personal sentiment that when deployed enabled the social transformation of needy communities and individuals into accountable, responsible—but not “entitled”—persons.
These ideas were informed not only by a neoliberal orientation to governance but also by a distinctly Christian understanding of the nature of compassionate sentiment. For American Christians, Bush’s language resonated strongly with familiar lessons about charity and the transformational effects of what evangelical Christians call the “selfless love” that characterizes demonstrations of mercy for the poor and suffering. Evangelical and born-again Christians believe that compassion “invokes an ideal of empathetic, unconditional benevolence,”27 the demonstration of care in a context in which it may be least expected. Compassionate acts are selfless gifts but, perhaps paradoxically, they also engender an expectation of evidence of the transformational power of God’s love. As Omri Elisha has discussed in his study of American evangelicals in Tennessee, charitable compassion is dialectically linked to an ideal of “accountability,” the expectation that recipients of care demonstrate or reflect godly virtue.28 The gift of compassion is on the surface understood as an act of selfless mercy, but it is also a gift capable of radical change, affecting personal conduct and, by extension, the moral fabric of society. In the eyes of conservative Christians at the turn of the twenty-first century, domestic welfare programs were redeemed by their transformation into programs of individual and community charity that were driven by the personal sentiment of compassion. Compassion in this American context was believed to address the problems of state welfare not only because the state became more efficient but because compassion combined care with the unstated expectation of personal change among recipients. A sense of empathy generated such Christian compassion, as did the possibilities for self-transformation that such a worldly (and spiritual) gift was thought to enable. By applying compassion to his global political agenda Bush signaled a similar emphasis on the transformational power of humanitarian mercy.
The idea that compassion was a transformational gift, one that engendered accountability in needy recipients, was a powerful tool in enabling the American conservative embrace of AIDS relief work, and for Bush’s evangelical base this idea suddenly brought popularity to AIDS as a cause. Compassion was a sentiment driven not only by moral obligation but also by the “moral ambitions” for social change that extended from American ideals of volunteer and humanitarian work.29 This was an orientation to charity and donor aid that was shaped in particular by evangelical Christian notions of what a demonstration of compassion meant and what response it should invoke. As I noted above, compassion in this instance was embedded not only in an idea of ethical obligation to those suffering but also in the notion of the work God’s love does for and on the suffering subject. In American endeavors to show mercy, there was a parallel expectation that subjects would become accountable and empowered in return.
The language of compassion placed the onus on recipients of aid to demonstrate the transformational effects of their care. In the case of PEPFAR, such demonstrations were closely linked to an expectation that disease risk could be self-managed. If subjects of aid became more accountable for their behavior, especially by exhibiting better self-control, the forward march of the AIDS epidemic could be stalled. The years preceding and following PEPFAR’s introduction in 2004 saw the growing influence of the language of “behavior change,” an exhortation that encompassed a number of conduct-related prevention strategies. It became a popular concept for the Bush administration because of the ways it seemed to reinforce the sentiment behind the shift toward compassionate accountability as a key aspect of governance. Behavior change was celebrated as a strategy that emphasized individuals’ own power to control their exposure to disease risk; if they could change when and with whom they had sex, and if young people could delay sexual debuts, AIDS could, in theory, be prevented.
For the remainder of this chapter I turn to the debates that surrounded PEPFAR’s initial funding by the U.S. Congress in 2003 and the introduction of it in 2004, tracing the emergence of behavior change as a comprehensive prevention strategy and the contested meanings attributed to the term. Of particular interest are the ways in which compassion and behavior change transformed how Ugandans addressed and responded to AIDS. By 2004, when PEPFAR was implemented, individual actors, rather than communities, were made responsible for managing their own AIDS risk. As I will discuss, this precipitated a remarkable shift in the shape of Ugandan small-scale grassroots activism. I turn first to the global context and to the debates surrounding the funding for AIDS prevention and treatment that preceded PEPFAR’s introduction.
PEPFAR, and Global Response
At the 2004 International AIDS Conference in Bangkok, Thailand, President Bush’s proposal to spend $15 billion on global AIDS programs garnered widespread attention; the program’s scope was radical by any interpretation. As recently as 2001 Peter Piot, the executive director of the Joint United Nations Programme on HIV/AIDS (UNAIDS), had confronted the United Nations’ special session on HIV/AIDS with dire statistics outlining the extent of the global epidemic and the anemic response that donor nations had demonstrated to date. Piot spoke of the “collective shame” that marked inaction on the part of the world’s wealthy nations and their responsibility to the dying in poorer ones.30 That year international attention had focused on the expansion of the Global Fund to Fight AIDS, Tuberculosis and Malaria, which UN secretary-general Kofi Annan publically supported with his own personal pledge of $100,000. The Bush administration responded with a pledge of $200 million to the fund, with the stipulation that the UN project focus attention on prevention of HIV infection rather than treatment of AIDS.31
Global access to treatment had been a controversial issue at the International AIDS Conference held in 2000 in Durban, South Africa. Beginning in 1995, multidrug treatment with antiretrovirals had been shown to adequately control the replication of the HIV virus in patients. Antiretroviral (ARV) therapy had radically altered AIDS treatment in the West, transforming the virus into a chronic health problem rather than a death sentence, but treatment was expensive and complicated, demanding regular medical supervision to manage the high occurrence of side effects and the ever-present risk of developing resistance to some or all of the first-line treatment drugs. Detractors asserted that it was simply too complicated and too costly to provide treatment to the millions of HIV-positive persons living in resource-poor countries; activists countered that poor people were wrongly perceived as unable to follow the complex regime that ARV treatment demanded. Others lambasted the pharmaceutical industry for resisting the inexpensive reproduction of ARV drugs in generic form, a tactic that had been adopted by Indian drug companies and successfully used by the Brazilian government to facilitate its national treatment program, which had begun in 1996.32 Limited access to treatment in the late 1990s and early years of the twenty-first century created a dire landscape of AIDS care, with those living in Western nations mostly assured of a life living with AIDS and those in poorer countries condemned to death. Miriam Ticktin’s study of French immigration policies and Vinh Kim Nguyen’s study of HIV treatment clinics in West Africa during this period describe the effects of such stark inequalities.33 Access to treatment—either through international migration or through a petition to receive the limited aid of a donor agency—necessitated a triage approach to care in which the scarcity of resources demanded that health care workers evaluate need and suffering and decide on those most deserving of help.
It was into this environment that President Bush introduced PEPFAR. In contrast to a scenario of limited resources, of UN officials chiding donor countries to make donations for AIDS relief in the hundreds of millions of dollars, PEPFAR represented an infusion of cash of unprecedented proportions, with the vast majority of that money earmarked for treatment. The initial program pledge of $15 billion was to be divided between fifteen nations identified by the Bush administration as most affected by the epidemic, a list that included Uganda and was heavily focused on nations in sub-Saharan Africa.34 Four-fifths of the money was directed toward treatment, a sum that immediately transformed debates over ARV access. To give some sense of the size and scope of the initial program, in fiscal year 2002—the year before PEPFAR was initiated—the U.S. government spent a total of $287 million on AIDS relief in
