Since the late 2000s, biomedical approaches to HIV prevention and treatment have become increasingly central to global HIV and AIDS policy guidelines and initiatives. The reasons for this are complex. Among other things, the perceived lack of effectiveness of many behavioral interventions, together with the difficulty of influencing the most important structural factors shaping the epidemic are especially important. But the controversy associated with many early efforts to scale-up of HIV treatment and prevention in the early 2000s also prepared the way for biomedical approaches, which for many seemed relatively straightforward in comparison to continued (and often heated) debates about the ABC (Abstinence, Be faithful, use a Condom) policies promoted by the PEPFAR Program of the US government, or some of the equally controversial (because of their much more explicit and positive exploration of sexuality) community-based prevention and education programs developed by affected populations at the frontlines of the fight against the epidemic. Within this context, biomedical approaches seemed to many to offer a relatively simple option, seemingly less fraught with moral controversy and condemnation.
It was, however, no accident that the ascendency of biomedical approaches to the epidemic took place at roughly the same moment that HIV scale-up internationally appeared to be peaking, and what would prove to be a protracted global financial crisis was taking shape, placing serious limits on budgets for global health generally, and for HIV in particular. As international donors tightened their belts, the perceived simplicity of many biomedical approaches – and especially of programs focusing on treatment as prevention and “test and treat” held strong appeal.
Yet as policies and programs such “test and treat”, increasingly take shape as the new normal in many middle- and even lower-income countries – promoted first and foremost by public health authorities, and especially in settings where rights-based policies in response to the epidemic have been tenuous at best, serious concerns have been raised about the ways in which the public health “targeting” of key populations may pressure members of marginalized and disempowered populations to agree to HIV testing, against their will or without the information and support needed for any form of informed consent. Concern has also been raised that such targeting may reproduce (intentionally or unintentionally) deeply problematic notions such as the idea of “risk groups”, increasing stigma, prejudice, and discrimination towards these perceived groups. Even in countries that have demonstrated serious commitment to principles of human rights as part of the response to the epidemic, the risk that test and treat policies and programs may unintentionally undermine that historic commitment has been raised as a serious concern. How to guarantee that such approaches will be implemented in ways that will not subvert key aspects of human rights that we want to promote and preserve – in particular, dignity, inclusion, recognition and respect for diversity and difference – has emerged as one of the key challenges facing the response to HIV in the midst of the fourth decade of the epidemic.
The third epidemic: stigma, prejudice and discrimination
In order to better understand these human rights concerns as they relate to debate about “test and treat”, “treatment as prevention”, “treatment for prevention” and indeed “biomedical prevention” more generally, it is important to remember the past and as well as some of the key conceptual shifts that have taken place over the years with respect to useful thinking about HIV and AIDS.
One of the earliest frameworks, developed in the late-1980s by Jonathan Mann and colleagues, especially through the work of the World Health Organization (WHO)’s former Global Programme on AIDS, was the idea of the three epidemics: (1) the “first” epidemic of HIV infection; (2) the “second” epidemic of AIDS cases; and (3) what was described as the “third” epidemic, the epidemic of social responses to the first and second epidemics, characterized by social stigma and discrimination.
Mann stressed that AIDS is not a simple fact, much less a simple or uniform biological entity. On the contrary, it is a complex social phenomenon, which develops historically in different stages, and through distinct and intertwined processes. The first epidemic, the epidemic of HIV infection, generally began silently and grew without being noticed, prior to the onset of opportunistic infections associated with AIDS. It was only with the onset of symptoms that the second epidemic became visible through clinical cases known as AIDS. This could happen seven, eight years or more, after infection with HIV. However, there was also a third epidemic, one that was just as dangerous as the first two. This third epidemic was the social response to HIV and AIDS – almost always based on panic, prejudice, stigma and discrimination.
Herbert Daniel, an early Brazilian AIDS activist, used to say that this third epidemic was more dangerous than the first two because of the symbolic violence that it involved. It was not a biological virus, but an “ideological virus” that installs itself on top of the biological realities of HIV, and which triggers negative social responses. It was this ideological virus that gave rise to what Paula Treichler described as “an epidemic of signification” – an epidemic in which stereotypes and stigmas abound, and in which the physical suffering that HIV and AIDS inflicted is paralleled by the emotional and psychological damage that human beings inflict on one another.
This is precisely the reason way some of the earliest, and most visionary, AIDS activists recognized the importance of locating the epidemic firmly within a human rights framework. Another Brazilian, Herbert de Souza (better known as Betinho), was among the first to make this connection. During a lecture given at the University of São Paulo’s Faculty of Law in 1987, he began to articulate a rights-based framework for thinking about the response to HIV as a way of combating the epidemic of stigma and discrimination. He began to develop perhaps the earliest argument – or at least the earliest one that we are familiar with – for the cure of AIDS, affirming that even if AIDS presently had no cure, someday one would come, and that until then, solidarity must lie at the heart of the social and political response to HIV, precisely because it can serve as a vaccine against stigma and discrimination.
It was roughly at the same time, or shortly thereafter, that Jonathan Mann began to stress the importance of human rights in the response to AIDS. In his informal briefing to the United Nations General Assembly on 20 October 1987 Jonathan Mann first articulated his idea of the third epidemic “that relentlessly follows the first two epidemic.” And it was just after that, first in the 41st World Health Assembly in May of 1988, and then later in the address that he gave to the IV International Conference on AIDS in Stockholm, Sweden, in June of 1988, that Mann developed a compelling argument about why “stigmatization may itself represent a threat to public health.” It was World Health Assembly resolution WHA 41.24, on the avoidance of discrimination in relation to HIV-infected people and people with AIDS, adopted on 13 May 1988, that called on Member States “to protect the human rights and dignity of HIV infected people and people with AIDS”, and “to avoid discriminatory action” and “stigmatization” in the “provision of services, employment and travel” and “to ensure the confidentiality of HIV testing” and to promote the “availability of confidential counseling and other support services to HIV-infected people and people with AIDS.”
Inequality, oppression and vulnerability
There is no aspect of the global HIV epidemic that has been as deeply rooted, as persistent, or as difficult to combat as the epidemic of stigma, and social ostracism that affects people living with HIV as well as those suspected to be at risk of infection. Today, as much as in the past, all three epidemics need to be confronted, and it is because of this that human rights are such an important weapon in the fight against AIDS. But in order to use a human rights framework successfully, we must face up to what might be described as a paradox between the universality of human rights, and the particular forms of “vulnerability” that many individuals, communities and populations face in relation to the epidemic.
On the one hand, we have to recognize that in the abstract, AIDS has no gender, no race or ethnicity, no social class or sexual orientation. This fundamental principle of equality requires the defense of human rights for all people. It is only through the universality of this defense that we can possibly fight the third epidemic. At the same time, however, and perhaps this is one of the most difficult challenges, we must also recognize that the AIDS is not an “egalitarian” or “democratic” epidemic. People do not all face the same risks in relation to HIV. Vulnerability to HIV is patterned so as to render some groups more systematically vulnerable and at risk than others. It generally does this in such a way that most often those who are the weakest suffer most. Both the biological virus and the ideological virus move through – and exploit – the cracks, inequalities and fissures in society.
This, in turn, leads to a second major issue that must be engaged with in understanding contemporary debates on policies related to testing and treatment, and why these must be interrogated from a human rights perspective: namely, the role of “structural violence” in affecting the vulnerability of certain groups and communities.
The most basic thinking behind a test and treat approach, like most public health approaches, is based on mainstream epidemiological research – following the numbers in order to identify the populations at highest risk, and then “targeting” these populations with public health “interventions”. But a focus on structural violence, as on the social determinants of health more broadly, encourage us to remember that this kind of an approach will be seriously limited in its effects. We also need what Naomar de Almeida Filho has described, in a brilliant turn of phrase, as an “epidemiology without numbers,” in the form of a good theory of what it is that lies behind the patterns that epidemiological and prevention science reveal. In this respect, both theories of disease as well as theories or explanations of how a particular disease moves socially, are important. It is precisely this understanding that theoretical insight into the workings of structural violence can provide.
Through their linkage to structural violence HIV and AIDS move through society. The epidemic of HIV infection is fuelled by axes of social inequality. It is linked to poverty and economic exclusion, operates in tandem with racial and ethnic discrimination, and exploits inequalities of gender and sexuality. HIV feeds on sexual oppression, as well as profound inequalities between people of different ages. The epidemic is fuelled by population displacement, forced migration and homelessness. At times, there may be unexpected detours in the route followed, but almost everywhere social inequalities are fundamental determinants not only of vulnerability to HIV infection, but of who is most likely to become ill, or to have access to treatment afterwards. And it is precisely where inequalities are greatest, and where multiple forms of inequality crosscut – that we see the greatest impact of the epidemic. Here, a synergy exists between multiple forms of structural violence, and because of this HIV is sometimes best thought of as a “syndemic” rather than just an epidemic.
If we engage seriously with the notion of structural violence, we can begin to make a change in the paradigm through which we understand and respond to HIV. As a first step, it is essential to shift from thinking about individual risk and risk groups to thinking in terms of social vulnerability. This does not mean that there are no risk practices. Obviously, there are practices that are more or less risky, and practices that are more or less protective. However, when left without further qualification, the idea of risk assumes that an individual’s behavior should be the central point of discussion. The idea of social vulnerability, in contrast, encourages us to focus also on the economic, social and cultural determinants of health in order to respond effectively to the epidemic.
Politics and Confrontation
A third major issue that must be addressed in order to assess a policy such as test and treat from a human rights perspective is to understand politics as the essential field on which HIV prevention can be built. This does not mean that technologies have no importance. The techniques of safe sex, invented over the history of the epidemic above all by affected communities – utilizing technologies such as the male condom, later the female condom, and even more recently by biomedical technologies such as pre- or post-exposure prophylaxis (PrEP and PEP) are of the utmost importance. However, they add almost nothing if we fail to engage with the political issues that must be addressed in order to guarantee their availability and use as part of conscious and informed choices – choices made by persons cognizant of their own agency, and as persons who understand themselves as the subject of fundamental human rights. No matter how sophisticated technologies may be, if we fail to overcome the barriers produced by ongoing prejudice and discrimination, it will matter little what technical advances are on offer. In short, we must create the conditions for diverse tools and technologies to be used by people who need and want them – and to create these conditions we must face up to politics as it impacts on the distribution of resources and power.
Politics here needs to be understood from at least two directions or perspectives. The first is in the more macro sense – in terms of partisan and even electoral politics, in those contexts where democratic political systems exist. The greatest impediment to confronting the epidemic for more than 30 years now has been the lack of political courage and political will on the part of leaders often at the very highest levels, and this is true almost everywhere. It happened during the Reagan administration in the USA in the 1980s, during the Mbeki government in South Africa government in the 1990s, and more recently, in Uganda and other countries where state-sponsored discrimination has contributed to a backlash against legitimate struggles for sexual rights. The worst impediments to the fight against HIV have always been political, hindering the possibility of meaningful actions in the face of the epidemic. If we do not engage with politics head-on, we will never make significant progress in tackling the epidemic in the more narrow spheres of public health, education or social welfare systems.
This is not to suggest that it is only in these large-scale political arenas, or on high-level political leaders, that we must focus our attention. We must also recognize there is another face to politics – as it reveals itself in the messages that underpin guidelines for programmatic action and policies for HIV prevention and care. It is therefore also necessary to analyze governmental practices, the practices of ministries, and the programmatic actions implemented and guided by these political views. In most discussions of HIV, there has been a remarkable lack of courage, even in the fourth decade of the epidemic, to place these topics on the table and discuss them openly and clearly as part of informed, public debate.
This lack of political courage is perhaps not surprising in the light of neoliberal tendencies in the international arena over roughly the same time as that when the HIV epidemic evolved. To the extent that a narrow economic rationality has so often been used as a guide for planning and programmatic action, suggesting that the money available must be rationed in specific ways, it is perhaps not surprising that even well-intentioned politicians and policymakers should have reached this conclusion. But this is precisely why a human rights approach remains so essential to moving actions forward.
The conviction, articulated by AIDS treatment activists around the world, that every life matters – and that no one can be denied access to adequate treatment and care simply because of where they may have been born, or any other quality or characteristic that is somehow deemed unjustly to make their lives less worthy – offers an alternative perspective to the vision of scarcity and economic rationalization that was itself simply a façade for the continued promotion of underlying stigma and discrimination that has persisted on up to the present day.
The time is right to rediscover these basic human rights principles – principles that have too often been lost in the well-intended, but overly utilitarian logics of HIV scale-up. It is time also to extend them from questions of access to treatment and care, and to see that they have resonance too for access to prevention. This means re-politicizing the response to the epidemic in a positive way, and seeing clearly the ways in which the progressive biomedicalization of the HIV response in many parts of the world – cloaked in promises of “the end of AIDS” and imminent arrival of “an AIDS-free generation” – too often hides the reality of dramatic “scale-down” in the response to HIV as the world moves on to more pressing problems (climate change, the war on terror, Ebola, choose your favorite…).
Challenges for the Future – and for the Present
Today, countries in very different parts of the world are prioritizing and implementing HIV prevention policies such as test and treat – an approach that certainly has its importance, especially in settings where HIV has not yet generalized to the population as a whole. In such contexts, with expanded access to HIV testing and effective treatment for those who test positive, it is perhaps in theory possible to turn HIV into a chronic but manageable condition. Such an approach carries important benefits for primary prevention: when people who need treatment are actually being treated, it reduces their viral load, making HIV transmission to others less likely. With political will and an amount of money not that absurd, in principle it should then be possible to control a concentrated epidemic through the use of existing techniques and technologies.
However, it is important to understand that a number of different logics guide this type of strategy. If one of these logics presents itself as technically reasonable, others may be less benign. Test and treat has also been adopted in a wide range of very different contexts as a cost-effective way to try to sustain HIV programs at a time when more than a decade of HIV scale-up has begun to give way to the contemporary reality of “scale-down.” In countries as different as Brazil and Vietnam, and as international agencies and donors vacate the field, often well-intentioned public health officials and practitioners in the front lines of the struggle for HIV prevention, treatment and care turn to this kind of strategy as a way of guaranteeing the sustainability of a minimal level of HIV service provision. In parallel, they may scale back other undertakings that in many places were largely dependent on external donors in any case: costly behavioral interventions, sometimes controversial community-based approaches, broad-based health education programs, and perhaps worst of all (at least from the perspective of the neoliberal logic that now dominates global AIDS policy almost everywhere), the kinds of structural changes that in the late-1990s and the early 2000s activists and researchers had so insistently called for – changes that could only be achieved with an even more massive influx of resources than was seen during the scale-up of HIV programs that took place in the 2000s.
It should come as no surprise, therefore, that the so-called “AIDS backlash” (in which many from other sectors of the public health and global health fields have begun to question why so much money has been directed to fighting HIV), the new emphasis on biomedical approaches to prevention, and the extended global financial crisis that began in 2007 and 2008 that has reduced spending on HIV and on global health more broadly, have coincided historically. Policies and approaches such as test and treat “make sense” within this context. They seem reasonable. They appear cost effective. They offer shell-shocked public health officials and practitioners the hope of sustaining what may be most essential in their programs at a time when their budgets are otherwise being cut, and when the international donors who pumped millions into their coffers during the hey-day of HIV scale-up are on the run, seeking other urgent (and perhaps more scientifically “interesting”) problems to solve.
But no matter how technically reasonable approaches such approaches may seem to be, they carry serious risks. On the one hand, these risks may be described as almost “programmatic”: the risk of transforming the response to HIV into a set of seemingly depoliticized biomedical practices and public health procedures – far easier and cheaper to sustain than earlier notions of political and social mobilization and community-led responses aimed at structural change. On the other hand, these risks are also conceptual, and, hence, strategic. To justify programmatic changes emphasizing biomedical approaches and mainstream public health programs, conceptual and analytic advances such as the analysis of vulnerability and the role of inequality as driving the epidemic, are increasingly abandoned.
What used to be described as “vulnerable populations” are nowadays characterized by official agencies as “key populations” – those at risk of “being left behind.” Rather than encouraging their mobilization for community involvement and political change, key populations now need “targeted” or perhaps more benignly “brought along” through inclusion in well-intended programs that respect the limits of the health-care system and avoid calling for deeper structural change. But the risks here go well beyond those that are solely programmatic or simply conceptual. They travel to the heart of what long ago we came to understand as the third epidemic, reproducing many of its worst aspects. Key populations can too easily be reinterpreted as “risk groups,” and even well-intended efforts to test and treat can easily lead to the intensification of stigma and discrimination. As public health officials seek to identify the individuals and social groups most in “need” of intervention, they unwittingly and unintentionally deny the most basic principles of health and human rights we have worked so hard to construct.
Obviously, there is no necessary reason why the various risks that identified here must necessarily be played out in this way, with tragic consequences. There is no doubt that to encourage people to be tested can stimulate conscious and informed choices. Where there is the necessary follow-up, adequate counseling, appropriate and accessible services available to people living with HIV, and true protection of their rights as citizens and their dignity as human beings, there is no question that the risks pointed to can be overcome, with health promotion providing a source of empowerment rather than of stigma and discrimination. But here again, we face a political issue. In order to implement a policy of test and treat that would be capable of respecting the most basic human rights, it is necessary first to establish the enabling conditions for the awareness that people must have in order to be able to make empowered and informed choices about their lives. That will only happen when they are able to make decisions not simply to follow a doctor’s orders – to do what they are told to do at their local health post, or even by a community outreach worker, but to make conscious choices about testing (and treatment, if necessary) as an active subject of rights.
For biomedical prevention to become more than a technocratic directive depends upon the right to health being understood as fundamental to the rights of all citizens. It requires us to learn the lessons that more than 30 years of activist and community-based responses to HIV can teach us if we are interested enough to learn. Like the early treatment activists who organized community fora to discuss new options in the desperate search for effective therapies during the early years of the epidemic, for test and treat policies (and other biomedical responses to the epidemic that have become such a central priority in HIV programs today) to be more than an external imposition on affected communities, they need to be adequately debated and discussed publicly. They need to be interrogated and endorsed by the populations that they are intended to serve. Only this way can they become part of what has been described as democratic science, and a democratic public health, rather than another exercise of compliant governmentality.
Building on the work of organizations such as the Treatment Action Campaign (TAC) or the International Treatment Preparedness Coalition (ITPC), we need to develop new forms of literacy with the communities that are the object of the current biomedical thrust – moving beyond treatment literacy itself in developing a kind of community-based prevention literacy that existed in earlier periods in the history of the epidemic, but which has become increasingly muted as HIV prevention became taken over by public health experts and international agencies. Indeed, ultimately what we must construct is both treatment literacy and prevention literacy (or a combination treatment/prevention literacy, if you like) that will retain the best of the past while also embracing prevention more fully as part of the way forward. We also need to understand that implementing the kinds of new approaches and new technologies that are increasingly advocated as the road to success and the key to a world without AIDS will only be possible if we recover, or rediscover, the deep commitment to fundamental human rights rather than the empty sloganeering that seems to taken over much of the global HIV response.
In short, for test and treat (or other approaches like it) to become the answer to HIV in the middle of this, the fourth decade of this epidemic, it is necessary for there to be a renewed focus on politics and the political. This will only happen with enhanced collective and community mobilization, itself the consequence of political will. It is necessary too to confront the return of stigma and discrimination and to strengthen the defense of human rights. It is in the political arena that these new battles must be fought, not in the technical field. Technical experts from international agencies and officials from ministries of health can be our allies – and sometimes they already are – but they are not (with rare exceptions) those best placed to do this kind of work. To confront the deepest challenges in this new phase of the epidemic, what is needed is the political effort of those most affected by HIV and, through their efforts, the mobilization of wider societies. In this respect, there remains much work to be done. Contrary to recent global rhetoric, AIDS is nowhere near finished, but the work that needs to be done is work that we know how to do.
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