Introduction

In the early 1980s, a mysterious and fatal illness was identified as spreading among otherwise healthy young men in North America and Western Europe. In 1983, the Human Immunodeficiency Virus (HIV) was identified as the cause of Acquired Immune Deficiency Syndrome (AIDS). The modes of transmission, most often sex and sharing of needles, and lack of a cure or vaccine generated widespread panic. By the end of the 1980s it was clear that the virus was present in every region of the world and was particularly rampant in Sub-Saharan Africa. Between 1980 and 1996 (when treatment was introduced), over 6.4 million people worldwide died of AIDS related illnesses. Both states and international institutions failed to respond quickly and

proactively to the early epidemic. Within this governance gap, alliances of people living with HIV/AIDS (PWAs), medical professionals and human rights activists created their own response. By the time states and institutions recognized HIV/AIDS as a global threat, in the late 1990s, CSOs were already engaged in activism and service delivery. Drawing on their lived experience with and responding to the epidemic, they demanded the right to lead the global response. Their participation gained political acceptance with the signing of the Greater Involvement of People Living with HIV/AIDS (GIPWA) principle, at the Paris AIDS Summit in 1994, which committed the 42 states leading the global response to “support a greater involvement of people living with HIV at all levels” (UNAIDS 2007). The exceptional role of CSOs in the global response to HIV/AIDS has been

widely celebrated. The response has been credited with contributing to participatory transformations in global health governance (GHG) and ushering in an era of more legitimate and accountable global health institutions (GHIs) (Nay 2009). Sidibe et al. argue that HIV/AIDS CSO activism has created a

precedent in GHG: “the many governance innovations offered by the AIDS response, mainly driven by people living with or affected by HIV, that have remade the playing field for tackling other global challenges” (2010, 3). Similarly, the editor of The Lancet argues:

AIDS occupies a unique place in the history of health and, in many ways, the AIDS response has “created” the concept and practice of global health – mainly due to the fact that AIDS forged the greatest civil society movement of the past half century.