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Civil society and HIV

HIV affects people most when they don’t have access to information, services, protection for their rights, or when they can’t act freely within their environment. Civil society is made up of small and large associations of people, coming together to draw attention to these injustices, to try to change structures and societies, and to provide assistance for the marginalised and the vulnerable where public or private services cannot. The Alliance is helping to develop new and challenging ways of working to strengthen civil society for HIV, on a scale that has never been attempted before.

The role of civil society

Most often, it is the people affected by HIV that best appreciate the causes and consequences of the epidemic and the need for change. Yet the community perspective is poorly represented in most health programmes, national policies and global strategies. The challenge is for people to come together, through associations, organisations and representative bodies to share their concerns and voice their opinions. It is through such independent, non-governmental structures that civil society can best influence HIV policies and programmes.

Civil society can also play a role in providing basic services and assistance. In many countries, public services and safety nets for health and welfare provision are weak, or almost non-existent. In such cases, it falls to household and family members and community institutions to bridge the gap. For example, it was estimated that out-of-pocket expenses represent 93% of total health expenditure on AIDS in Rwanda, with most households relying on churches, family and friends for assistance[1]. Given the urgency of HIV, support for civil society structures may be the only way to provide assistance for many people coping with the impact of the epidemic.

Civil society also offers powerful ways of ensuring inclusion. HIV, by its very nature, affects the poorest, weakest and most marginalised in society, particularly in countries where the epidemic is concentrated within specific population groups. HIV also creates further stigma and discrimination for those that it affects. Mutual support groups set up by members and peers within a community are often most successful in providing services to that community and in challenging stigma in empowering ways. It is through such groups that civil society can play a vital role, both for focused prevention and for targeted work in general epidemics.

Civil society organisations have already had a number of successes in:

• demanding that inactive governments take action regarding HIV
• taking the lead in initiating, developing and delivering innovative responses to HIV
• setting the HIV agenda at the international level
• calling pharmaceutical companies to account.

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