, stochastic time, with its own complex dynamics of visuality and avisuality.

16 An example of an early watching and warning system's failure is the Indian Ocean system for early warning of imminent tsunamis, which has been under development since the loss of 200,000 people to a tsunami in Java in 2004, followed by a loss of 500 people to a tsunami in 2006. The system entails installation of seismic detection instrumentation, ocean pressure sensors, and tide gauges as well as communication alert systems. See Smith-Spark (2006).

17 By comparison, the estimated number of people living with HIV rose from around 8 million in 1990 to 33 million by the end of 2009 (UNAIDS, 2010). See UNAIDS (2010) for further figures.

18 Forty to fifty percent of people with HCV genotype 1, the most common genotype in the United States, respond to the current standard treatment. A higher percentage of people with genotype 3 respond successfully. The regimen has significant physical and psychological side effects, including compromised immunity and depression, and therefore not everyone can sustain the treatment. At the time of this writing, a third retroviral drug, telaprevir, became available as an addition to the standard treatment of interferon and ribavirin, and its inclusion has been shown to increase the rate of response among those with genotype 1. See McHutchison et al. (2010).

19 For an example of the use of quotes and discussion of the issue of cure, see BBC News (2007), where it was reported that “the treatments were known to work initially but it had been unclear whether the virus would come back,” and a cure rate of 99% was reported for patients followed for seven years after undetectable levels of HCV had been sustained. On the use of the language of cure in quotes and the problematic tendency to emphasize emergence in news about cure, see Metcalfe (2007). In late 2010 the protocol at some hospitals was six months to a year, even in the case of a drop in viral load to undetectable in the first three months. The possibility of lingering particles of virus hiding out within a hard-to-detect place, for example in bone marrow, makes the determination of treatment duration difficult to fix. Stretchy and slow time is found even in the weekly treatment at the level of the body. The interferon is “pegylated.” Pegylation is a technique that makes the drug stay in the body longer by providing a mechanism that makes it attach to other molecules in the blood, hence an injection may maintain effectiveness over many days, making it possible to administer interferon in weekly rather than daily injections.

20 Discovery is of course a fraught concept insofar as it buries the complex economy and politics of laboratory practice and personal and national interests behind the genesis of scientific facts. International contest over the discovery of HIV is well documented. See Feldman (1992). The discovery of HCV is similarly subject to questions about authorship and questions of related patent matters.

21 I use the term branding to suggest the pervasiveness of this tag. A Google search for the words “hepatitis C invisible” conducted on July 2, 2011, yielded over 800,000 hits on sites not devoted to hepatitis specifically, ranging from nonprofit health organizations (e.g., the Chronic Illness Alliance), to news media outlets (e.g., Newsweek has published a number of stories featuring this concept in the past decade), to professional journals (e.g., the National Review of Medicine).

22 Portions of this essay analyzing media campaigns and the precedence of HIV/AIDS media campaigns have been omitted here due to length and will be the subject of another publication. Some of the more effective HCV media campaigns are the Hepatitis C Project campaign, the Hepatitis C Harm Reduction Project (a resource for illicit drug injectors), Catalyst Foundation's use of social media to promote TextGiving microcharity (where $10 donations can be made by text for HCV testing and treatment), and the 2006 “Face It” campaign of the UK National Health Service featuring faces representing the vast range of people with HCV.

23 The temporary message directed inquiries to a generic email address at the WHO. The personal email correspondence that I conducted with communication officers at this address revealed that other pandemics (most urgently malaria) were consuming the time of an overworked staff, making it impossible to complete and post the updated HCV fact sheet for more than a year. An updated HCV fact sheet was posted in June 2011. See WHO (2011).

24 Personal notes from National Hepatitis Campaign Webinar led by Cynthia Jorgensen, Lead for Communication, Education, and Training, CDC Division of Viral Hepatitis, July 8, 2011.

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