From saving lives to cutting costs? Challenges for a new era for activism

This article is part of the following series: Keywords, Transcriptions Series

In 2011 South Africans witnessed a series of animated exchanges between Western Cape Premier Helen Zille and AIDS activists on the question of ‘sexual responsibility’ and the criminalization of HIV positive people who knowingly infect others[1]. Zille, the leader of the Democratic Alliance (DA) political opposition, argued that those who behave sexually irresponsibly do not deserve their free access to expensive, state-funded HIV treatment. In addition, she argued that those who knowingly infect others ought to feel the full might of the law (Cape Times, 22 November 2011).  Zille’s many civil society detractors, such as the Treatment Action Campaign’s (TAC) Nathan Geffen, vociferously challenged these positions. AIDS activists were particularly incensed by Zille’s calls for the criminalization of HIV transmission and the introduction of compulsory HIV testing (Cape Times 23 November, 2011). Helen Epstein, the author of The Invisible Cure, also criticized Zille’s ‘draconian’ approach on the grounds that it was both unworkable and that it violated basic human rights to privacy and dignity (Cape Times, 25November 2012). Zille also attracted the ire of activists and health professionals for her controversial ‘Get tested and Win HIV campaign’ whereby those who test for HIV stood to win prizes in a competition. While Nathan Geffen, Helen Epstein and numerous other activists and health professionals rebutted Zille’s HIV statements and interventions, it is important to situate Zille’s unorthodox ideas within the wider context of changes in global health discourse and potentially devastating donor cuts to the funding of HIV programmes in Africa. To understand these developments it is necessary to step back a decade and examine the wider global context within which these developments have emerged.

In the mid-1990s, HIV/AIDS came to be framed as an exceptional problem that required emergency relief interventions, thereby making it possible for massive government, humanitarian and donor resources to flow to HIV treatment and prevention programmes. During this period conventional neoliberal economic thinking was suspended in order to save lives (see Ingram, 2012). The exceptional status of HIV/AIDS also made it possible to challenge the global pharmaceutical industry over generics, and thereby challenge the World Trade Organisation’s Trade Related Aspects of Intellectual Property Rights(TRIPS) protection of patents and intellectual property rights regimes.

This “state of exception” was especially pronounced in South Africa in the late 1990s and early 2000’s. At the time President Mbeki and his Health Minister were seen by AIDS activists, the media, and the wider public, including the international community, to be condemning millions of people living with AIDS to a death sentence by virtue of the government’s opposition to the provision of ART. This exceptional state of affairs in turn animated the activism of the Treatment Action Campaign (TAC), a globally connected social movement whose tactics and international visibility contributed towards framing the pandemic in Sub-Saharan Africa as a global health emergency. Following President Mbeki’s reluctant introduction of a national AIDS treatment programme in 2003, the exceptional status of HIV began to recede, and the pandemic was increasingly framed, by the South African state, the media and the wider public, as a chronic, manageable illness, much like diabetes. These developments in South Africa highlight the need for scholars and activists to take cognizance of the effects of the shifting and contingent character of “official” representations of diseases. Clearly, such representational matters can have direct consequences for the ways in which HIV services and resources are distributed at the level of the nation-state and globally.

This exceptional status of HIV/AIDS was the result of sustained mobilization of AIDS activists and health experts in many parts of the world. By means of these globally-connected modes of mobilization, HIV/AIDS came to be seen as simultaneously a global justice, global health and global security issue. Numerous studies and think tanks warned of potentially catastrophic global security threats posed by the pandemic. In particular, fears mounted that weak states in Sub-Saharan Africa could collapse under the strain of losing civil servants to the disease.  This framing of the pandemic as an emergency made it possible for exceptional steps to be taken by governments, donors, foundations and various other multilateral agencies. This framing also made it possible for the AIDS pandemic to be understood as simultaneously a health, human rights, development, security and humanitarian crisis (Ingram 2012).

This framing of the pandemic was based on a humanitarian discourse of salvation in terms of which ‘saving lives’ appeared to trump all other considerations. It challenged the austerity measures of the neoliberal agenda of the 1980s and 1990s, and made it possible for the production of ARV generics that were considerably more affordable, especially for countries in the global South. However, at the same time, this phase of ‘scaling up’ treatment also witnessed the massive involvement of philanthropic organizations such as the Gates Foundation that reintroduced neoliberal ideas and practices by the backdoor. These organizations did this by establishing public-private partnerships, and promoting managerialist approaches that focused on entrepreneurialism, market mechanisms and the commodification in global health governance. In other words, a shift took place from an earlier humanitarian stress in the mid-1990s on saving lives at all costs, to an approach in the early 2000s that revived neoliberal techniques for assessing HIV programmes based on economistic criteria of cost, efficiency and impact (Ingram 2012).

These developments have emerged alongside current perceptions that HIV/AIDS has become an ‘unexceptional’ chronic, manageable condition much like diabetes. This has made it possible for governments, donors and foundations to argue that it is time to shift funding priorities to other diseases and issues. Donor countries are also cutting back their funding of HIV programmes because of ‘financial constraints,’ thereby threatening to undermine treatment programmes in many African countries. The fears of the collapse of the 2011 round of funding to the Global Fund to Fight AIDS, TB and Malaria was widely perceived by AIDS activists to represent a potentially catastrophic threat for the fight against HIV/AIDS, especially in Africa where 68% of those living with HIV live. So how come these economic considerations of ‘scarcity’ and cost saving have come to trump earlier humanitarian imperatives of saving lives, and what impact have these changes had in terms of the ways in which HIV/AIDS is being framed by citizens, governments, donors, politicians and policymakers?

One of the consequences of this shift from a rationality of humanitarian salvation to one that focuses more on administration has been the insistence of donors and foundations on more efficient auditing technologies and assessments of the costs and impacts of HIV programmes. In fact, it could be argued that once the humanitarian response became institutionalized, it precipitated a return to neoliberal techniques of auditing in the name of addressing what would appear to be quite legitimate concerns about inefficiency, bad governance and corruption.

Another consequence of these developments has been the attack on treatment as a right and entitlement. This has contributed towards calls by some, including the Western Cape Premier, for access to free HIV treatment to be conditional on patients being ‘responsible’ in their sexual behavior. Such a position assumes that everyone is equally able to assert autonomy over their bodies when it comes to matters of sexuality. It does not begin to consider the situation of hyper-marginalized social groups, for instance sex workers and poor women living under patriarchal regimes, who may not have ‘free choice’ when it comes to sex. Are they too to be punished and sent to jail because they act ‘irresponsibly’ in their sexual lives?

The debates on sexual responsibility and cost-cutting have emerged in South Africa seven years after the establishment of what is now regarded as the largest antiretroviral therapy (ART) programme in the world. Such debates have also emerged at a time when AIDS is no longer dominating news headlines and there is a growing perception that the crisis is ‘under control’. Whereas during the mid-1990s there seemed to be an unquestioned global consensus on the need to save lives at any cost by providing ARVs to people living with AIDS, this humanitarian salvation discourse is now being questioned in influential quarters.  Questions are being raised by politicians, donors and policymakers about whether to retain the exceptional status accorded to HIV, and there are growing calls for funds to be siphoned off to fighting other medical conditions that are seen to be less well funded. The basic premise of these policy shifts is that the AIDS crisis is over, and HIV should no longer be treated as an exceptional case. But is the crisis over?

In South Africa an estimated 5.6 million South Africans are currently living with HIV, and prevention programmes are struggling to curb new infections; in 2009 alone there were an additional 310,000 new infections and one third of pregnant women at public sector antenatal clinics test HIV-positive. Over 1.6 million people are currently on treatment. However, this is only an estimated 37% of those who should be on treatment; an additional 1.6 million people will need to be put onto treatment by 2015. In addition, given these devastating figures why are donor countries cutting funding for the Global Fund?

HIV programmes throughout the world are being subjected to cost-benefit calculations and cuts based on arguments of scarcity. After the global financial crisis of 2008, these programmes are under even greater pressure to prove that they are ‘cost-efficient.’ There is also a desperate search by donors for newer, improved and cost-effective HIV technologies such as gels, vaccines, medical male circumcision, ‘prevention by treatment’ and so on.

These austerity arguments by donors and governments are being articulated at a time when newspapers and television screens no longer show dramatic images of emaciated Africans dying from AIDS, or activists fighting for treatment in the streets. In addition, the burden of the crisis is largely being absorbed by female caregivers, particularly grandmothers, who lack public visibility. Denial, shame and stigma have also colluded to drive HIV underground such that people are routinely perceived to die of pneumonia and TB rather than AIDS.

The AIDS crisis in South Africa has receded from public consciousness because of many factors, including AIDS fatigue and widespread beliefs that the disease is ‘under control’ now that ARVs are available at public clinics. But, as AIDS statistics show, the emergency is far from over and funding cuts to HIV programmes would be disastrous. Given this context AIDS activists argue that it is crucial to return to prioritizing saving lives over donor countries’ preoccupations with saving costs. Commenting on cuts to the Global Fund, Stephen Lewis, Co-director of AIDS-Free World, recently noted, ‘It’s not just the fact that people will die; it’s the fact that those who have made the decision know that people will die… What possesses the donor community to intensify the emotional and physical havoc?’ For Lewis and many South African activists, this is not the time for influential donors, politicians and policymakers to argue for HIV austerity measures, or to promote the idea that only ‘responsible citizens’ deserve free access to HIV treatment.

Given the persisting AIDS crisis in so many parts of the world, it would seem that the challenge to AIDS activists continues to be to highlight ongoing HIV treatment needs, including issues relating to drug pricing and intellectual property rights issues, research protocols, and other matters relating to treatment access. Even though HIV is no longer perceived to be an “emergency” by the media, politicians and some donors and governments, AIDS activists perceive a need to persist in keeping this ongoing health crisis on the national and global agenda. But the challenge goes much further than this. It would seem that AIDS activists may increasingly find themselves ensnared within a complex web of contradictions and conundrums. For example, activists advocating for sustainable HIV interventions in the global South are being called upon to acknowledge the need for programme efficiency and financial accountability. Yet, at the same time this efficiency logic could entrap them in arguments about financial austerity that could result in cutting costs and losing lives. So, how will activists be able to straddle these competing demands to cut costs and save lives at a time when there are growing financial pressures to cutback on donor programmes? Mere denunciation of all of this as the evil machinations of neoliberal austerity measures is not likely to lead to the most progressive and sustainable outcomes.

These hard times of financial austerity call for exceptionally dexterous and creative thinking by both scholars and activists. Signs of creative tactical thinking have been evident in the TAC’s shift from a political culture of protests and denunciation of the Mbeki-era, to an increasing focus on policy matters, improving state health services, and issues relating to drug availability and pricing regimes. The changed circumstances of the post-Mbeki era, as well as the global financial crisis and shifting donor funding priorities, called for TAC activists to engage with the more mundane bureaucratic realities of policymaking, health systems, and various health-related techno-scientific matters. Similarly, scholars need to move beyond formulaic critiques and denunciations of neoliberalism and engage in nuanced ways with the contingent and complex realities of AIDS after the exception.

James Ferguson has recently questioned the usefulness of the language of radical denunciation that is so evident in current critiques of neoliberalism. In his recent exhortation for critical scholars to move beyond such sterile critiques, Ferguson draws on Foucault’s conception of “empirical experimentation” as a substitute for moralistic denunciations of capitalism, the state, rights, discipline and so on. For Foucault, the key ingredient for the creation of a “left art of government” is not denunciation but rather conceptual and political creativity and dexterity. It would seem that TAC activists in Khayelitsha, Cape Town may be a few steps ahead of the game by giving substantive content to Foucault’s call for empirical experimentation rather than endless repetition of political dogma and formulae. These activists seemed to have understood the limits of a politics of denunciation in the post-Mbeki era. It would seem that the TAC understood the need to reinvent AIDS activism and critique in a post-Mbeki and post-exception era better than many scholars.

 

References

Ingram, Alan, “After the exception: HIV/AIDS beyond salvation and scarcity.” Antipode, 2012; this article was first published online: 25 MAY 2012.

Ferguson, James. “Towards a left art of government: from ‘Foucauldian critique’ to Foucauldian politics”. History of the Human Sciences 2011 24: 61. The online version of this article can be found at: http://hhs.sagepub.com/content/24/4/61