Improving HIV public policy and planning through PLWHA involvement: Masihlanganeni, South Africa

Purpose: To describe the development and HIV policy and planning contributions of a PLWHA network in an under-resourced area. Data: Program and policy information from Masihlanganeni and South Africa's Eastern Cape Province. Methods: Year three administrative program review. Results: Masihlanganeni (Let Us Come Together) is a network of PLWHA that facilitates partnerships with government and external stakeholders for HIV policy and program development. Developed in consultation with the Province, in three years it has mounted a series of summits whose recommendations form the basis of ongoing consultation with Provincial government. 500 PLWHA have been engaged in a grass-roots network that works with all levels of government and integrates diverse PLWHA activist and other groups. Supported by Provincial and international voluntary partners, Masihlanganeni has succeeded in acquiring a diverse range of financial support. Though still mostly volunteer, Masihlanganeni has trained a cadre of over 45 PLWHA leaders; increased PLWHA representation on formal governmental structures at all levels; stipended Health Advocates in each district to monitor HIV/ARV care access concerns; facilitated dissemination of critical Provincial and other HIV information throughout the mostly rural Province; participated in community-based research; assisted in strategic social mobilization; and mounted a plan for a local Wellness Centre. Masihlanganeni has become a non-profit organization, anticipating expanded advocacy and service provision roles. Policy Implications: Mashilanganeni has been uniquely successful in providing governmental and non-governmental stakeholders with an effective mechanism for engaging PLWHA in policy and program initiatives. Similar network development in other high prevalence under-resourced areas should be considered.