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The Next Step: Civil Society Mobilization in Africa’s AIDS Fight
14 January 2008
CSIS Africa Policy Forum

In the past seven years, the world has witnessed at least three hopeful trends in the fight against HIV/AIDS in Africa: (1) funding for AIDS prevention, care, support, and treatment programs has reached an all-time high; (2) the HIV prevalence rate has declined in some countries; and (3) most African governments have developed AIDS strategies and policy-making institutions. While these are important accomplishments, we must now ask: “How can the positive momentum of these AIDS efforts be sustained?” Increased civil society mobilization and AIDS advocacy is essential to capitalize on these developments.

Financing for global AIDS programs has risen from $300 million in 1996 to $10 billion in 2007. Despite activists’ fears that AIDS would lose its political appeal, bilateral and multilateral donors continue to allocate resources. In its 2008 omnibus spending bill, the U.S. Congress approved $5 billion, $1.2 billion more than last year, for the President’s Emergency Plan for AIDS Relief (PEPFAR). It seems certain that Congress will reauthorize PEPFAR this year, and at least double its funding to $30 billion for the next five years. These bilateral and multilateral resources have been crucial for increasing access to antiretroviral therapy for thousands of HIV-positive Africans and for providing support and care to millions affected by HIV/AIDS.

There are tentative signs that the programs these funds support are having some impact in reducing new HIV infections. On World AIDS Day 2007, UNAIDS lowered its estimates for the number of people who are HIV positive globally. UNAIDS reports that roughly 33 million people are HIV-positive, compared to 40 million the year before. In one sense, the new numbers were not evidence of success in the AIDS fight, since they resulted from better data collection and increased data availability. On the other hand, the new figures demonstrated that in several countries, the occurrence of new AIDS cases peaked in the late 1990s; they also illustrated declines in prevalence in Zimbabwe, Botswana, Kenya, and Tanzania. UNAIDS surveys also show evidence of the types of behavior change (such as fewer sexual partners and increased condom use) that are needed for lasting declines in HIV prevalence rates. Even with these signs of progress, however, an estimated 2.5 million people were newly infected with HIV in 2007, and 2.1 million died of AIDS-related causes.

The establishment of national AIDS strategies, national AIDS councils, and country coordinating mechanisms in most African countries is another positive development in the AIDS fight. Devising a national AIDS strategy necessitates the messy process of building consensus and hearing donor, government, and civil society voices. Even though this process has often been donor-initiated, as one Zambian AIDS activist recently explained, the long consensus-building experience can foster the legitimacy needed to sustain interest in AIDS programs. National strategies have led to the creation of decision-making institutions, which advise, oversee, monitor, and recommend policies on everything from AIDS treatment protocols to HIV testing procedures. While the power and independence of such bodies varies greatly across Africa, they are an important step in institutionalizing the AIDS issue into the larger political system. Similarly, because these decision-making bodies often apply for and allocate Global Fund grants and donor monies, they can access essential resources to support national AIDS strategies.

With these first steps of greater funding, institution building, and some resulting successes in place, it is now time to increase efforts to mobilize civil society in AIDS advocacy. Civil society groups must help shape the specific details of how each country addresses AIDS. We already know that community-based organizations (CBOs), faith-based organizations (FBOs), and other civil society groups play an important role in fighting AIDS. In Zambia, for example, church-related organizations provide the majority of care and support services to people with HIV/AIDS. Civil society organizations, such as women’s groups, labor unions, and youth leagues, educate individuals about HIV prevention. PEPFAR and the Global Fund have acknowledged these groups’ contributions and provided them with funding, though usually funds are given to a multinational NGO or government ministry, which then allocates money to local civil society organizations.

While care, support, and prevention activities are crucial, civil society must mobilize to influence the political debates about resources and priorities. Addressing AIDS raises numerous questions. How will antiretroviral therapy be allocated in a particular country, given the possibility that there may not be sufficient resources to treat all who need it? How can rural communities be better incorporated into national AIDS service provision? How should a specific country interpret and enforce laws to combat AIDS discrimination? While some civil society organizations, such as South Africa’s Treatment Action Campaign, have contributed to political debates on these and other issues, many African civil society associations lack resources and staff to voice their opinions. Their attempts to coordinate efforts can be haphazard and limited by poor communication, leadership competition, or state capture. For some organizations, AIDS deaths and AIDS-related illnesses among their members have meant they have neither time nor energy to engage in these political discussions.

Perceptions about politics, AIDS, and advocacy also matter. Often citizens do not view AIDS as a political topic. According to Afrobarometer surveys in twelve African countries between 1999 and 2006, unemployment is the most important problem that citizens think their countries face. While health (including AIDS) is second, fewer citizens prioritized health in 2005 than in 2002 (28% versus 33%). (See Afrobarometer Working Paper no. 60 www.afrobarometer.org). In her dissertation research among AIDS organizations in Mozambique, Kenly Fenio of the University of Florida finds that even among HIV-positive people, the disease is not viewed as a political issue. As a result, candidates for office do not pay much attention to AIDS (or health) in campaigns, even in countries with high HIV prevalence levels. The AIDS stigma, sexual practices associated with HIV transmission, and the fact that for many years an AIDS diagnosis meant certain death have pushed the disease to the private realm, making civil society advocacy more complicated.

Even organizations that directly experience the effects of HIV/AIDS, because members are ill or through increased demands for their services, often do not perceive that they should engage in political mobilization on AIDS. For example, while FBOs provide many services to those affected and infected with AIDS, they may hold back from advocating for policies and resources for the disease. Seeing the realm of politics as “dirty” or “too worldly,” many FBOs prefer to focus on service provision or HIV education. Many women’s organizations, youth leagues, and CBOs have not mobilized to shape political choices around AIDS, sometimes out of fear that direct advocacy is too adversarial. For some, advocacy has the potential to draw lines in the sand and cut off avenues for dialogue and consensus building. Models of mobilization used by western AIDS activists or the Treatment Action Campaign have not found much support in Zambia, Botswana, or Ghana. Instead, AIDS advocates have struggled to define methods that work in the political debates over AIDS.

Despite such obstacles, civil society activism is essential to hold African governments accountable for their promises for AIDS resources and programs. International NGOs and donors cannot play this watchdog role effectively “on the ground,” but civil society groups can. Because local organizations mobilize in a specific national context, they can fight for particular concerns that affect their country. AIDS experts assert that each country’s epidemic is unique: sub-populations are affected in different ways, and countries often face multiple epidemics. This means, for example, that some countries must pay greater attention to prevention among sero-discordant couples, while others must allocate more funds to orphan care. Local organizations can call for context-specific, nuanced AIDS programs; something that donors with their broad approaches to AIDS often cannot do.

Civil society mobilization has additional positive outcomes, which are less apparent but also needed for long-term success in the AIDS fight. AIDS organizations usually do more than advocate; they provide treatment literacy and health information to citizens. These efforts increase citizens’ understanding of and responsibility for their own health, a positive outcome that has been evident in western health movements and the Treatment Action Campaign. Organizations that advocate on AIDS may provide support to individuals and help them sustain behavior changes such as having fewer sexual partners, delayed sexual debut, or condom use. Experts increasingly assert that such changes are necessary for the long-term decline of HIV prevalence rates. As Helen Epstein wrote in November in the Mail & Guardian, “Sexuality is shaped by society… behavior change is a collective act, not one of individuals acting alone.” In Uganda, for example, community organizations have provided information on HIV transmission and served as a support network to curtail risky sexual behavior, particularly among youth. While citizen empowerment and support for behavior change through civil society mobilization is only one component in the AIDS fight, it should not be ignored.

Because AIDS is unlikely to be eradicated soon, and because international interest in the disease has historically waxed and waned, it is crucial that civil society organizations keep African governments’ attention focused on the AIDS fight. Bilateral and multilateral donors can help empower civil society in this political process. Local associations consistently highlight their need for resources, particularly without onerous strings attached. FBOs, CBOs, and AIDS groups in Zambia all complain that U.S. grants require them to use money inefficiently; instead of buying cheap computers, for example, they must rent more expensive equipment from American companies. Donor governments (or the multinational NGOs that are their primary partners) must provide local organizations an equal voice and the political space in which to set their own priorities. Partnership must become a reality, not a buzzword. Additionally, while the Global Fund, PEPFAR, and other bilateral donors have recognized the need to strengthen human capacity in health clinics and government ministries, they have paid less attention to augmenting this capacity in local organizations. Civil society groups involved in the AIDS fight need well-trained bookkeepers, community organizers, and grant writers; and these individuals should receive some remuneration for their contributions. This is particularly true in many African countries, where unemployment and poverty are pervasive.

Greater civil society mobilization to fight AIDS is not a quick fix. Mobilization takes time, effort, and a commitment to incorporating the most affected and impacted Africans into the political debates over AIDS priorities. And, of course, such mobilization is no replacement for building needed health care infrastructure, training doctors, purchasing AIDS drugs, and conducting HIV tests. But, if we hope to capitalize on the small successes of the past few years—increased financial commitments, some country-level declines in HIV prevalence, and the establishment of national AIDS institutions—civil society must be further mobilized and empowered for the long-term fight against AIDS.


Amy S. Patterson is associate professor of political science at Calvin College in Grand Rapids, Michigan. She is the author of The Politics of AIDS in Africa (2006) and edited The African State and the AIDS Crisis (2005).

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