International Civil Society Activism

The fourth and last reason why African governments have stayed afloat and democracy has not been threatened under the onslaught of AIDS is indeed the most surprising and heartening. Left to their own devices, most African leaders would have followed the Cuban model of AIDS policy—compulsory testing and a denial of rights to those infected. Where such approaches have been possible, for example in armies, this model has more or less been adopted. Every African army that can do mandatory testing, does so, and most of them summarily decommission those found to be HIV positive. But national AIDS programs for the general population have not followed this path. True, stigma and discrimination persist, but official policies are consistently liberal. Civil society organizations are active in AIDS work. Legislation formally grants rights to people living with HIV and AIDS. A remarkable number of senior leaders speak frankly about the disease. And, year by year, the number of functioning democracies in Africa has increased and indicators of civil and political liberties are rising.

The reason for these encouraging developments is that the leadership in AIDS programming has allied with an international network of activists who have succeeded in influencing—and, in many cases, building—international institutions. The epidemic struck at a time of democratic transition and globalization. Partly because the existing institutions, most notably the World Health Organization, were so slow to respond, a new architecture was set up. New organizations, such as UNAIDS and the Global Fund to Fight AIDS, TB, and Malaria, have had their agenda set in significant part by civil society activists. That agenda has included a major focus on human rights, including the right to privacy and voluntary testing. These organizations have also advocated protection of the rights of people living with HIV and AIDS (PLWHA), and participation of PLWHA in making policies that affect their lives, through, for instance, representation on the boards of UNAIDS and the Global Fund. This has been resoundingly successful. Some public health specialists would even argue that it has been too successful—an approach centered on individual rights may be more appropriate for the gay communities of North American cities than for the general population of an African country, where predatory sexual behavior by males is the driving force behind the epidemic. Respect for some of these personal freedoms in Africa merely becomes a cover for perpetuating gender inequities that deepen the vulnerability of women and girls to HIV. The global governance of the AIDS pandemic is liberal, both in its epidemiological individualism and its stress on civil liberties.

Africa’s AIDS activists are globally networked and are part of this international phenomenon. While Uganda’s first AIDS activists focused on mobilizing their local communities, the subsequent leaders of the movement have cultivated ties with international non-governmental organizations, multilateral institutions, and donors. While they may not get through the front door of the national ministries in their own capital cities, they are invited to meetings in Paris, Geneva, and Washington by Medecins Sans Frontiиres, UNAIDS, or the Bill and Melinda Gates Foundation. Finding that the gates of foreign citadels are open to them, and that these geographically distant but more sympathetic institutions have the power of the purse over African governments, activists compel African leaders to take notice.

This is a circuitous accountability, which has the potential to turn the aid encounter into a force for human rights and political liberalism. Most political science analysis on the impact of aid dependence concludes that decreased governmental accountability is associated with increased reliance on foreign aid. During the Cold War, this was one of the major raisons d’кtre for aid—to keep loyal governments in power whatever their citizens thought about it. Well-intentioned aid, famine relief for example, has too often had the similar effect of immunizing a government from the pressures of its citizenry and providing band-aids to problems that demand policy changes. The prospect of aid-for-AIDS dependence could be frightening, with entire nations relying on the largesse of foreign donors for the drugs that keep millions of their citizens alive. But thus far, the way in which the international aid apparatus has become more transparent and accessible means that new tracks of accountability have emerged, leading to new pressures for respect of rights.

The entrenchment of civil society and human rights is an unsung victory for the global AIDS community. This is neither an even nor an assured success; there are still huge problems of denial and stigma to overcome, but this activist revolution has come further and faster than we would have imagined a decade ago. And there is no question that this has had wide ramifications for the protection and promotion of democracy in Africa. The specter of AIDS-prompted governance regression has not occurred.

Activism’s greatest successes have been in the field of treatment. In retrospect, there are reasons that make treatment access the obvious locus for a breakthrough in activist effort: there are constituencies that stand to benefit and can be organized (PLWHA, health professionals), and the responses are concrete and measurable. But the scale and expense of treatment means that even five years ago, the level of today’s access to anti-retroviral therapy was considered an impossible challenge in poor countries. Targets for three million people in the developing world to be on AIDS treatment by the end of 2005 were not met, but the scale-up of treatment has nonetheless been impressive. Most importantly, the tenfold increase in funding for AIDS has changed entirely the landscape of possibilities for global health efforts.

Future Challenges as a Political Task

The next big challenges for AIDS—prevention of HIV infection and care for the sick and orphans—present greater difficulties. The political incentives for action are harder to grasp, as the constituencies are less easy to identify and mobilize, and measurements of success are much more difficult to obtain. HIV incidence is nowhere monitored so it is perhaps unsurprising that reducing it has not, in reality, been a priority for governments or international agencies. The main lesson of the last five years is that astute political engineering is the key to success. Overcoming AIDS and its dire consequences is as much a task for social and political scientists as it is for physicians and epidemiologists.