Constructing AIDS: Contesting perspectives on an evolving epidemic Jerker Edström, IDS STEPS Epidemics Workshop, Dec 2008

Introduction These are subjective reflections from a ‘practice of engagement’ with many types of stakeholders, over 20 years Primarily concerned with the question of ‘what to do?’ I saw the relative centre of gravity in debates gradually shift – in very broad brush strokes – from: viral transmission , behaviour and primary prevention in the late 80s and 90s, to; disease progression, management and treatment from the late 90s to mid 00s and to; impact mitigation and what to do with those affected – esp. children – from the beginning of the millennium to the present. Ask how different interest groups, actors and disciplines have tended to co-construct narratives and often using the issue as a convenient peg for broader concerns.

These are subjective reflections from a ‘practice of engagement’ with many types of stakeholders, over 20 years

Primarily concerned with the question of ‘what to do?’ I saw the relative centre of gravity in debates gradually shift – in very broad brush strokes – from:

viral transmission , behaviour and primary prevention in the late 80s and 90s, to;

disease progression, management and treatment from the late 90s to mid 00s and to;

impact mitigation and what to do with those affected – esp. children – from the beginning of the millennium to the present.

Ask how different interest groups, actors and disciplines have tended to co-construct narratives and often using the issue as a convenient peg for broader concerns.

What’s the problem? Placing bets on the four horsemen In critical periods of transition, societies often experience radical shifts in perception and practice as a result of severe shocks or crises in: Nature of crisis Problem frame Domain health (epidemics, or ‘plagues’), Risk Public Health hunger (or famines), Vulnerability Devt./economics violence and conflict (or wars) Threat Security governance (corruption/impunity) Injustice Human Rights

In critical periods of transition, societies often experience radical shifts in perception and practice as a result of severe shocks or crises in:

Nature of crisis Problem frame Domain

health (epidemics, or ‘plagues’), Risk Public Health

hunger (or famines), Vulnerability Devt./economics

violence and conflict (or wars) Threat Security

governance (corruption/impunity) Injustice Human Rights

Individuals ‘ Collectives’

Unity /order Diversity /uncertainty Individuals ‘ Collectives’

Risky individuals, risk behaviour and labels In the first decade – HIV predominantly construed within a preventive health framework, and (based on epidemiology) focussing on transmission risk , ‘risk factors’ and individuals as ‘vectors’ of infection Early construction on risk groups in the US were “the Hs” – Homosexuals, Hookers, Haitians, Heroin addicts and Haemophiliacs. Resulting controversies shifted the predominant problem analysis onto ‘risk behaviour’, with several interesting results. One was a ‘consensus’ between progressive public health experts and sexual and human rights activists that ‘supply reduction’ – criminalising people at risk, or restricting their mobility – was not likely to be effective. Another outcome of was that of ‘re-labelling’, or defining putative ‘population groups’ on the basis of a risk behaviour; ‘MSM’, ‘Sex worker’ or ‘IDU’ Whilst we have ended up creating new names and labels as proxies for groups of individuals, this has been positive for developing more effective solutions to ‘ harm reduction ’.

In the first decade – HIV predominantly construed within a preventive health framework, and (based on epidemiology) focussing on transmission risk , ‘risk factors’ and individuals as ‘vectors’ of infection

Early construction on risk groups in the US were “the Hs” – Homosexuals, Hookers, Haitians, Heroin addicts and Haemophiliacs.

Resulting controversies shifted the predominant problem analysis onto ‘risk behaviour’, with several interesting results.

One was a ‘consensus’ between progressive public health experts and sexual and human rights activists that ‘supply reduction’ – criminalising people at risk, or restricting their mobility – was not likely to be effective.

Another outcome of was that of ‘re-labelling’, or defining putative ‘population groups’ on the basis of a risk behaviour; ‘MSM’, ‘Sex worker’ or ‘IDU’

Whilst we have ended up creating new names and labels as proxies for groups of individuals, this has been positive for developing more effective solutions to ‘ harm reduction ’.

Another outcome of the shift to behaviour was a move towards broader-based health promotion with information, education and communications (IEC) strategies aimed to ‘reduce demand’ for unsafe practices. Underlying these approaches were abstract general models predicated on a rational choice theory of behaviour. Most campaigns failed to show any impacts on behaviour for lots of different reasons. To the extent that there is any good evidence for the impact of education, consistently providing young people with a broad range of information has showed signs of working whereas teaching based on abstinence has not. Education, for behaviour change also overlaps with harm reduction with MSM, sex workers or IDU - also require some (smaller) behavioural adaptations – and has been shown to be more effective. Positive trajectory  taking real transmission risks seriously and finding more acceptable ways of engaging those most relevant to transmission Negative trajectory  shift towards broader health promotion in general populations was overlooking the reality of specific individuals’ contexts

Another outcome of the shift to behaviour was a move towards broader-based health promotion with information, education and communications (IEC) strategies aimed to ‘reduce demand’ for unsafe practices.

Underlying these approaches were abstract general models predicated on a rational choice theory of behaviour. Most campaigns failed to show any impacts on behaviour for lots of different reasons.

To the extent that there is any good evidence for the impact of education, consistently providing young people with a broad range of information has showed signs of working whereas teaching based on abstinence has not.

Education, for behaviour change also overlaps with harm reduction with MSM, sex workers or IDU - also require some (smaller) behavioural adaptations – and has been shown to be more effective.

Positive trajectory  taking real transmission risks seriously and finding more acceptable ways of engaging those most relevant to transmission

Negative trajectory  shift towards broader health promotion in general populations was overlooking the reality of specific individuals’ contexts

The shift to Vulnerability: Sensitivity to context or an excuse for bold projections and over-generalisations? In the 90s, as the spread of HIV was becoming more recognised Globally a set of less explicit development constructs and ideologies relating to vulnerability were applied to analysing AIDS Participatory community assessment and project design on HIV prevention and sexual health, became a popular methodology, using structural, or contextual, analyses carried out by, or with, local groups These approaches were criticised for lacking epidemiological rigour and that the emphasis on vulnerability led to focusing on fundamental and immovable development ‘obstacles’ too difficult to shift, or in any case not most relevant to transmission dynamics. Important lesson  ‘communities’ were not necessarily going to take you to their most relevant – and often most stigmatised – members, or steer the analysis towards solutions which would empower ‘those people’. One route of progress from this conceptual conflict was focusing on the direct engagement of ‘ key populations ’ – defined as those who were (i) most vulnerable to contracting the virus and (ii) most likely to pass it on, but also (iii) most key to the response – i.e. with a potential to mobilise and build up social capital.

In the 90s, as the spread of HIV was becoming more recognised Globally a set of less explicit development constructs and ideologies relating to vulnerability were applied to analysing AIDS

Participatory community assessment and project design on HIV prevention and sexual health, became a popular methodology, using structural, or contextual, analyses carried out by, or with, local groups

These approaches were criticised for lacking epidemiological rigour and that the emphasis on vulnerability led to focusing on fundamental and immovable development ‘obstacles’ too difficult to shift, or in any case not most relevant to transmission dynamics.

Important lesson  ‘communities’ were not necessarily going to take you to their most relevant – and often most stigmatised – members, or steer the analysis towards solutions which would empower ‘those people’.

One route of progress from this conceptual conflict was focusing on the direct engagement of ‘ key populations ’ – defined as those who were (i) most vulnerable to contracting the virus and (ii) most likely to pass it on, but also (iii) most key to the response – i.e. with a potential to mobilise and build up social capital.

In Sub-Saharan Africa, the debates have taken quite a different trajectory, remaining more firmly entrenched in development discourse. Relatively early projections about impacts of the spread of HIV were both alarming and suggestive: E.g. the UNDP ‘waves of the unfolding epidemic’, saw AIDS as a shock to systems with increasingly aggregate effects. These, or Paul Farmer’s contexts of ‘ structural violence’ , provided inspiration to several over-generalisations about poverty and women’s disempowerment as the root-causes of AIDS. The long-lived notion that “poverty and underdevelopment drives the epidemic” and has been shown incorrect. It is more about inequality and rapid development , than about absolute poverty. The claim of women’s greater vulnerability to HIV, or a supposed ‘feminisation of the epidemic’ are other typically over-simplified areas. Since the mid 1990s, the global gender ratio amongst HIV positive people has remained at 1:1 and constant even in Africa, if at almost 60% women. Despite typical gender-scripts of transmission, data shows that extramarital sexual activity among women cohabiting with male spouses may be as substantial a source of vulnerability to HIV as is male infidelity in Africa.

In Sub-Saharan Africa, the debates have taken quite a different trajectory, remaining more firmly entrenched in development discourse.

Relatively early projections about impacts of the spread of HIV were both alarming and suggestive: E.g. the UNDP ‘waves of the unfolding epidemic’, saw AIDS as a shock to systems with increasingly aggregate effects.

These, or Paul Farmer’s contexts of ‘ structural violence’ , provided inspiration to several over-generalisations about poverty and women’s disempowerment as the root-causes of AIDS.

The long-lived notion that “poverty and underdevelopment drives the epidemic” and has been shown incorrect. It is more about inequality and rapid development , than about absolute poverty.

The claim of women’s greater vulnerability to HIV, or a supposed ‘feminisation of the epidemic’ are other typically over-simplified areas.

Since the mid 1990s, the global gender ratio amongst HIV positive people has remained at 1:1 and constant even in Africa, if at almost 60% women.

Despite typical gender-scripts of transmission, data shows that extramarital sexual activity among women cohabiting with male spouses may be as substantial a source of vulnerability to HIV as is male infidelity in Africa.

The fact that it is hard to generalise does not imply that gender inequities don’t matter – they clearly do – but how they translate into specific transmission risks is highly context specific. Development narratives continue to treat sex for sale in Africa in culturally exceptional terms, whereas shifting demographics, mobility, urbanisation and the decline of marriage unions, along with Christianisation, seems to go with increased bartering sex for regular income. It is not that ‘sex work’ doesn’t matter here – it’s that it is so diverse and expansive. Nevertheless, some benefits in a development approach focusing on vulnerability and context were its appealing to empowerment and participation, attention to structural determinants has sometimes allowed for better defining the reality of social and economic limits and potentials for intervention and change. Participatory methods can be combined with a better focus on priority groups and they can be powerful in identifying the people and contexts which really matter, as well as which solutions are likely to work.

The fact that it is hard to generalise does not imply that gender inequities don’t matter – they clearly do – but how they translate into specific transmission risks is highly context specific.

Development narratives continue to treat sex for sale in Africa in culturally exceptional terms, whereas shifting demographics, mobility, urbanisation and the decline of marriage unions, along with Christianisation, seems to go with increased bartering sex for regular income.

It is not that ‘sex work’ doesn’t matter here – it’s that it is so diverse and expansive.

Nevertheless, some benefits in a development approach focusing on vulnerability and context were its appealing to empowerment and participation, attention to structural determinants has sometimes allowed for better defining the reality of social and economic limits and potentials for intervention and change.

Participatory methods can be combined with a better focus on priority groups and they can be powerful in identifying the people and contexts which really matter, as well as which solutions are likely to work.

Deeper problems with vulnerability for understanding an epidemic Most definitions and theoretical constructions of vulnerability have tended to rely on passive notions of vulnerability as well as reduce it to linear and suggestively deterministic models. Key problems in applications of development notions of vulnerability to HIV were: the fact that the concept is complex and unevenly understood; limiting the focus to impacts of shocks on passive victims; where applied to analysing structural influences on transmission is has tended to lead to appeals to overly broad-based inequalities; which, in turn, has led to speculative projections of poverty impacts and unsubstantiated myths about broad structural drivers. even where resilience is invoked the concept is not sufficient for the agency involved Vulnerability has turned out epidemiologically confounding, sometimes confusing vulnerability with transmission risks, which are both relational but in different ways. If [Risk = Threat + Vulnerability], the structural drivers of the threat may be more important…

Most definitions and theoretical constructions of vulnerability have tended to rely on passive notions of vulnerability as well as reduce it to linear and suggestively deterministic models.

Key problems in applications of development notions of vulnerability to HIV were:

the fact that the concept is complex and unevenly understood;

limiting the focus to impacts of shocks on passive victims;

where applied to analysing structural influences on transmission is has tended to lead to appeals to overly broad-based inequalities;

which, in turn, has led to speculative projections of poverty impacts and unsubstantiated myths about broad structural drivers.

even where resilience is invoked the concept is not sufficient for the agency involved

Vulnerability has turned out epidemiologically confounding, sometimes confusing vulnerability with transmission risks, which are both relational but in different ways.

If [Risk = Threat + Vulnerability], the structural drivers of the threat may be more important…

The appeal to rights and HIV related citizens Many of the above frameworks and models were developed in an era when treatment for HIV was not yet available or broadly thought by policy makers to be out of reach for HIV positive people in ‘the South’. With the development of Highly Active Antiretroviral Treatment (HAART), the view of HIV began to shift towards more of a manageable chronic illness and access to treatment a matter of rights . Activism from HIV positive groups, in strategic alliances with civil society networks and policy makers helped bring down the price of Antiretroviral (ARV) drugs and consolidated commitments to massively expanding and rolling out treatment in the South. However, the attention to care and support of people infected started well before treatment came within reach, with NGOs, governments and FBOs developing models for home and community based care and drop-in centres for care and peer-support. This was of course part and parcel of this broader (and global) mobilisation for care and treatment. Solidarity and peer-support were key in shaping new identities and a therapeutically defined sense of purpose.

Many of the above frameworks and models were developed in an era when treatment for HIV was not yet available or broadly thought by policy makers to be out of reach for HIV positive people in ‘the South’.

With the development of Highly Active Antiretroviral Treatment (HAART), the view of HIV began to shift towards more of a manageable chronic illness and access to treatment a matter of rights .

Activism from HIV positive groups, in strategic alliances with civil society networks and policy makers helped bring down the price of Antiretroviral (ARV) drugs and consolidated commitments to massively expanding and rolling out treatment in the South.

However, the attention to care and support of people infected started well before treatment came within reach, with NGOs, governments and FBOs developing models for home and community based care and drop-in centres for care and peer-support.

This was of course part and parcel of this broader (and global) mobilisation for care and treatment. Solidarity and peer-support were key in shaping new identities and a therapeutically defined sense of purpose.

A shift from ‘bio-sociality’ to ‘bio-politics’ in accounts of ‘therapeutic citizenship’, which has become a key concept in the study of citizenship in relation to HIV (Nguyen, 2002). With these moves for rights to treatment have also come debates on responsibilities, and with ‘normalisation’ of HIV as a chronic illness, questions have also been raised over the extent to which treatment may in fact have domesticated and dampened activism (Robins, 2006). Despite some possible recent over-romanticism about PLHA activism and therapeutic citizenship, it has indeed been central to effective responses. It is also essential to recognise, however, that overlapping HIV-related subject positions have been co-constructed in interaction with the global AIDS response, through alliances between individuals and groups of differently identified and self-identified categories (SW, MSM, PLHA etc.). We need to see HIV-related citizenship in more diverse actor-oriented terms of engagement and emergent solidarities contesting access to scientific evidence and resources.

A shift from ‘bio-sociality’ to ‘bio-politics’ in accounts of ‘therapeutic citizenship’, which has become a key concept in the study of citizenship in relation to HIV (Nguyen, 2002).

With these moves for rights to treatment have also come debates on responsibilities, and with ‘normalisation’ of HIV as a chronic illness, questions have also been raised over the extent to which treatment may in fact have domesticated and dampened activism (Robins, 2006).

Despite some possible recent over-romanticism about PLHA activism and therapeutic citizenship, it has indeed been central to effective responses.

It is also essential to recognise, however, that overlapping HIV-related subject positions have been co-constructed in interaction with the global AIDS response, through alliances between individuals and groups of differently identified and self-identified categories (SW, MSM, PLHA etc.).

We need to see HIV-related citizenship in more diverse actor-oriented terms of engagement and emergent solidarities contesting access to scientific evidence and resources.

Threats and security – the power of fear and the lure of the loot The fourth angle of threat has existed throughout the history of this epidemic and was the obvious initial predominant reaction to the new virus. It has typically been constructed as an outside(r) threat in early periods (e.g. from Haitians in New York, from peace-keepers in Cambodia, etc.). It has also been associated with conflict and gender-based violence. Inconveniently, of course, ‘risks’ only arise – and vulnerability only exists – in the face of an external ‘threat’. In terms of transmission and vulnerability to HIV, that is a threat brought by some body else. Risk = Threat + Vulnerability However, this threat related to HIV is usually not visible, which itself feeds fear and stigma, as particular groups get labelled by proxy. Force, virulence and vulnerability all matter, as does the differential transmission along different pathways in social networks (even in a high-prevalence setting).

The fourth angle of threat has existed throughout the history of this epidemic and was the obvious initial predominant reaction to the new virus.

It has typically been constructed as an outside(r) threat in early periods (e.g. from Haitians in New York, from peace-keepers in Cambodia, etc.). It has also been associated with conflict and gender-based violence.

Inconveniently, of course, ‘risks’ only arise – and vulnerability only exists – in the face of an external ‘threat’. In terms of transmission and vulnerability to HIV, that is a threat brought by some body else.

Risk = Threat + Vulnerability

However, this threat related to HIV is usually not visible, which itself feeds fear and stigma, as particular groups get labelled by proxy.

Force, virulence and vulnerability all matter, as does the differential transmission along different pathways in social networks (even in a high-prevalence setting).

General grand statements like ‘conflict drives the HIV epidemic’ often go unchallenged, whilst they often fail to provide any credible epidemiological evidence. In fact, there is little correlation between contexts of active violent conflict and HIV prevalence. Certain types of terror in war (e.g. rape as a weapon), or sexual violence in relationships do increase the chances of new infections, but; (a) it is not always as significant epidemiologically as it is often made out to be and (b) their analysis is often not improved by making it primarily an HIV issue (i.e. abuse, rape and pillage pose problems for other reasons, such as injustice…). The threat of conflict has also been construed as a potential and eventual outcome of HIV, but we have yet not seen any government fall to AIDS. In fact, deWaal suggest that the resources and infrastructure mobilised under governments in the response to AIDS may have strengthened the hand of some governments (2007).

General grand statements like ‘conflict drives the HIV epidemic’ often go unchallenged, whilst they often fail to provide any credible epidemiological evidence. In fact, there is little correlation between contexts of active violent conflict and HIV prevalence.

Certain types of terror in war (e.g. rape as a weapon), or sexual violence in relationships do increase the chances of new infections, but;

(a) it is not always as significant epidemiologically as it is often made out to be and

(b) their analysis is often not improved by making it primarily an HIV issue

(i.e. abuse, rape and pillage pose problems for other reasons, such as injustice…).

The threat of conflict has also been construed as a potential and eventual outcome of HIV, but we have yet not seen any government fall to AIDS.

In fact, deWaal suggest that the resources and infrastructure mobilised under governments in the response to AIDS may have strengthened the hand of some governments (2007).

How so many resources were mobilised in aid of ‘the fight against AIDS’ is in itself fundamentally an issue of perceived ‘threat’ on a global level, but particularly at a national level in the primary superpower on the globe. Projections about a spread of generalised epidemics to significant large countries like Nigeria, India and China from the CIA allowed President Clinton to declare AIDS an issue of National Security  boosted momentum for the GFATM and PEPFAR. These projections were highly speculative in epidemiological terms, but it would not be the first or last time speculative US intelligence information have led to major international developments with global consequences. The fact that several diseases were included in the GFATM is not merely a compromise or a rational agreement on relative priorities: It also reflects a deeper fear – on health grounds – of a threat of different epidemics operating together  e.g. HIV and drug resistant tuberculosis (MDR and XDR TB). Whilst human rights have proved essential to engaging affected groups in responding to HIV, what of rights when the vulnerable becomes the vector for new and more transmissible pathogens?

How so many resources were mobilised in aid of ‘the fight against AIDS’ is in itself fundamentally an issue of perceived ‘threat’ on a global level, but particularly at a national level in the primary superpower on the globe.

Projections about a spread of generalised epidemics to significant large countries like Nigeria, India and China from the CIA allowed President Clinton to declare AIDS an issue of National Security

 boosted momentum for the GFATM and PEPFAR.

These projections were highly speculative in epidemiological terms, but it would not be the first or last time speculative US intelligence information have led to major international developments with global consequences.

The fact that several diseases were included in the GFATM is not merely a compromise or a rational agreement on relative priorities: It also reflects a deeper fear – on health grounds – of a threat of different epidemics operating together

 e.g. HIV and drug resistant tuberculosis (MDR and XDR TB).

Whilst human rights have proved essential to engaging affected groups in responding to HIV, what of rights when the vulnerable becomes the vector for new and more transmissible pathogens?

Conclusions I suspect AIDS has been one of the most contested epidemics of our times. In bringing out differences of subject positionalities, interests and power-relations, AIDS has challenged many simple notions and reductive explanations of what has turned out to be a highly complex ‘ecology’ of bio-social, economic and political dynamic forces. With an increasingly Global and unequal World HIV looks set to remain rooted and continue to evolve in unexpected ways. Old fashioned public health responses proved largely inappropriate and ineffective in the early days, which taught us the importance of attention to human rights in developing responses. Development framings and predictions often got us muddled and took our gaze of following the virus, whilst it also taught us to use more imagination and social awareness in attention to context.

I suspect AIDS has been one of the most contested epidemics of our times.

In bringing out differences of subject positionalities, interests and power-relations, AIDS has challenged many simple notions and reductive explanations of what has turned out to be a highly complex ‘ecology’ of bio-social, economic and political dynamic forces.

With an increasingly Global and unequal World HIV looks set to remain rooted and continue to evolve in unexpected ways.

Old fashioned public health responses proved largely inappropriate and ineffective in the early days, which taught us the importance of attention to human rights in developing responses.

Development framings and predictions often got us muddled and took our gaze of following the virus, whilst it also taught us to use more imagination and social awareness in attention to context.

Like other major epidemics, HIV quickly demonstrated a capacity to generate both deep fear and denial of those affected. It thrives in contexts of rapid growth, urbanisation, socio-cultural change and inequality. Reactions and sensitivities connected and surrounding issues of inequality, race and morality has compromised our capacity to rapidly track the virus and respond with effective and strategic solutions. We should be very wary of over-relying on general (often fuzzy) notions of vulnerability as the key determinant in epidemic spread, which may be a useful caution for other epidemics of infectious diseases. Similarities with other epidemics

Like other major epidemics, HIV quickly demonstrated a capacity to generate both deep fear and denial of those affected.

It thrives in contexts of rapid growth, urbanisation, socio-cultural change and inequality.

Reactions and sensitivities connected and surrounding issues of inequality, race and morality has compromised our capacity to rapidly track the virus and respond with effective and strategic solutions.

We should be very wary of over-relying on general (often fuzzy) notions of vulnerability as the key determinant in epidemic spread, which may be a useful caution for other epidemics of infectious diseases.

Differences The differences between HIV and other epidemics are most importantly related to characteristics of the disease or pathogen. HIV’s slow and selective progress, combined with invisibility and association with particular stigmatised behaviours generates some of it’s particular traits. It may also be one of the most contested and politicised epidemics in terms of how it has been constructed, explained and dealt with. Unlike many other past epidemics, affected groups and civil society (more broadly) have mobilised globally – and locally – and created change on a previously unseen scale (This may be harder in epidemics of more transmissible pathogens). With globalisation and increasing connectivity, there may be precedents in this which will shape how certain future epidemics get received.

The differences between HIV and other epidemics are most importantly related to characteristics of the disease or pathogen.

HIV’s slow and selective progress, combined with invisibility and association with particular stigmatised behaviours generates some of it’s particular traits.

It may also be one of the most contested and politicised epidemics in terms of how it has been constructed, explained and dealt with.

Unlike many other past epidemics, affected groups and civil society (more broadly) have mobilised globally – and locally – and created change on a previously unseen scale (This may be harder in epidemics of more transmissible pathogens).

With globalisation and increasing connectivity, there may be precedents in this which will shape how certain future epidemics get received.