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 Africa. By fiscal year 2006 that budget (including funding from PEPFAR) had expanded to nearly $1.3 billion, a nearly fivefold increase.35 PEPFAR has dramatically expanded funding for both treatment and prevention in Uganda; for fiscal year 2008, the program accounted for $283 million of the $388 million in Uganda’s budget for AIDS prevention and treatment and provided more than 70 percent of the country’s entire resources for HIV/AIDS treatment and prevention, far outpacing the contributions of the Ugandan government and the UN Global Fund, Uganda’s second biggest contributor to HIV/AIDS programs.36 By all accounts PEPFAR is a program that has redefined HIV/AIDS treatment and care worldwide.
Despite these transformational numbers, PEPFAR was not wholeheartedly embraced by the global AIDS care community. As was noted in this book’s introduction, the most controversial aspect of PEPFAR was that the program reserved one-third of its prevention funding ($1 billion) for abstinence and faithfulness-only programs.37 At the 2004 International AIDS Conference in Bangkok the structure of PEPFAR’s prevention funding drew intense criticism. An editorial in the Lancet described the tense reception at the conference of President Bush’s Global AIDS coordinator, Randall Tobias: “Tobias was distinctly ill at ease and, for a few moments as he left the podium under strong verbal attack, it appeared that he would withdraw from the lecture.”38 Criticism extended from questions about the president’s motives and especially the clear focus that Bush and the program’s terms had placed on the role of religion in the fight against AIDS.39 The Lancet editorial recounts Bush’s speech, in which he touted an ABC approach (abstain, be faithful, and—adding the qualification “when appropriate”—use condoms) as a “moral message” and placed special emphasis on the importance of youth abstinence as an approach that prevents HIV “every time.”40 Many in the world of AIDS prevention distrusted the focus on abstinence, especially as it sought to drive funding away from other programs (in particular, those of condom distribution) that were perceived as less aligned with the Bush administration’s social agenda.41
A Ugandan Christian activist I knew recalled for me his experience at the 2004 Bangkok conference, where he participated in a panel that seemed to dramatize the tensions of the moment. He was only in his early twenties at the time, and this trip—which took him halfway around the world—was the first time he had ever been on an airplane or traveled outside eastern Africa. At the time he was, he admits, unfamiliar with the landscape of international AIDS activism; his experience with AIDS advocacy extended only to his role as youth leader at University Hill Church (UHC), a congregation near Makerere University in Kampala that advocated premarital sexual abstinence. He had been selected as a youth representative for Uganda at the conference and was slated to appear on a panel discussing the role of abstinence programs in HIV prevention. He described to me his initial realization that controversy surrounded HIV prevention methods, especially abstinence:
At that point I wish I knew better. I was in my final year at the university. It was an international AIDS conference. I was in Bangkok, in Thailand. It was my first opportunity to fly. It was really great. One of the greatest things, as a leader, is your story of transformation. So I had my story, you know. This is what had happened, this is what changed . . . I made the decision to abstain,