10 - NGOs & the Evolution of Care

Summary

Just as the nature of the immunodeficiency virus chiefly determined its pattern of expansion, so it also compelled societies to erect particular kinds of defences. Whereas easily transmitted and rapidly fatal diseases like the ‘three-day flu’ of 1918 had demanded brief, urgent, and predominantly medical responses, the years of incubation and months of terminal decline characteristic of HIV created an overwhelming need for long-term care. African governments, impoverished by economic depression and structural adjustment, could not provide this. Instead, late twentieth-century culture offered another model: the non-governmental organisations already active both in global relief work and in many smaller welfare functions in African countries. Along with government bodies, NGOs were largely responsible for preventive work and the support of HIV-positive people during the incubation stage. Initially they also attempted to care for those sick with Aids, but the numbers quickly overwhelmed them and instead this burden fell chiefly on the patients’ families. It was a cruel burden, for in their final months of illness people with Aids needed much intimate and distressing care. Family responses varied, but predominantly they - and ‘they’ meant chiefly women - provided care with a selflessness that was one of the most heroic features of the epidemic. This was not unique to Africa: Aids epidemics everywhere evoked remarkable displays of compassion. What was unique to Africa was the scale of the response in a continent where HIV/Aids was, in this as in other senses, a family disease. Had Africa's family systems been less resilient, the impact of the first Aids epidemic could have been terrible beyond imagining.

The scale and diversity of NGO action defy summary. In 1992 Uganda already had over 600 NGOs involved in Aids work; by 2003 there were about 2,000. Kisumu, the provincial capital of Kenya's heavily infected Nyanza province, had over 200 NGOs and community-based organisations combating Aids in 1999. Senegal was also rich in organisations, over 700 receiving public subsidies during 2004, the same number as those affiliated to Nigeria's Aids programme. South Africa had a vigorous NGO tradition, inherited especially from the anti-Apartheid movement, and counted over 700 bodies engaged in Aids work as early as 1993.