PRAGMATIC RESPONSES TO THE HIV EPIDEMIC: A SISYPHEAN TASK?
All epidemics comprise not only similar characteristics, but they often elicit similar responses even in different historical and geographical contexts (Rosenberg, 1989; Lindenbaum, 1998). However, unlike other epidemics that have struck humankind, HIV/AIDS is regarded as a postmodern epidemic whose response has generated extraordinary medical research and a variety of institutional interests and approaches (Denis, 2006). The global response to HIV/AIDS has always been a four pronged spectrum focusing on i) prevention from HIV infection, ii) treatment of the HIV infected, iii) caring of the infected and iv) supporting the infected and affected. However, the response has had very limited success with regards to its containment (Iliffe, 2006). Years of engagement with the epidemic has seen not only the continued spread of HIV, swelling number of people living with HIV(PLHIV), and loss of human life but also the growth of HIV/AIDS from an epidemic to a pandemic (Denis, 2006;
Singer, 1998). The relentless, but futile, engagement with the epidemic illuminates two important aspects. First is its uniqueness from other epidemics, and second is the question of when and how the epidemic may come to closure. As noted in the introduction of this thesis, based on the futility of the relentless engagement with the epidemic, the second question leaves one wondering if responding to HIV/AIDS is not a mere Sisyphean task.
Clearly though, this challenges society to think of nuanced and effective ways of responding to the epidemic.
Along the prevention – support continuum mentioned above, a corpus of approaches have been utilised in the global response to HIV/AIDS. The sub- Saharan Africa region has been presented as an archetype of the tragedies that
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the virus has wrought upon human welfare. South Africa, in particular, is a country which is known to bear an inordinate share of the epidemic not only in the continent but the whole world (UNAIDS, 2007). This chapter reviews three approaches that have been employed in the HIV response at the prevention level in South Africa. These are the bio-medical, the behavioural and social change as well as the structural approach. While some successes are attributed to these approaches (Kelly, et al., 2012; Barnett and Whiteside, 2002) the chapter establishes that the engagement effort has been less than satisfactory in containing the epidemic.
The HIV prevention spectrum, comprises of three intervention areas namely;
pre-exposure, point of exposure, and treatment for prevention from infection.
This study questions the conspicuous absence of voices of PLHIV within these interventions. Most importantly, even when PLHIV are included at the end of the spectrum, they appear only as passive patients, not as active participants in prevention efforts (see Osborne, 2006). From a culture-centered approach to social change (Dutta, 2011); a framework that guides this study, the chapter suggests an approach which, on the HIV prevention spectrum, privileges a deliberate and meaningful participation of the many PLHIV whose number is continuously swelling on a daily basis due to increased access to antiretroviral therapy (ART). Indeed the increased number of people who live longer with HIV forms an incessant and formidable source of infection. This reminds us of a challenge informing the overall objective of this study: exploring ways through which PLHIV can meaningfully participate in HIV prevention efforts.
In order to situate the global response to HIV/AIDS in a meaningful context, the chapter begins by unpacking the history of the epidemic. To achieve this task, HIV/AIDS is viewed in light of other common epidemics in human history particularly exploring their progression and containment. This is done specifically to highlight the uniqueness of HIV/AIDS whose architecture and wide range of responses constitute the remainder of the chapter.
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The (dramaturgical) architecture of HIV epidemic: Whither Act 4?
Explaining the nature of epidemics, Charles Rosenberg (1989) observes that all epidemics unfold like a play [my emphasis]. He points out that epidemics are
“episodic” and have a dramaturgical form that “starts at a moment in time, proceed on a stage limited in space and duration, follow a plot line of increasing and revelatory tension, move to a crisis of individual and collective character, then drift towards closure” (Rosenberg, 1989: 2). This analogy is reiterated by Lindenbaum (1998:40) who finds all epidemics to have a
“common architecture or perhaps choreography” particularly as it relates to their emergence, progression, impact, public response and containment/closure). For Philippe Denis (2006), this dramaturgical architecture and choreography is characterised by the following four themes unfolding through four different “acts”. The first act illuminates a theme of denial and gradual acceptance of the epidemic by social and political leaders;
the second highlights the indecisive effort of the authorities to curb the epidemic; the third concerns effective and more informed collective action; and the fourth and last act shows the containment of the epidemic with “survivors counting their dead and reflecting on ways of avoiding a similar catastrophe in the future” (Denis, 2006: 20).
Viewing HIV/AIDS from the above perspective entails its placement on par with other epidemics such as the Black Death that plagued Europe around 1340, the Bubonic plague in India during 1896, Kuru in Papua New Guinea around 1930 among other known epidemics that have struck humankind. The Black Death that killed almost a third of the European total population between 1346 -1350, for example, led to the killing of Jews by Christians as a way of controlling it (Singer, 1998). The Jewish population was killed because they were considered a key population responsible for the spread of the disease.
Indeed when HIV/AIDS was discovered, it took some time before it was recognised as an epidemic. As noted in the previous chapter, its unexpected
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emergence in the West attracted initial responses that were modelled on the existing formulae on how to deal with an epidemic which had previously been employed to respond to past epidemics such as the Black Death. The largely rhetorical formulae included stigmatisation and victimisation of helpless marginalised population groups (Parker and Aggleton, 2002; Epstein, 1995;
Gilman, 1988).
However, as Rosenberg (1989) had already observed, HIV/AIDS cannot be entirely placed on par with previous epidemics that have since come to closure.
It is a modern and a postmodern epidemic especially looking at the speed with which it spread, the unprecedented medical research it has prompted, and a wide range of interest and anxiety that it has generated. Unlike past epidemics that - like drama - have come to a closure, a solution to the HIV/AIDS epidemic remains an enigma. Indeed, Denis (2006) agrees that the fourth act is no longer pertinent in the history of HIV/AIDS because a devastating toll continues to mount. Years of indecisive response to the epidemic characterised by the continued spread of HIV, swelling number of PLHIV and sheer loss of human life due to HIV/AIDS have all resulted in what I have surmised as a Sisyphean engagement with the epidemic. Most importantly, considerable agreement exists that HIV/AIDS ceased to be an epidemic but has grown to be a pandemic (Denis and Becker, 2006; Carael, 2006; Singer, 1998).
The uniqueness of HIV/AIDS from other epidemics is an issue. The origins and a stream of social and economic consequences of the HIV/AIDS epidemic are intertwined within an intractable, complex and casual long chain of relationships between the microscopic and the macroscopic worlds. This view is different from the Western scientific approaches that consider an epidemic as a
“chance event” or an “unfortunate agglomeration of probabilities” (Barnet and Whiteside, 2002: 70). HIV/AIDS can thus be understood as a post-modernist epidemic which, as these scholars suggest, is not a mere chance but a susceptibility which is tied to the complex economic, political and social
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aspects of a society (Campbell, 2003; Barnet and Whiteside, 2002). This complexity is perhaps one of the key characteristics that not only distinguishes HIV/AIDS from other epidemics but possibly make responses to it a Sisyphean challenge.
Perhaps due to its complexity, responses to the HIV/AIDS epidemic are characterised by a variety of institutional interests and a corpus of the approaches utilised but to a limited success. As Shula Marks (2002: 14) remarks, “governments and NGOs, national and international agencies, political parties, patients and their advocates and above all the pharmaceutical industry have all had their own and often conflicting perceptions and agendas in addressing the challenges” presented by HIV/AIDS. These perceptions are conceivably most evident in the ambivalent character of the response to HIV/AIDS. Since the beginning, the response has vacillated between discursive (discourse/communication) and pragmatic (action) interventions.
Having reviewed the discursive responses in the previous chapter, this chapter focuses on the pragmatic side of the response to the African epidemic - a region which, according to Segun Ige and Tim Quinlan (2012: 1) “epitomises the tragedies that the virus has wrought upon human welfare”. A comprehensive review of three broader approaches that have been employed in the global response to HIV/AIDS at the prevention level, namely the bio-medical, the behavioural and social change as well as the structural approach is offered.
Possibly due to the interconnected web of issues into which HIV/AIDS is woven, found within each approach are multifarious strategies that have been employed by many players - governments and NGOS - in HIV/AIDS programming in their different social, cultural, economic and political contexts as a response to the epidemic.
It is important to mention here that it is the structural approach (Laga and Piot, 2012; George and Sprague, 2011; Coates, et al., 2008) that underlies the
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ontological and epistemological underpinnings of this study as embodied in the culture-centered approach to social change (Dutta, 2011). This is precisely because success is deemed likely when affected communities are actively involved in efforts meant to find solutions to their problems. As a key population in HIV/AIDS dynamics, PLHIV therefore need to be involved in finding effective means of bringing the HIV/AIDS epidemic to closure (see Dutta, 2011). The structural approach has thus increasingly become popular due to many reasons. The two most important being; its ecological approach to HIV/AIDS expressed through its inclusion of the social and economic aspects of the epidemic, and its recognition of dialogue as an article of faith that privileges a possibility for listening to the infected, that is PLHIV. According to the culture-centered approach to social change (Dutta, 2011) discussed in Chapter Two, listening to subaltern voices disrupts the status quo through its articulation of alternative narratives which emphasis subaltern agency. One of the key observations of this study, however, is that PLHIV have not been meaningfully involved in efforts deliberately aimed at the prevention of HIV transmission other than in interventions aimed at enabling environment for increased access to treatment care and support. The study argues that the bio- medical approach which gives primacy to treatment has crystallised PLHIV as passive patients who simply require treatment, care and support. Yet, experience and research has shown that (health) policies and programmes which do not respect or engage concerned key stakeholders are doomed to face strenuous resistance and likely failure (see Lubombo, 2012; Storey and Figueroa, 2012; Kincaid, et al., 2007).
It is the above experience that has given impetus to the task this study attempts to undertake: exploring ways in which PLHIV can be meaningfully involved in social change communication for HIV prevention. Here approaches to HIV/AIDS are reviewed the aim being to show the position of PLHIV in these approaches. A meaningful appreciation of these approaches presupposes a
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consideration of the nature or rather the epidemiology of HIV/AIDS.
Epidemiology refers to a study of “the distribution and determinants of health related conditions and events in populations, and the application of this study to the control of health problems” (Katzenellenbogen, et al., 1997: 5). While epidemiology of HIV/AIDS allows examination of patterns of HIV transmission in terms of who is infected, where and how many they are, it does not reveal the political economy of HIV/AIDS, which is the social, political and economic characteristics which favour its distribution pattern. An understanding of both the epidemiology and political economy of HIV/AIDS, presented below, is quite significant for finding ways in which the transmission can be managed. For Tony Barnet and Alan Whiteside this allows for the designing of effective prevention interventions.
Modes and contexts of HIV transmission
HIV can only be transmitted through contaminated body fluids into the bloodstream. For Barnett and Whiteside (2002), unlike other diseases, HIV is not robust and is therefore hard to transmit. What emerges from this description of HIV is the irony that notwithstanding its ‘weaker nature’, HIV spreads rapidly among human beings. It is this irony which makes it necessary to examine the modes through, and contexts in which HIV transmission occurs. While there are several ways through which HIV infection takes place, there is general consensus that sexual transmission is the major driver of the global HIV incidence (UNAIDS, 2013). However, it has been found that certain sexual practices such as receptive anal intercourse are more efficient in facilitating HIV transmission than heterosexual sex (Mayer, et al., 2010). It has been noted in Chapter Three that in the West HIV/AIDS was initially discovered among homosexual men and became known as a gay related disease although it was later found among other social groups such as intravenous drug users and prostitutes. The spread of HIV to all these different groups of people is now known. There are various modes of HIV transmission
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which expose everyone to the risk of contracting HIV other than those previously suspected. The modes of transmission include unsafe sex, transmission from mother to child, use of infected blood or blood products, intravenous drug use with contaminated needles as well as other modes of transmission involving blood such as bleeding wounds (Barnet and Whiteside, 2002: 38). The degree of risk differs from one group of people to another as there are many other structural aspects such as social, economic, political, and environmental factors that directly affect HIV risk and vulnerability (Gupta, et al., 2008; Campbell, 2002; Singer, 1998). It is acknowledged that poor and powerless people, mostly in underdeveloped communities, are more susceptible to the virus than the rich and powerful. Accordingly, any response that seeks to be effective would therefore employ an epistemological approach that takes into consideration these structural aspects that make people more susceptible to the HIV infection.
Responding to HIV/AIDS continues to be one of the most important challenges facing the world today, especially in sub-Saharan Africa where most communities are poor and those most affected. WHO, during the directorship of Halfdan Mahler as Director-General, is reported to have been slow in its response to HIV/AIDS in the Third World, concentrating on primary health care. Mahler in 1985 dismissed HIV/AIDS as diversion from this focus, arguing that “if African governments continue to make HIV/AIDS a front page issue”, this would obscure its real health problems and “the objective of health for all programmes by the year 2000 will be lost” (Iliffe, 2006: 68). This position, however, changed in 1986 when WHO recognised that HIV/AIDS had become a major public health concern as with malaria. This resulted in the creation of the Global Programme on AIDS (GPA) whose key priorities were screening blood supplies in poor countries, training of medical staff in the clinical management of HIV/AIDS and counselling of those tested for HIV, public education for checking the epidemic in the absence of a cure, and preventing HIV/AIDS-
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related stigma and discrimination (Iliffe, 2006). It is clear from these focus areas that the view held by WHO in its initial global response to HIV/AIDS through the GPA adopted a bio-medical approach that is discussed further below. While these focus areas were important, HIV has been a complex phenomenon. It has since been established that HIV/AIDS is not only bio- medical but a “social issue located at the interfaces of a range of constituencies with competing actions and interests” (Campbel, 2003: 8)
Response to the HIV epidemic has seen a wide range of approaches being employed over time, beginning from individual focused bio-medical to the ecological and more complex structural approach. In Africa, response to HIV/AIDS has been riddled with governments’ slow response which if compared to the dramaturgical structure of the progression of HIV epidemic highlighted earlier can be located in Act I. The choreography of epidemics at this stage is characterised by the theme of denial and gradual acceptance of the epidemic by social and political leaders (Denis, 2006; Lindenbaum, 1998;
Rosenberg, 1989). For Ige and Quinlan (2012: 12) the delayed reaction of African political leadership has become an axiom in the recorded history of HIV/AIDS. This is argued to have contributed to the spread of HIV in Africa.
While it took longer for South Africa to respond to the HIV epidemic (see Tomaselli 2011), the South African government has recently made the HIV response one of its top national priorities (SANAC, 2011). The National Department of Health (DoH) has put in place a National Strategic Plan for HIV/AIDS and STIs that guides the national response to the epidemic (see SANAC, 2011). The plan outlines four key priority areas including HIV prevention topping the list.
Statistics show that the South African epidemic has reached a holocaust magnitude. According to the fourth population-based household survey that the HSRC has conducted with its partners to assess the state of the HIV epidemic in the country (HSRC, 2014) the overall national estimate for HIV
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prevalence among South Africans in 2012 was 12.2%. This shows an increase of almost 1.2 million more PLHIV in South Africa - an increase from 5,253,493 PLHIV in the 2008 to 6,422,179 PLHIV in 2012 (HSRC, 2014: 35). As with any other country or region, there is tremendous heterogeneity in HIV prevalence at different levels in the South African communities disproportionally distributed by age, sex, race, locality type and province (HSRC, 2014). By 2011 prevalence was 3.8% in Western Cape and 15.8% in KwaZulu-Natal (SANAC 2011: 9ff).
The majority of adult PLHIV (54%) live in just two provinces, KwaZulu-Natal and Gauteng. Of these, majority are women whose national HIV prevalence rate is higher (17.4%) than men (10%)(HSRC, 2014).
While recent statistics show that the African epidemic continues to be heterosexual, in South Africa HIV incidence is driven by three main factors, namely sexual transmission, injecting drug use and transmission from mother to child (HSRC, 2014; SANAC, 2011). Although other transmission drivers such as medical injections and infection control in health care settings, transmission through blood and blood products are recognised, by 2011 they were under control (SANAC 2011). According to the same report, while South Africa seemed not to have a major injecting drug use (IDU) problem, a problem with crack cocaine, especially among sex workers was growing (SANAC 2011: 12). By 2011, IDU thus seemed a minor contributor to HIV transmission. However, it was interlinked with other risk contexts such as growing homosexuality (SANAC, 2011).
Within the above modes of transmission, there are other important factors that are associated with increased transmission rates and the global inequalities associated with HIV transmission. As mentioned earlier, these are both bio- medical (Mayer, et al., 2010) as well as political and socio economic (Singer, 1998, Barnett and Whiteside, 2002, van Niekerk, 2001). In Africa, the political- economic factors associated with HIV/AIDS relate to unequal class, gender, sexual orientation, and racial relationships. As Singer noted in 1998, it is still