Treatment Scale Up- Failure of 3 by 5, Great Strides Made but Recognise That There Are

AIDS: Revised version, June 14th

Hope: a new way to look at the HIV epidemic

Sarah Bernays1, Tim Rhodes1, Tony Barnett2

1. Centre for Research on Drugs and Health Behaviour, London School of Hygiene and Tropical Medicine, London, UK

2. LSE Health, London School of Economics and Political Science, London, UK

Running head: Hope and the HIV epidemic

Correspondence: Sarah Bernays, [email protected]

Conflicts of interest: None declared

1 AIDS: Revised version, June 14th 2007

Hope: a new way to look at the HIV epidemic

Sarah Bernays, Tim Rhodes, Tony Barnett

Abstract There is currently a shift towards embracing ‘structural intervention’ approaches in HIV prevention and HIV treatment. We offer the concept of hope as an important new framework for researching HIV prevention and HIV treatment. We argue first, that hope is linked to capacity for behaviour change and helps us understand how social environments enable as well as constrain risk reduction. Second, we argue that hope helps us understand HIV treatment engagement and impact, especially uneasy relations between treatment access expectation and the lived experience of treatment delivery in environments characterised by fragile treatment systems. We conclude that HIV prevention should seek to create the structural conditions conducive to sustaining hope in the future, while drawing attention to the often unforeseen local effects of global discourses of HIV treatment promise which may offer an illusion of hope in certain contexts. We draw specific attention to the urgent need for interventions to tackle the adverse psychological and social consequences of fragile treatment delivery. Hope is an under researched concept in the social science of HIV prevention and HIV treatment. It offers unrealised potential, particularly for thinking about structural interventions in relation to managing HIV as a chronic illness and for maximising HIV risk reduction in resource-poor settings.

Keywords: Hope; Uncertainty; Risk environment; HIV prevention; HIV treatment; ARV

2 Hope: a new way to look at the HIV epidemic

Sarah Bernays, Tim Rhodes, Tony Barnett

HIV, like any epidemic, is above all a social event. Social sciences have been hampered in their contribution to understanding the epidemic by limited conceptualisation linked to an overriding concern with individual risk behaviours and cognitive-based approaches to risk reduction and treatment adherence. Some research on HIV prevention, treatment and impact mitigation has begun to grapple with concepts of risk environment [1, 2] and structural intervention [3], but these approaches are still not fully integrated.

Hope has for some time been recognised as an important factor in disease progression. [4, 5] We propose two ways in which the concept of hope can contribute to improving HIV prevention and HIV treatment. First, we offer hope as a framework for understanding the relation between risk, behaviour and the wider social and economic environment. Hope can be seen as a pivotal concept linking individual behaviours to social and economic contexts; a measurable manifestation of the ways that social and economic structures function as risk regulators for the individual. [6] We suggest that hope – a positive expectation of the future – is linked to capacity for behaviour change and is in part a product of the quality and characteristics of the wider risk environment. This conceptualisation clarifies some of the uses of the terms vulnerability and susceptibility which have been used to describe the link between socio-economic environments, individual risk propensities and HIV infection [2, 7, 8]. Appadurai has explored similar ideas through the concept of aspiration.[9] Looked at from this perspective, we may see the implications for how HIV prevention interventions may seek to create environmental conditions conducive to securing and sustaining hope as part of wider efforts enabling risk reduction.

Second, we offer hope as a useful framework for understanding the social environment of anti-retroviral HIV treatment (ART), and in particular the relation between treatment access, delivery and security. Here hope provides a heuristic device for investigating the uneasy balance between overarching narratives of hope and promise generated by global discourses of ART scale-up, and local lived experiences of ART uncertainty in the context of fragile treatment delivery systems. Taken together, individual and group hope levels can be seen as a critical variable in securing capacity for HIV prevention and HIV treatment. We note that certain environmental conditions may puncture or limit hope, leading to a lack of investment in the future as realised through engagement in HIV prevention and HIV treatment. It is therefore at once necessary for HIV prevention interventions to create the structural conditions conducive to securing hope and important that global discourses of

3 HIV treatment promise do not offer merely an illusion of hope to people living and working with HIV/AIDS.

Hope, risk and HIV prevention It is no longer realistic to consider the problem of “risk” merely in relation to individual behaviours. Thus:

“Continuing misunderstanding of the nature of the problem, based on wrong assumptions about the drivers of other people’s sex lives, will result in waste of resource on inappropriate policy recommendations and interventions. If this realisation continues to elude politicians who ultimately determine the direction of much “prevention” policy, the resulting morbidity, mortality and consequent long term social and economic – and even political – costs will continue to accrue.”[10]

While it is established that health outcomes and health risk behaviours are unequally distributed in all societies,[11, 12] the relation between health and poverty is not direct, being mediated through poorly understood pathways from social structure to individual health outcomes.[13] The theoretical and political challenge is to deploy insights about the ecology of risk pragmatically. This involves developing social and structural interventions for HIV prevention that are evaluated by the common criteria of impact, effectiveness and cost.[14] The building blocks for such a pragmatic engagement rest on two foundations: first, recognition of the links between individual risk behaviours and the environments in which these occur; second, clarity about the ways in which different environments permit differing degrees of hope for the future and thus longer or shorter decision horizons for individuals.

Hope is a fundamental and measurable concept for linking individual behaviour to the characteristics of the surrounding risk environment.[15, 16] The environment is perhaps best thought of as a risk regulator of individual behavioural decisions, imposing constraints and opportunities that shape behavioural risk factors.[17] We propose that the concept of hope is a missing piece of the jigsaw linking the individual to the environment. Whereas some environments permit hope for a future, thus enabling individuals to take a long term perspective on their current behaviours, other environments have the opposite effect, resulting in harmful sequelae for individuals and in the case of an epidemic of communicable disease, for the wider society. As illustrated by Figure 1, we hypothesise that high risk environments link with weak hope, and thus also, weak capacity for

4 investment in the future, including through HIV prevention, whereas low risk environments secure the presence of hope, and thus also, stronger capacity for HIV prevention.

Figure 1 The relation between hope and HIV prevention

further increases risk

Weak capacity for investment High risk environment Low hope HIV prevention

Strong capacity for investment Low risk environment Secure hope in HIV prevention

further reduces risk

A growing body of research links aspects of the social environment to risk behaviour and health inequality.[17, 18] Important here is the embodiment of social conditions; a process whereby wider social forces shaping health opportunity and inequality are internalised over time by individuals. Evidence exploring health inequalities show links between the environments people occupy and perceptions of stress, autonomy and self efficacy, which in turn shape the self-regulation of risk behaviour.[18, 19] Some characterise this process as a kind of oppression illness in its effects among the socially excluded, including populations vulnerable to HIV.[20] In short, environments are regulators of hope and hope shapes risk decisions.

Two examples show how socio-economic environment regulates risk taking and future discounting. In the first, excess deaths in the Chicago heat wave of 1995 were associated with decisions by older, chronically sick and immobile people not to purchase air conditioning equipment while at the same time fearing opening their windows to gain adequate ventilation. [21] In the second, the US obesity epidemic is shown to be closely related to processes of de-urbanisation and de-industrialisation .[22-24] These studies illustrate the influence of the social environment in mediating health behaviour, privileging the accommodation of immediate risk over investing in health considerations for the future. Just as research shows links between social environments conducive to stress or

5 uncertainty and health inequality,[17-19] HIV prevention research needs to investigate links between environment, hope and capacity for risk reduction.

Hope and HIV treatment An international HIV treatment revolution, with a goal of near universal access by 2010, aims to help unlock many low income countries, particularly those in Sub-Saharan Africa, from a cycle of vulnerability in which HIV epidemics interact with poverty and other forms of inequality.[25, 26] Consistent access to ART creates an opportunity to curtail morbidity by reducing HIV to a manageable chronic illness, as well as increasing the capacity of people living with HIV/AIDS and their carers to maintain their livelihoods and economic productivity. In low income settings, HIV treatment offers the possibility of reducing short term survival decisions which jeopardise long term survival, encouraging investment in the future, with the result of mitigating against household dissolution and intensification of poverty. The provision of ART may be an important component in HIV prevention through influencing the degree of hope associated with HIV diagnosis and future.[27]

The relative success of global HIV treatment scale-up has generated a great deal of hope. [28] The World AIDS Conference of 1996 was themed “One World, One Hope” to signify the advent of ART. While we are recently reminded that some African delegates displayed banners reading “One World, No Hope” to signify major inequalities in treatment access in low income countries,[26] the end of 2006 saw great strides toward global access to free HIV treatment. More than two million people in low and middle income countries are now being treated with ART.[29] However, in many parts of the world, access to ART remains uneven and scarce.[30] Structural constraints on HIV treatment access and delivery produce fallout from this optimistic discourse of hope, which is absorbed by individuals delivering, receiving and waiting for treatment. Such fallout is likely to shape individuals’ perceptions of their futures with ART. The importance of mental health care in ART delivery is recognised,[31] but understanding and responding to the adverse psychological and social consequences from fragile treatment delivery remains largely unaddressed.

The progress of HIV treatment roll-out in low income and transitional settings is hampered to varying extent by financial, organisational and physical obstacles.[32] There are reports of inconsistent treatment delivery from a breadth of regions. [33-36] While unsurprising given the enormity and contextual realities of the scale-up effort, little rigorous work has examined how individuals and communities navigate such uncertainty. For instance, the environmental and bureaucratic constraints leading to the “torpid pace” of the treatment roll out in South Africa has been said to have “squandered hopes”, resulting in a politics of

6 rationing by treatment providers and dashed treatment expectations for people living with HIV.[30] Those with established treatment access remain vulnerable to the fragility of donor dependent treatment delivery.[37] A temporary suspension of Global Fund support to Uganda in 2005 introduced serious uncertainties about the continuity of HIV treatment. This was amplified locally through a combination of rumour and anxiety. Concerns about the sustainability of HIV treatment supplies in Uganda remain, with occasional local press reports that ARVs have “run out”.[38] Improved understanding of the fallout experienced from the disjuncture of expectation and promise on the one hand, and experience and uncertainty on the other, is practically and ethically necessary as an aid to developing treatment support interventions for individuals as well as cautionary lessons in relation to raised expectations, hope and disappointment.

Understanding hope in HIV treatment Much can be gained from researching narratives of hope and uncertainty related to HIV treatment. Sociological research in rich countries found that ART altered conceptualisations of HIV as well as of risk, security and future. These shifts have been interpreted as ‘risk productive’ as well as ‘risk reductive’. For example, the physical renewal associated with HIV treatments has enabled renegotiation of social identities, roles, relationships and temporal orientations;[39, 40] while the recession of imminent death may bring new uncertainties in relation to perceptions of life expectancy, identity as long term survivors, and treatment side effects, adherence and treatment resistance.[41-43]

The extent to which HIV treatment is experienced by people living with HIV as a solution to risk, as the promise of hope, or as risk potential varies widely given differences in treatment context. While hope is defined broadly as a positive expectation of future,[44, 45] the meanings of time horizons are place specific.[46] Social science research in rich world settings has examined the role hope plays in patients’ management of chronic illness, as well as HIV/AIDS,[44, 47-49] yet these studies may be inappropriate to environments in which acute vulnerability to illness is not experienced as major ‘biographical disruption’,[50, 51] and in which risk and insecurity are dominant characteristics of existence. The behaviour outcomes informed by HIV diagnosis, the opportunity of treatment access, and individuals’ perceptions of future may be quite different in settings characterised by intense poverty, daily struggle, high HIV prevalence and fragile HIV treatment delivery. [26]

Alongside the ‘risk reducing’ promise of HIV treatment related to health improvement and renewal of productivity, it is important to explore the possibility of ‘risk producing’ consequences of treatment opportunity. For example the fallout from the experience of

7 fragile delivery has implications for patients’ physiological and psychological well being, as well as for future illness management, adherence and viral resistance. [52] It is unknown, for example, how the management of HIV as a chronic condition in low income settings will be balanced alongside ‘new’ risks such as viral resistance and treatment side effects [39, 41, 43] and ‘pre-existing’ risks, for example access to basic life-resources such as nutrition, finance and relationship security as well as risky behaviour and reproductive life choices associated with treatment optimism.[53, 54]

We suggest that an environment which fosters hope in access to ART and in the delivery and outcome of ART is a critical factor mediating risk and life decisions. As illustrated by Figure 2, we hypothesise that environments characterised by fragile HIV treatment systems foster the loss of hope, in turn linking with weakened capacity for investing in the future through HIV treatment engagement. While environments offering stable and secure HIV treatment are not without risk or uncertainty (as we have noted above), they may serve to maintain hope, and thus also, a long term perspective realised through HIV treatment engagement.

Figure 2 Hope and the HIV epidemic

Secure High High treatment delivery hope engagement

Opportunity to receive ART

Fragile Low Risk of Weak capacity HIV delivery hope disengagement High risk Low for investment treatment environmen hope in HIV need t prevention Household Weak Low Disengagement Health vulnerability opportunity to hope and failure vulnerability (reduced economic receive ART productivity, orphaning, etc) Low risk Secure Strong capacity environment hope for investment in HIV prevention

Figure 2 highlights the need for interventions which create environments conducive to securing hope. We are arguing that long term successful HIV prevention and treatment requires environments protective of hope, and which promote as well as sustain a positive expectation of, and investment in, the future. This means it is crucially important to protect against the creation of an illusion of hope through global promises which can not be met

8 locally. Within these boundaries, it is equally important to invest in social and structural interventions which are protective of hope, and these include: improved treatment system delivery; systematic reviews of treatment systems prior to scaling-up; psychosocial support for staff delivering ART and people receiving or awaiting treatment; increased attention to treatment literacy and communication of treatment expectations, including in relation to rationing; contingency plans and emergency treatment funds in situations of treatment disruption or shortages in supply; enhancement of community advocacy and links to community support organisations; and linked nutritional and healthcare support. [26, 30, 55, 56]

Importantly, Figure 2 also shows how the relations of hope connect HIV prevention and HIV treatment in long term perspective. In risk environments where the sustainable efficacy of HIV treatment roll out and engagement is reduced, there are potential generational effects in creating environments susceptible to HIV risk as well as to limiting hope in the future. For example, a child whose parents have died of AIDS due to the ineffective delivery of, and weakened capacity to adhere to, HIV treatment is situated in a higher risk environment to contract HIV, than if she or he had been parented into early adulthood. [57] Hope – or more specifically, environments in which hope is secured and sustained – protects against this generational cycle of HIV risk production.

The need for an emic perspective Despite the pertinence of delivery in shaping the social impact of ART, there is a marked absence of research capturing the lived experience of HIV treatment opportunity in the context of global treatment scale up. This is especially the case in low income settings, reflecting a lack of qualitative or ethnographic research capacity and a lack of emphasis on research which is critically reflexive of internationally endorsed interventions holding so much promise and any possible fallout from the illusion of hope.

As with HIV prevention, the primary focus of research on target reaching and treatment adherence places the burden of responsibility on the individual.[58] The capacity of the treatment system to adhere to its delivery commitments has barely been researched, and there are few studies exploring the effects of how the treatment promise, and insecurity of its provision, is experienced. [56, 59] We therefore emphasise the need for studies of the social impact of ART to capture the perspectives of those delivering, receiving and hoping to access treatment.

We believe that the complex and pervasive impact of fragile treatment delivery on the everyday lived experience of people living with HIV/AIDS within this current period of

9 treatment scale-up is best captured by qualitative methods, and ideally through treatment ethnography. Ethnography is a distinct form of qualitative research, emphasising holism (understanding the social environment of lived experience), immersion (understanding social relations through engagement), and triangulation (comparing multiple accounts and forms of data). Capturing the narratives of hope, risk and treatment experience among those delivering, receiving and eligible to receive ART is a fundamental step to informing treatment delivery and generating an empirically informed ethics of treatment provision.[47- 49]

Understanding emic perspectives of hope related to HIV treatment through ethnography leads to better grounded survey and evaluation studies of treatment outcome and adherence, as well as to hypotheses linking hope and risk environment which are potentially testable through quantitative designs. Taken together, there is a need for multi- methods research capable of understanding how treatment experience, expectation and outcome is linked to environment.

A case example in HIV treatment uncertainty Drawing on depth qualitative interviews with people living with HIV/AIDS (n=42) and delivering (n=18) HIV treatment, we undertook social science research documenting the lived experience of HIV treatment in Serbia and in Montenegro, an environment in which treatment delivery is experienced as inconsistent.[33] Findings highlight how people living with HIV/AIDS navigate their treatment and life decisions in a climate of pervasive uncertainty. Treatment inconsistency associated with enforced treatment interruptions and regimen changes feeds uncertainty, absorbed by patients as anxiety:

“You can’t rely on anything, that’s the problem. You cannot rely that there will be medications. There’s always some shocking news ‘Oh, there will be no medication, there’s no medication’.” [HIV positive female, 41]

“There is the big question of how to manage it. Will you get enough supplies for this period or not? These are problems following problems you know.”[HIV positive female, 40].

As one HIV positive person reports, the weak HIV treatment delivery system affects the psychological state of people: “They fall into depression. They feel they have no future”. Such uncertainty and anxiety is exacerbated by an awareness of dependency upon fragile and unpredictable systems of treatment and expertise (“We are dependent on others”; “We cannot provide medicines for ourselves”; “If you are lucky someone remembers to call you and tell you to run to the clinic”). We have found that the HIV treatment experience feeds a cycle of risk production, with the consequence that some patients fluctuate between hope

10 and hopelessness, between managing their HIV as a chronic condition and as a terminal illness:

“We started to be desperate at that time because somebody who has been on treatment for a few years, suddenly they found hope again and when you don’t have treatment everything is lost.” [HIV positive female, 41]

“If the purpose of all this is to improve quality of life, for these people stress is the cause of bringing this quality a step lower… Alright, we can’t beat it, we can’t cure it, but in a way at least allow people, give them some hope, if that’s what we’re talking about.” [HIV positive female, 35].

HIV treatment providers also need to find ways of coping with the anxieties of failed treatment expectation whilst recognising that it is people living with HIV who absorb most of the fallout of lost treatment opportunity (“They [patients] lose control. They are anxious about it. Their fears about the future rise. It’s very difficult to think about how they manage their lives”). We have found some participants’ experience of treatment shortages have undermined their trust in the benefits of ART (“They don’t believe in this therapy after that [treatment shortage]”). Some people living with HIV decided to stop or not begin ART because they perceived it to be “more risks than things to gain”.

Participants attributed HIV treatment interruptions in part to the socioeconomic conditions of their environment. They perceived this to restrict their expectation for secure and continuous delivery in the future. Some rationed their hope as a way to manage the risks associated with failed treatment opportunities (“How can I be disappointed if it wasn’t something I expected?”). Crucially, this environment in which people perceived there to be limited hope also acted to undermine motivation to participate in community advocacy to improve treatment opportunities.

This brief case study of the experience of treatment delivery illustrates the role of hope in mediating risk and outcome. It also demonstrates the negative fallout from an intervention which fails to deliver on their promises. Such treatment ethnography is as significant in Serbia or Montenegro as it relates to shortages in medical and equipment supply and associated forms of ‘treatment rationing’ through enforced regime change and ‘drug holidays’,[33] as it is in relation to the vast numbers of eligible people living with HIV awaiting treatment, be this linked to slow treatment roll out as in South Africa [30] or ‘capped’ treatment access as in Togo [37].

11 Conclusion Social environments are regulators of risk and hope. One feature of risk environments is that they do not engender hope or encourage long term planning or decision making. Absence of hope and lack of investment in the future – discounting of the future – may foster vulnerability to health harm by weakening self and community regulation of risks, including in relation to HIV. While global initiatives to scale-up access to HIV treatment offer a discourse of hope, treatment inconsistency and uncertainty are likely to be common characteristics of long-term free access to treatment in many settings.[32] Hope generated by discourses of HIV treatment promise inversely introduces fallout in which the fragility of dependency and fear of disappointment can reproduce a pervasive sense of risk or insecurity for individuals living with HIV. Treatment without appropriate psychological and social support exposes individuals to the full blast of health system weaknesses.

It is important to reflect upon the potential social consequences, some unforeseen and adverse, of HIV behavioural and medical intervention. First, we must recognise that without hope behaviour is harder to change and long-term treatment harder to achieve. Second, we need to appreciate how hope relates to structural conditions such as relative social position, political stability, gender inequality and system operations. Third, we need to develop prevention and treatment interventions to prevent as well as reduce the human costs of the potential fallout resulting from loss of hope, including the provision of social support and contingency or emergency treatment in times of disruption. Lastly, we need a longer term vision in developing and researching interventions which enable environments which can shape and sustain hope through HIV prevention and HIV treatment engagement. Hope is an under researched concept in relation to HIV prevention and treatment. It is a variable which focuses on the condenser effect of socio-economic environments onto individual behaviours and is thus a core feature of the degree to which risk environments enable or disenable sustained consistent HIV treatment and behaviour change.

12 References

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