The Role of NGOs in HIV/AIDS Agenda Setting

There is surprisingly little information available regarding the role of NGOs in the agenda-setting process regarding HIV/AIDS.

The Global Fund -- and independent organization that is affiliated with UNAIDS -- notes that:

From the beginning of the HIV/AIDS pandemic in the early 1980s, civil society became the driving force in drawing public attention to the impact of HIV/AIDS on their families, friends and communities. This was achieved through targeted advocacy campaigns aimed at key decision-makers and governments, demonstrating the necessity for action and treatment as the number of individuals infected and dying rose at an alarming and seemingly un-abating rate. Eventually civil society was able to gain international commitment and resources from governments and multilateral organizations to combat HIV and AIDS. Global resources to fight HIV/AIDS increased from approximately US $2 billion in 2001 to around US$ 8 billion in 2006. (NGOs and Civil Society, The Global Fund)

However, it remains vague exactly what these "targeted advocacy campaigns" were composed of in terms of strategies, and who exactly these early NGOs and civil society groups were.

It appears that most of the "NGOs" involved in early HIV/AIDS-related work were grassroots organizations set up primarily for education and health service delivery to infected individuals and at-risk groups. The AIDS Action Council notes that, domestically, faith-based organizations such as the Metropolitan Community Church of San Fransisco, the Glide Memorial Methodist Church (also in San Fransisco), and Multifaith Works, were vital in the early response to spread of AIDS within the U.S. (Policy Facts: Faith-Based and Community Response to HIV/AIDS)

AIDS Action themselves was formed in 1984 in an attempt to unify these organizations.  On their website, they note that

in response to the federal government's seeming indifference, groups of volunteers organized at the local level to educate their communities on HIV prevention, to care for those living with the virus, and to grieve for those lost to AIDS-defining conditions. Yet the need remained for a national voice of authority, compassion, and reason to engage and motivate our elected officials and our country. With this in mind, a handful of the nation's first and largest community-based AIDS service organizations came together to create this voice, which they called AIDS Action.

AIDS Action Council, one wing of the organization, has been specically involved with lobbying for effective legislation to address the prevention and treatment needs of the HIV/AIDs community.

On the international level, the International AIDS Alliance was established in 1993, and served as an intermediary organization working with other NGOs, governments, the UN and other international bodies, as well as individual donors and grassroots community organizations. Themselves a collection of nationally-based organizations, they focus on the needs for action in developing nations, and has done policy advocacy work as well as providing funding for grassroots organizations providing prevention and treatment.

It appears that the majority of NGOs working on HIV/AIDS were pre-occupied in simply providing service to those who were being ignored by their governments and existing medical establishments. Over time, larger umbrella organizations such as AIDS Action and the International AIDS Alliance sprung up to unify these groups, secure funding for their work, and lobby for more effective policies (primarily to local governments but also to international bodies such as the UN).