Influence of health rights discourses and community organizing on equitable access to health: the case of HIV, tuberculosis and cancer in Peru

BACKGROUND: The right to health is recognized as a fundamental human right. Social participation is implied in the fulfillment of health rights since Alma Ata posited its relevance for successful health programs, although a wide range of interpretations has been observed for this term. While Peruvian law recognizes community and social participation in health, it was the GFATM requirement of mixed public-civil society participation in Country Coordination Mechanisms (CCM) for proposal submission what effectively led to formal community involvement in the national response to HIV and, to a lesser extent, tuberculosis. This has not been the case, however, for other chronic diseases in Peru. This study aims to describe and compare the role of health rights discourse and community involvement in the national response to HIV, tuberculosis and cancer. METHODS: Key health policy documents were identified and analyzed. In-depth interviews were conducted with stakeholders, representatives of civil society organizations (CSO), and leaders of organizations of people affected by HIV, cancer and tuberculosis. RESULTS AND DISCUSSION: A health rights discourse, well established in the HIV field, is expanding to general health discussions and to the tuberculosis (TB) field in particular. Both HIV and TB programs have National Multisectoral Strategic Plans and recognize participation of affected communities’ organizations. Similar mechanisms are non-existent for cancer or other disease-focused programs, although other affected patients are starting some organization efforts. Interviewees agreed that reaching the achievements of HIV mobilization is difficult for other diseases, since the HIV response was modeled based on a global movement with strong networks and advocacy mechanisms, eventually succeeding in the establishment of financial sources like the GFATM. Nevertheless, organizations linked to cancer and other diseases are building a National Patient Network to defend health rights. CONCLUSIONS: There are new efforts to promote and protect health rights in Peru, probably inspired by the achievements of organizations of people living with HIV (PLHA). The public health sector must consolidate the participation of affected communities’ organizations in decision-making processes and implementation of health programs. PLHA organizations have become a key political and social actor in Peruvian public health policy.