Between Individual Agency and Structure in HIV Prevention: Understanding the Middle Ground of Social Practice

Abstract

When HIV prevention targets risk and vulnerability, it focuses on individual agency and social structures, ignoring the centrality of community in effective HIV prevention. The neoliberal concept of risk assumes individuals are rational agents who act on information provided to them regarding HIV transmission. This individualistic framework does not recognize the communities in which people act and connect. The concept of vulnerability on the other hand acknowledges the social world, but mainly as social barriers that make it difficult for individuals to act. Neither approach to HIV prevention offers understanding of community practices or collective agency, both central to success in HIV prevention to date. Drawing on examples of the social transformation achieved by community action in Australia and Brazil, this article focuses on this middle ground and its role in effective HIV prevention.

In 2012, the Joint United Nations Programme on HIV/AIDS (UNAIDS) released a report in conjunction with the International AIDS Conference in Washington, entitled “Together We Will End AIDS,” which included a section entitled “Transforming Societies.”¹ At the beginning of this section, communities are placed center stage:

When affected communities help to plan and implement HIV initiatives, the demand for better and more equitable services increases, awareness of societal barriers and harmful gender norms is raised, governments are held accountable for meeting the needs of citizens and services and outcomes improve. This leads to broader social transformation, which is paramount to halt and reverse the HIV epidemic.^1(p58)

A few pages later, Wilson places community at the heart of an effective response, asserting that “nothing has ever happened in HIV that was not driven by the communities most impacted.”^1(p61) Later in the report, the importance of collectives and groups is again made explicit with reference to young people: “Young people have a unique role in reaching out to their peers, particularly in key populations at higher risk of HIV such as young people who inject drugs.”^1(p79)

Although community has always played a part in HIV prevention, this explicit UNAIDS attention is welcome because it shifts attention away from an earlier almost exclusive focus on risk behaviors and vulnerable populations. It places socially related individuals that make up these communities center stage and in a manner that highlights agency, and more importantly, as we demonstrate, collective agency.

Not all vulnerable populations perceive themselves as distinct communities based on the behaviors that place them and their members at risk for HIV. Nevertheless, the members of these populations all inhabit social worlds that mediate, in profound ways, their ability to confront HIV and AIDS. Heterosexual men and women, gay men, injection drug users, and sex workers are all at greater or lesser risk and more or less vulnerable depending on a host of sociocultural, political, and economic factors. These same people, as members of communities, groups, organizations, or collectives, are those who have acted to protect themselves and others from HIV and AIDS by transforming their own sexual and drug injection practices.

Findings from studies around the world have documented declines in HIV transmission, and many of these studies have identified the role of communities, networks, and groups—both those infected with HIV and those affected either directly or indirectly by HIV—as one of the key factors related to the declines. Such evidence is provided for Africa from Uganda,² Zimbabwe,^2–4 Malawi,⁵ and South Africa.⁶ It also has come from several countries, including Brazil and Thailand,^7–9 and from cities such as New York City; Rotterdam, the Netherlands; and Buenos Aires, Argentina and sites in Central Asia.¹⁰ Many of these studies provide rich and detailed accounts of the social and political processes involved in the collective shifts in social practices that preceded declining HIV incidence, and the role of sexual communities, kinship networks, and drug using groups in achieving these outcomes. Although the evidence for effectiveness is not conclusive (and effectiveness cannot be assessed the same way as efficacy using randomized controlled trials or other forms of experimental control),¹¹ evidence is available. Such evidence, framed as a series of steps from HIV prevalence to national policies via measures of HIV incidence, changes in behavior, and HIV prevention programs,¹² indicates more or less what has worked in particular settings at particular times. It is clear that collectives, whether they are communities, networks, or groups, are central in terms of advocating, initiating, and implementing change. However, what is not clearly stated is how communities become transformative in their practices.

Following Adam’s analysis¹³ of the ways in which the epistemological framework, which is characteristic of biomedical individualism, bypasses the social, we aim to show how the predominant ways of framing discussion of HIV prevention, in terms of risk or vulnerability, have occluded attempts to understand how social transformation occurs. We also examine how the concept of “social drivers” attempts to offer the conceptual tools for engaging with community responses to HIV. Although such framing does not quite fulfill its promise, it points toward a potentially productive way of understanding social transformation and change. We examine the centrality of collective agency and social practice in social transformation, drawing on examples of shifts in practice in 2 contrasting countries, Australia and Brazil. These cases demonstrate public health’s capacity to engage with collective agency when it takes as its starting point neither risk nor vulnerability, but the collective agency of communities whose HIV prevention efforts are shaped by the specificities of what they value.

RISK

The notion of risk drove much early HIV prevention research and remains an important analytical device. The majority of HIV prevention efforts have been focused on the risk behaviors of individuals constituting populations at risk (e.g., unprotected sexual intercourse, sharing of injecting equipment). Such efforts have focused on modifying the risk behaviors of individuals, where individuals are typically considered neoliberal rational agents, who should and would change their behavior if they were given information about the risk of HIV transmission, how to prevent it, and had access to HIV-prevention tools, such as condoms and sterile needles and syringes. From this perspective, individuals engaging in risk behavior are either uninformed or ill-informed, are subject to outside pressure, or are behaving irrationally.¹⁴

The theories underpinning HIV prevention that focus on risk are largely derived from psychological models, in which the rational self-efficacious individual is center stage, and behavior change is understood to be a function of an individual’s attitudes, beliefs, and subjective social norms.^15–17 These models have an affinity with biomedical understandings, in that biomedicine and psychology both share individualistic paradigms. Furthermore, as is common in public health, this approach sees HIV prevention as a matter for experts who counsel, inform, and advise populations in the form of clients and patients. It typically focuses on which technologies are most likely to bring about a reduction in HIV transmission and how best to target individuals so they adopt these technologies and change their behavior. Although sex education and social marketing have been used, as well as counseling and testing to inform and to advise, the focus has been almost exclusively on safety and the reduction of risk of disease transmission rather than also on pleasure and rights—except in some instances, for example, peer education. Recognizing that sexuality is a variant assemblage of practices and perceptions, and putting sexuality into HIV prevention, is central to successful HIV prevention.¹⁸

How individuals act, whether they smoke, eat, and exercise well, use condoms or ensure safe injecting, is, of course, the central concern to all engaged in promoting health, including those promoting HIV prevention. However a risk-focused view of prevention has a number of problems; in particular, as has been argued for a couple of decades, the individualistic paradigm in which it is situated is problematic for several reasons.¹⁹

First, behavior, which is fundamentally individualistic, positions persons as rational agents of change, and misses the point that people’s actions are not simply the end product of individual characteristics.²⁰ What is described as behavior is always itself social, imbued with meaning, rich in significance, and the outcome of a variety of forces.^21,22 Second, the term behavior evokes a relatively static interchangeable measureable act, but what might look like similar actions to an outsider (e.g. unprotected sexual intercourse) can carry a number of different meanings and can be substantively different across time, place, occasion, actor, etc. (e.g., unprotected intercourse between HIV positive gay partners who know and have discussed their HIV status is very different from unprotected sex between married heterosexuals who are unaware of their own and their spouse’s HIV status). Third, people do not engage in static abstracted behaviors such as sexual intercourse. Rather, as has been argued elsewhere, people engage in social practices: they make love, have an affair, engage in a hook up, and so on.^23,24 The norms regulating social practices such as making love enable people to act by specifying its constituents, telling one how and what is expected in a particular cultural context. Similarly, safe sex is enabled by technological objects, expertise, and the social norms regulating safe sexual practice.²⁵

Taking sexual practice as an example, it follows that it is important for public health practitioners to engage with notions of intimacy, desire, love, lust, pleasure, and with cultural forms in which sexual practice is embedded.²⁶ Marriage, polygamy, transactional sex, casual sex, and sexual adventurism are all framed by shared and contested social rules and norms. Within the individual risk paradigm, there is little understanding of sexual practice or drug use as cultural forms, and there is little if any attempt to understand how social practice acts as a foundation for prevention, rather than risk.²⁷ The collective or group, and associated notions of norms, practices, and cultural meanings are absent, and HIV prevention tends to take a vertical or top-down form—from the expert to the individual patient or client. Much like the “banking” theory of pedagogy critiqued years ago by Freire,^28,29 individualized approaches to behavior change position subjects as though they were objects. These approaches seek to fill up individuals’ deficit bank accounts with knowledge about HIV-related risk, but offer little or nothing by way of critical tools that might stimulate collective agency and contribute to broader community-based responses to the epidemic.³⁰

VULNERABILITY

Nearly 2 decades ago, HIV and AIDS research began to acknowledge and design programs to address the inadequacies of HIV prevention efforts that target risk behaviors undertaken by individuals positioned as rational, autonomous agents. Effectively, the traditional object of HIV intervention, individual risk behavior, was supplemented with a new object, vulnerability.^31,32 By the end of the 1990s, this approach had largely been adopted by UNAIDS and the World Health Organization. The 2000 World AIDS Report, for example, marked a watershed moment in highlighting this problem:

Individuals do not live and make decisions in a vacuum. After years of focusing on personal choices about lifestyles, by the early 1990s AIDS prevention programmes were giving renewed attention to the social and economic context of people’s daily lives… . Recognition of the factors that fuel the HIV epidemic prompted the development of new programmes for reducing vulnerability – in the civil, political, economic, social and cultural arenas – that would work in synergy with the more traditional prevention approaches aimed at diminishing risk-taking behaviour.^33(p37)

Since 2000, the problem of vulnerability, understood as produced by social and economic structures and forces, has increasingly shaped efforts to address HIV transmission in concert with efforts addressing risk-taking behaviors. In the 2011 UNAIDS Terminology Guidelines, for example, vulnerability is described as follows:

Vulnerability refers to unequal opportunities, social exclusion, unemployment, or precarious employment and other social, cultural, political, and economic factors that make a person more susceptible to HIV infection and to developing AIDS. The factors underlying vulnerability may reduce the ability of individuals and communities to avoid HIV risk and may be outside the control of individuals.^34(p30) (emphasis added)

This move acknowledges that inequalities (gender, economic, racial, legal, and social) play a central role not only in the manner in which HIV is transmitted but also in the ways in which populations can respond to HIV. It also acknowledges the importance of advocacy and addressing such inequalities through national government actions and local initiatives, including community-based organizing and advocacy. Nonetheless, there are a number of problems with the conceptualization of vulnerability, not the least of which (in the 2011 UNAIDS definition) is the fact that it downplays human agency and positions structural factors as outside the everyday lives of men and women.

In particular, vulnerability invokes a false dualism between people and the societies they inhabit and produce. The dominant notion of the social implied by most attempts to conceptualize vulnerability in the context of HIV prevention is a social structure or social barrier. The individuals who constitute vulnerable populations are positioned as separate from the social, and although their actions and behaviors are acted on and driven by the social, they are unable to act upon it. Beyond this, vulnerability is understood as an attribute of populations of similar individuals (female, poor, and so on), but the individual members of these populations are not understood as connected one to another in any way other than by way of an overarching vulnerability. The concept of social relations is absent or is extremely difficult to capture and target without lapsing into notions of the social as a barrier. We discuss this problem in relation to social drivers, providing a more nuanced approach to vulnerability (see the Social Drivers or Social Enablers section). Finally, there is no understanding of collective agency that arises out of social relations or any acknowledgment of the practices of collectives or communities.³⁵ Instead, both individuals and groups are usually presented as constrained and inhibited, in line with the deficit model that vulnerability theory so often justifies.

In the absence of any investigation of the social relations that connect people to each other, attributes of a population are mistakenly collapsed with attributes of people within that population.³⁶ Thus, the notion of vulnerability renders the individual members of vulnerable populations incapable of action; there is little recognition or understanding of what connects people to each other, and what forms the stuff of their social and cultural lives. Furthermore, although the move to vulnerability originates as a move to extend beyond the idea of individual behavior, the notion of an individual is not completely absent. The benefits of addressing vulnerability are described in a way that augments the same subject: the rational, individual agent of liberal and neoliberal societies is upheld as the dominant mode of being. Thus, criticisms of assumptions about the limits of the autonomous subject, who is invoked when behavior is the main object of research or intervention, are reinterpreted (and misinterpreted) to mean if only the social and political conditions were right, we would all be in a position to have our behavior targeted by well-designed health interventions, and we would all act rationally and take up the technologies promoted.³⁷

This embracing of vulnerability often has the unintended consequence of making agency disappear, almost by definition, because vulnerability assumes that people cannot act until the social is changed. Thus, this approach does not promote what it often sets out to do (i.e., grass-roots HIV prevention efforts), because such efforts begin with social relations. Instead, by approaching the social in the form of problematic social structures or barriers, framing HIV prevention as a matter of vulnerability once again risks inviting vertical or top-down attempts to tackle the social. Instead of stimulating resistance in the face of structural violence,^38–41 it may become immobilizing because of the seemingly insurmountable task of transforming macro-level social structures that lie beyond the reach of even the largest public health programs.⁴²

SOCIAL DRIVERS OR SOCIAL ENABLERS

Neither of the previously noted frameworks, individual risk or population vulnerability, is likely to be productive, at least not without an understanding of the social and the inclusion of community, where community is understood as more than a collection of unconnected individuals, but in terms of the social relations between its members. Alongside the increased attention to community by UNAIDS,¹ the UNAIDS Investment Framework Study Group⁴³ and the aids2031 Social Drivers Working Group⁴⁴ have stressed the importance of social drivers or social enablers. Social drivers have been defined as

core social processes and arrangements – reflective of social and cultural norms, values, networks, structures and institutions – that operate in concert with people’s social practices to influence HIV epidemics in particular settings.^37(p2–3)

These related concepts, social enablers and social drivers, are informed by an understanding of the centrality of community in social transformation. In their discussion of social drivers, Vincent and Miskelly,⁴⁵ Campbell,^46,47 Campbell et al.,⁴⁸ Auerbach et al.,³⁷ Parkhurst,⁴⁹ and Schwartländer et al.⁴³ all acknowledge the role of community mobilization and community participation. For example, Campbell speaks of competence as in “competent communities”^47,48; building competence depends to a large degree on facilitating “programmes and processes that serve to buffer or ameliorate the impacts of social inequalities on people’s health.”^47(p21) In a similar vein, Auerbach et al.³⁷ define resilience as “in place when individuals are able to manage the risks that are present in their environment.”^44(p8)

Both community competence and resilience bring to the foreground communities’ capacities to deal or cope with risks that are occasioned by social drivers (e.g., social inequalities). Thus, vulnerability, although not completely banished, does not render the individual incapable of action, because these accounts understand agency as being made possible by competent communities and enabling environments. For instance, the aids2031 Social Drivers Working Group^44(p9) casts resilience as the product of a dynamic interplay between individual agency and AIDS competent communities, an interplay shaped by elements of a health-enabling environment. Communities are understood as playing a number of roles: they connect and engage people who have similar issues and concerns; they support activities that target people already involved in care, in harm reduction, in drug treatment services, and those already using sexual and reproductive health services; and their objectives include advocacy, transparency, and accountability efforts. Importantly, social drivers are understood as dynamic (e.g., when described as “complex, fluid, non-linear, and contextual”^37[p3] and “core social processes and arrangements”^37[p3]). In so doing, a discussion of the realm between individual agents and social structures is enabled.

The social drivers approach evokes how communities, in connecting and engaging people, are central to the production of new social practices and the development of social norms. However, communities do more than this, and the previously noted conceptualization of social drivers risks occluding the very realm it strives to open up and work with when, for example, social drivers are compared to social determinants.^37(p2–3) Although the important role of collective agency in HIV prevention is emphasized, collective agency is cast as an aggregate of individual agency (aids2031 Social Drivers Working Group⁴⁴), with the result that the conceptual means to understand modes of agency as they arise in social relations are overlooked. What is missing is an understanding of social practices and the norms that regulate them and enable people to act.²³ Moreover, the repeated reference to individual agency is of concern, as is the absence of any notion of collective agency.

If there is one thing that the last 30 years of national and grassroots experience in HIV have taught us, it is that communities and collective action provide the possibilities for change. Social change is always a function not of individual behaviors but of the collective actions and interactions of groups of people. Moreover, social change is always emergent, often in response to the actions or omissions of others (such as in relation to drug treatment access or HIV prevention when governments fail to act). Because such actions are contingent, social change is best understood as the unpredictable outcome of collective experimentation, experimentation that may work in unintended ways (such as when actions regarding HIV trigger broader education and health sector reform).⁵⁰

Fundamentally, people act to transform the social via practices that they develop to respond to, in this case, HIV risk. In so doing, they transform the social. As Parkhurst⁴⁹ notes, defining a social drivers approach as one that builds AIDS resilience implicitly applies a normative system in which people’s capacity to act to resist HIV is valued. This approach is conceptually aligned with the capability approach to social development developed originally by Sen^51,52: building capabilities enables people to achieve what they desire, rather than imposing a single goal from outside. For instance, gay men who affirm their identity as gay or who seek intimacy and pleasure in sexual activity have not embraced abstinence or foregone casual sex, but have devised a range of innovative strategies and practices for minimizing the risk of HIV transmission, many of which (e.g. condom use) public health has later adopted.⁵³ A social drivers approach is also closely linked to some of the key insights that can be drawn from the broader literature on social movements,⁵⁴ precisely because it emphasizes the way in which resistance to multiple forms of social inequality and exclusion can lead to the development of what Castells,⁵⁵ following Alain Touraine, has described as project identities: identities that produce, and in turn, are produced by broader collective projects aimed at social change in response to perceived inequities.

The argument we are making for understanding the malleable social practices that communities continually develop is animated by a body of work in the social sciences that attempts in different ways to address the limitations of notions of social structures as fixed and causal.⁵⁶ In the remainder of this article, we substantiate and add detail to this argument about the centrality of the collective agency that arises in the social connections within communities, groups, or networks.

ILLUSTRATIONS OF EMERGENT COMMUNITY RESPONSES

A recent special issue of Substance Use & Misuse edited by Latkin and Friedman⁵⁷ focused on the role of drug users as agents of social change. Here, we draw on research conducted in 2 contrasting settings to illustrate the emergence of community responses to the threat of HIV among gay communities in Australia, and the coalition building entailed in the grassroots Brazilian response.

Australian Gay Communities

Partnership between government, communities, health care professionals, and researchers has been the hallmark of the comparatively successful Australian response.^58,59 In particular, the manner in which HIV prevention responses have emerged from gay communities and their members, those most affected by HIV in Australia, demonstrates the importance of collective agency and the building of gay community capacity with support and funding from government.

Findings from a number of studies of gay men in Australia illustrate the ways in which gay communities developed a number of risk reduction strategies over time in response to changing medical knowledge. As noted by Kippax,⁶⁰ these strategies include condom use, negotiated safety (unprotected sex within a known seroconcordant HIV-negative regular relationship), poz-poz sex (unprotected sex within a known seroconcordant HIV-positive regular relationship), the more widely applied strategy of serosorting (unprotected sex within assumed seroconcordant casual sexual encounters), strategic positioning (taking up the receptive or insertive position in sex depending on HIV status), reliance on undetectable viral load, and the use of nonoccupational post-exposure prophylaxis (nPEP). Gay men also took up testing for sexually transmissible infections (STIs) when it was advocated.

With the exception of the last 2 strategies, nPEP and STI treatment, all of the preceding responses were developed by men in the gay community on the basis of what they understood about HIV, its transmission, and HIV medicine. In other words, each of these strategies was an emergent response from within gay community and was not imposed from the outside. Gay men developed their own HIV prevention strategies, strategies that were congruent with, or at least not at odds with, their desires. These strategies included some but not all those advocated or endorsed by public health. The transformations of their sexual practice entailed more than adopting new behaviors. For instance, gay men’s use of condoms (a somewhat surprising strategy given the strong association between condoms and heterosexual sex at the time), signaled a shift in the kinds of sexual and social relations being developed in gay communities. Casual sexual encounters started to be understood as social relations that entailed “new forms of mutual responsibility and autonomy.”^61(p44) Using a condom became an expression of care (for oneself and the other) and of one’s affiliation with the gay community. Notably, gay men in Australia shunned 2 strategies that were initially advocated by health care professionals, namely, abstinence and reduction in the number of casual sexual partners. Rather, as Race⁶² has argued, gay men, as members of gay community, have incorporated medical knowledge and ideas about HIV transmission into their sexual practice in a way that sustained gay culture. Gay men’s resilience, their capacity to act, lay in their connectedness to other gay men, who acted as they did themselves. In this way, HIV prevention strategies have been embedded into the continuous transformation of social relations connecting gay men. Such connectedness and community activity enabled a collective agency, and the norms regulating sexual and other practices changed, making sexual practice safer.

The evidence of the effectiveness of this response, which was effective in the years up to the late 1990s,^63,64 is based on declines in HIV prevalence, which were shown to be linked to changes in behaviors, such as unprotected anal intercourse and the adoption of condom use.⁶⁵ These changes were, in turn, linked to the promotion of condoms by peer educators and others, and the policies adopted across Australia with reference to the National HIV/AIDS strategies.^53,59 Essentially, as condom use with casual partners became the norm regulating anal intercourse, HIV prevalence declined.⁶⁰ Early behavioral surveys carried out in the mid to late 1980s and early 1990s, followed by The Gay Community Periodic Surveys that have taken place across Australia since 1996, documented the decline in unprotected anal intercourse with casual partners.⁶⁶ Although worrying, the increase in HIV incidence in recent years among gay men does not negate the role of community in earlier success in curbing HIV transmission. Rather, it challenges public health and social science to document the emergent nature of unintended and unforseen social formations that have had real consequences, in this case, for gay communities. Notably, the increase in HIV incidence since 1997 or 1998 poses difficult questions about the sustainability of community responses. A community is not something that can be understood as a universal good. However, rather than conclude that the time for harnessing community responses to HIV has passed,⁶⁷ we argue that the recent increase in HIV incidence signals the need to develop an understanding of the social processes involved in shaping communities. We need to understand both processes shaping how gay men connect to each other,⁶⁸ but we also need to understand the processes shaping the continually shifting relations between gay communities, biomedicine, and public health policies. Notably, the rise in Australian incidence has occurred alongside the rise of biomedical approaches to HIV. These approaches are less attuned to the nuances of community, and in some parts of Australia, are also related to a decrease in the funding of community organizations. Understanding community in relation to public health helps to make sense of the Australian evidence that the recent increase in HIV incidence and the different patterns of incidence in different states are related to changes in public health policies⁶⁹ and a decline in HIV prevention funding on the part of some state governments.⁷⁰

Brazilian National Response to HIV

In Brazil, as in Australia, the earliest effective responses to the epidemic emerged from the mobilization of affected communities.⁷¹ Communities of gay men played an especially important role in promoting the idea of safe sex through the eroticization of a wide range of lower risk sexual practices, and prioritizing the use of condoms for anal sex. Community-based HIV prevention later provided the point of departure for the uptake of safe sex approaches as part of official government programs reaching other populations and communities. Perhaps because the HIV epidemic emerged during rapid political change (during the return to democracy after a long military dictatorship), an early critique of structural factors shaping the epidemic and structural violence affecting the lives of affected communities led to a strong focus on resistance to social and economic oppression as key to strategies aimed at responding to HIV and AIDS—and on the defense of human rights as a key part of HIV prevention programs.^72–75

One of the most important characteristics of the Brazilian response to HIV and AIDS was widespread recognition of the ways in which community mobilization would be necessary to stimulate broader social and political mobilization of Brazilian society, and the importance of building coalitions across a range of affected communities to mobilize society more broadly.⁴¹ In Brazil, an early focus not just on identity but also on solidarity led to the development of linkages across a range of diverse communities and populations; gay, bisexual, and other men who have sex with men, sex workers, and drug users were centrally important, but also quickly began to interface and collaborate with progressive religious organizations, labor unions, women’s health and feminist organizations, youth groups, and the emerging Black movement, among others.^75–77 Solidarity across a range of populations that perceived themselves to be vulnerable to the epidemic because of their shared status as historically marginalized and discriminated against became the basis for a shared understanding of pushing back against the epidemic. AIDS activists in civil society and in the machinery of the state thus emphasized not only individual agency, but even more importantly, collective agency as an effective response to HIV and AIDS, building a rights-based strategy for HIV prevention as part of broader efforts aimed at ensuring the right to health (as articulated in Brazil’s 1988 Constitution) as a fundamental part of citizenship.⁷⁸

Perhaps the most important lesson from the Brazilian response to the epidemic has been the extent to which it is possible to offer an alternative to the kinds of individualist and rationalist approaches that dominate HIV prevention—emphasizing the need for structural change, but not allowing the perception of structural obstacles to become a barrier to meaningful action. By contrast, the most sophisticated work on vulnerability and HIV in Brazil sought to utilize conscientização or “consciousness raising.” This is a critical analysis of the social circumstances that entrap and immobilize social actors, which is a crucial step in constructing the agency necessary to take action in response to these circumstances.⁷⁹ This has gradually led to the development of one of the most progressive policy responses to the epidemic⁸⁰ and to a wide range of prevention programs implemented for and by diverse communities and populations.⁷⁷

The greater size, along with the sociological complexity, of the Brazilian population poses a range of challenges in examining the effectiveness of community responses in controlling HIV. It is harder to focus on any single population, such as the gay community in Australia, while trying to assess the impact of social mobilization in response to the Brazilian epidemic. These difficulties are magnified by the fact that Brazil has not adopted systematic HIV surveillance in key population groups, such as men having sex with men and injection drug users. HIV infection trends must be inferred from AIDS case reporting and from targeted surveillance studies that rarely provide the information necessary to analyze trends over time.

Nonetheless, in its progress report on the Brazilian response to HIV and AIDS from 2010 to 2011, prepared as part of the United Nations General Assembly Special Session process, the Brazilian Ministry of Health has clearly affirmed that the epidemic has “stabilized and concentrated in certain vulnerable population sub-groups.”^81(p8) It reported that the rate of HIV infection prevalence in the population aged 15 to 49 years has remained stable at 0.6% since 2004, being 0.4% in women and 0.8% in men. With regard to more vulnerable population groups older than 18 years, studies in 10 Brazilian municipalities (Manaus, Recife, Salvador, Belo Horizonte, Rio de Janeiro, Santos, Curitiba, Itajaí, Campo Grande, and Brasília) between 2008 and 2009 estimated HIV prevalence rates of 5.9% in injection drug users, 10.5% in homosexual men, and 4.9% in female sex workers.⁸¹

Independent of seroprevalence and incidence data, important evidence of widespread changes in social and sexual practices, in large part as a response to the epidemic, also exists. Annual sales of male condoms increased nationwide from 5 million in 1985 to 395 million in 2001.⁸² Representative national surveys of sexual and HIV prevention practices have also clearly documented major changes between 1998 and 2005.⁸³ Condom use reported in the most recent act of sexual intercourse increased significantly in all regions of the country, for example, from 19.1% (in 1985) to 33.1% (in 2005) among people in regular sexual partnerships, from 24.5% to 46.3% among those in regular partnerships but also with casual partners, and from 63.5% to 78.6% among those with only casual sexual partners.⁸⁴ These rates were especially high among young people, from 16 to 24 years of age: 34.6% (in 1985) to 59.2% (in 2005) among those in regular sexual partnerships, 32.5% to 59.7% among those in regular partnerships but also with casual partners, and 81.7% to 92.0% among those with only casual sexual partners.⁸⁴

However, both activists and researchers in Brazil have raised significant concerns about the sustainability of this response, particularly in populations at greatest risk. Although government AIDS programs have acknowledged the greater risk faced by injection drug users and gay, bisexual, and other men having sex with men, political controversies and politicized policy debates threaten the relative success of HIV prevention among both these populations.^85(p9–15) In responding to the epidemic beginning in the mid-1990s, as many as 160 needle and syringe programs had been established by 2003.^82(piv) However, as the world’s largest crack cocaine epidemic has taken shape in Brazil over the past decade, the relative success that had been achieved in framing drug use as a public health issue has given way to a growing return to punitive legal practices, and harm reduction programs around the country have been closed down in response to political pressure. Equally worrisome, growing political pressure from the multiparty Evangelical group in the Brazilian Congress has led the current government to cut support for public school programs against homophobia and to restrict the distribution of a major national HIV prevention campaign that had been designed to prioritize prevention among homosexual men and transgender people despite the widespread recognition of their especially high HIV prevalence rates.⁸⁶ Although these developments have been widely criticized by community activists, they highlight the extent to which political processes can undermine community mobilization, and the ways in which stigma, prejudice, and discrimination in civil society, as well as state-sponsored initiatives, can pose serious barriers to effective community-based responses.

CONCLUSIONS

Effective public health policies and HIV-prevention programs build on a sense of solidarity, common purpose, and collective responsibility to fight HIV and AIDS. The fight inevitably takes different paths and with different outcomes, because it is the community and its members who build, in the sense of devise, and to some degree implement, the response. In the right circumstances, communities can enable and encourage collective dialogue and critical thinking, and mobilize existing formal and informal networks, as well as build links with outside actors and agencies.⁸⁷ It is through such dialogue that social practices are modified and other practices, such as safe sexual and drug injection practices, are produced. It is also through such community dialogue and common action that norms that enable and sustain safe sex and safe drug injection are built. As Schwartländer et al. note: “Community mobilisation is essential for an effective HIV/AIDS response.”^43(p2035)

Recognizing the central role that community mobilization plays in shaping effective responses to the epidemic also calls attention to the ways in which communities are embedded in wider social and political contexts. These contexts cannot simply be reduced to or equated with abstract social determinants that organize social inequality; in a much more immediate sense, they are social and political processes that in some instances enable social action and transformation, whereas in other instances they may provide equally powerful impediments to collective agency and community mobilization.⁸⁸ Social and political contexts matter, and it is the interaction between affected communities and the social and political processes that they are enmeshed in that creates the conditions that may favor the possibilities for social change (enabling conditions such as respect for diversity and the rights of citizenship), or alternatively, undermine collective agency (through prejudice, stigma, discrimination, and denial of rights and recognition).

Understanding change—and effective HIV prevention—as complex social processes involves public health taking 2 significant steps. Firstly, to paraphrase Williams^36(p146) it involves public health approaching how people relate to each other “not simply [as] datum for epidemiological or sociological extraction” for the purposes of gauging “risk” or “vulnerability”; the social practices people engage in “co-constitute the world as it is” enabling communities to imagine consider, discount, devise, adapt, and adopt particular HIV prevention strategies. It follows that, secondly, rather than striving to augment the capacities of individuals, effective prevention focuses instead on the relations between people, the norms that regulate such relations and the social practices that constitute them, and the ways in which groups and communities as well as institutions respond to external forces, and in the case of HIV, develop strategies to reduce risk.

This social approach, which elsewhere has been termed a social public health,⁸⁹ moves beyond a reliance on individual capacities or social structures or drivers as separate entities, and recognizes that individual capacities are intimately tied to the enabling (or disabling) character of social norms, practices, and institutions, which are, in turn, understood to be transformed or modified by community mobilization and social movements. This emphasis on community mobilization and social movement action focuses attention on the centrality of collective agency to any process of meaningful change in response to HIV and AIDS, and highlights the reasons why grassroots activism has so often been more effective in responding to the epidemic than formal public health programs or interventions.^35(p7),90 Importantly, because the potency of collective agency lies in communities’ experimentation with developing and adapting different forms of social connectedness, public health cannot hope to understand this process of experimentation via a fixed blueprint or model. Furthermore, as Race⁵⁰ points out, any attempt to harness it that focuses on the implementation of universal solutions necessarily misses the malleable and contingent details of specific social processes and forces that make sense of an experiment’s successes or failures. Processes of individual and social change are linked via the domain of social relations that people and communities cultivate. HIV prevention needs first to interrogate the specificities of these malleable social relations so that it may then develop approaches aimed at enabling communities, and indirectly, their individual members, to develop HIV-risk reduction strategies by changing their sexual and injection practices or adopting HIV-prevention technologies.