AIDS in Uganda: An Overview
When Ugandan President Museveni took power in 1986, the country had just emerged from a long period of state violence and repression, and a near total collapse of the economic, political, and social infrastructures of the country. Under the regimes of Milton Obote (1962-1971 and 1979-1985) and Idi Amin (1971-1979), widespread violence and rape, massive displacements of people, and increased economic and political disparities contributed to the loss of over one million lives, heightened insecurity in civil life, and the rapid spread of HIV/AIDS throughout the country (UAC 2004). By the time Museveni claimed power, AIDS constituted a public health crisis that threatened the economic and political security of the country (Ostergard and Barcelo 2005). An analysis of data collected by the Ministry of Health reveals that Uganda’s HIV epidemic has followed three distinct phases since the early 1980s. The first phase was marked by rapidly rising HIV prevalence rates, which peaked in the early 1990s with a national prevalence rate of 18 %, which rose as high as 30 % in some urban areas (UAC 2001). The second phase was a period of rapid decline in prevalence rates between 1992 and 2002 (dropping to 6.1 % in 2002). The third and final phase was one of stabilization between 2002 and 2005, reflecting a ‘mature and generalized epidemic’ with a prevalence rate between 6 and 7% (UAC 2007). However, starting in 2004-2005 (and confirmed via data from 2011), evidence showed that Uganda experienced an increase in prevalence rates among specific populations and an alarming reversal of some of the more ‘successful’ trends of the 1990s (Ministry of Health 2006; Kron 2012). This increase is most often attributed to changing behavioral indicators (such as an increase in multiple concurrent sexual partnerships), greater accessibility to treatment for people living with HIV, and inadequate attention to prevention in terms of both funding and developing effective interventions that address the structural determinants of sexual behavior (personal interviews, 2008; Indevelop 2014). This chapter contributes to this understanding by highlighting the emergence of new global governance structures and strategies for financing and managing HIV/AIDS, which we argue must be taken into account in making sense of the recent reversal of Uganda’s HIV/AIDS success, specifically in terms of entrenching donor and state power as well as undermining the potential of civil society groups engaged in HIV/AIDS programming and/or advocacy.
Although there remains considerable debate among scholars and policymakers about what exactly led to the initial decline in HIV prevalence in Uganda throughout the 1990s (Green et al. 2006), the Ugandan government clearly invested political resources into the country’s early response (Grebe 2009). For instance, it is widely acknowledged that President Museveni expressed unprecedented political will in institutionalizing a national AIDS committee and control program (within the Ministry of Health), mobilizing international resources, and calling on all segments of Ugandan society to get involved in the nationwide response to HIV/AIDS. The President’s openness and willingness to prioritize HIV/AIDS stood in sharp contrast to the policies of most African governments at the time.
In addition to the Ugandan government’s apparent willingness to champion the cause of HIV/AIDS prevention, the improving economic and social conditions and political stability that followed 20 years of civil unrest (1966-1986) provide the broader context for understanding Uganda’s success in this respect. Beginning in the late 1980s, the government began implementing a number of reforms that ostensibly aimed to rebuild the nation and reverse the divisive practices of earlier colonial and post-colonial regimes. These efforts included improving the country’s health and education sectors, providing space for the emergence of independent media and freedom of press, and implementing policy and legal reforms to address gender inequality (Craig and Porter 2006; Tripp 2010; Tamale 1999). Museveni also institutionalized a decentralized local government system (known as Resistance Councils) that was premised on grassroots participation, citizen empowerment, and political accountability (Munyonyo 1999). These improving structural conditions not only served to legitimize Museveni’s regime to the international community and national citizenry (Grebe 2014), but as Parikh notes, ‘helped create an environment that allowed many people greater control over their sexual lives’ (2007, 1199).
These significant structural reconfigurations also underpin a third essential feature of Uganda’s early response to HIV/AIDS: the mobilization of civil society to respond to the epidemic. Although civil society existed during Uganda’s colonial period through informal community associations and missionary-based NGOs, the repressive regime of Idi Amin (1971-1979) outlawed civil society political activities, restricting most associations to the traditional fields of charity, service delivery, and development initiatives (CIVICUS 2006; Kew and Oshikoya 2013), including HIV/AIDS education and care and support. The relative peace and stability of Uganda during Museveni’s regime enabled civil society to flourish, which was further supported by the shifting priorities and funding commitments of international donors and development organizations that, throughout the 1990s, preferred to channel aid to civil society organizations rather than an ‘over-bloated’ state.
From the beginning, civil society groups were at the forefront not only of providing care for and support to people affected by HIV/AIDS, but also shaping public discourse around HIV/AIDS and advocating for social change, notably concerning collective sexual norms that fuelled the spread of HIV/AIDS, gender inequality and women’s lack of human rights, and stigma and discrimination toward people living with HIV/ AIDS (Rau 2006). As the director of a women’s organization for people living with HIV/AIDS explained:
When HIV/AIDS became a real issue in the early 80’s, I would say it took the government by surprise. But one of the things that I think played a key role was coordination and networking [...]. And there was a political wave that created an environment [so that] many people could be free to really parade freely on HIV/AIDS, which I think has played quite a significant role in the fight against HIV/AIDS. (personal interview, 2008)
Much of the work done by civil society actors exemplifies the critical role of social solidarity in Uganda’s early fight against HIV/AIDS, or what Helen Epstein describes as ‘“collective efficacy”; the tendency of people to come together and solve common problems that no one person can solve on his [or her] own’ (Epstein 2001, 3). Hundreds of tiny community- based groups emerged throughout Uganda in the late 1980s and 1990s to care for the sick, educate communities about HIV/AIDS, challenge existing sexual norms, and address AIDS-related stigma. For instance, The AIDS Support Organization (TASO) was started in 1987 by a small group of 16 men and women, many of who were living with HIV. The founders based their work on the core values of inclusion, equality, human dignity and integrity, duties of care, and compassion for others (Ssebanja 2007) and relied ‘heavily on pre-existing interpersonal networks to build the movement’ (Grebe 2014, 8). Moreover, under President Museveni’s early regime, the women’s movement flourished, giving rise to a new generation of female AIDS activists to fight for women’s rights and better care and support for people living with AIDS.
Unlike other countries in East and Southern Africa, Uganda did not follow a set of donor-led or internationally approved HIV prevention strategies, but rather mobilized civil society networks to work together, designing and translating HIV prevention activities into communities’ own socio-cultural contexts of understanding and experience (Epstein 2007). Prevention messages with local resonance, such as ‘Love Carefully’ and ‘Zero Grazing’, circulated widely throughout the country to encourage people to reduce casual sexual encounters with multiple partners. Information about AIDS was spread by word of mouth through political speeches and personal networks, including health educators, friends and family, local resistance committees, musicians, women’s groups, religious leaders, theatre groups, and village meetings (Low-Beer and Stoneburner 2003), as well as through posters, pamphlets, billboards, newspapers, and radio broadcasts (personal interviews, 2008). By the early 1990s, nationwide conversations about HIV/AIDS and sex-related topics were under way, reinforcing the indiscriminate nature of AIDS and the collective experience of risk: everyone was at risk, regardless of socio-economic status, age, ethnicity, gender, marital status, or political power.1
The point we wish to emphasize here is that while the Ugandan government was certainly a leading actor in responding to HIV/AIDS, its response was shaped by, and supportive of, the relatively autonomous grassroots networks of civil society groups (see Stoneburner and Low- Beer 2004) or, as Helen Epstein describes it, ‘a very African process of community mobilization, collective action and mutual aid’ (2007, 3). As an official from US Agency for International Development (USAID) explained in an interview: ‘Uganda’s early success with HIV/AIDS was the result of local grass-roots movements that made AIDS into an issue because they were seeing people dying in such large volumes that they had to do something in terms of care and support but also in the area of prevention’ (personal interview, 2008). Thus, Uganda’s civil society response emerged locally from the shared realities and consequences of AIDS and the extreme hardships produced by war. It relied on personal and social networks to communicate information about AIDS (Stoneburner and
Low-Beer 2004; Allen and Heald 2004) and encouraged all Ugandans to talk frankly and openly about the epidemic and its far-reaching consequences for everyone (not just those deemed ‘high-risk’); it provided clear and culturally grounded prevention messages that prioritized reducing multiple concurrent sexual partnerships; and it advocated for collective obligations and practices of care and support for people living with and affected by AIDS.
As we argue below, significant political and institutional changes have taken place both globally and nationally in the last two decades, changes that fundamentally reconfigure the position of civil society groups engaged in the fight against HIV/AIDS, especially those small, underresourced civil society organizations regarded as ‘lacking’ the technical or professional capacities required today by international donors, or human rights advocacy groups that seek to challenge dominant donor or government agendas.