ABSTRACT
Non-governmental organisations (NGOs) have increasingly assumed more responsibilities in supporting policymakers since the early post-colonial period in Sub-Saharan Africa (SSA). As the economic conditions of most countries in the region deteriorated from the late 1970s onwards, NGOs have become even more crucial in the health sector. The trajectory of interventions in combating sickle cell disease (SCD) has similarly followed the same pattern. Experts have questioned the optimality of these interventions by NGOs and the viability of the framework that situates the relationship with policymakers. In this chapter, we argue that there is potential for both parties to do much more. First, there is a need for a paradigm shift from seeing NGOs as just entities that provide isolated support in the fight against SCD, to seeing them as strategic partners that play a critical role in supporting the equitable provision of health care for SCD patients. From this lens then, NGOs can overcome funding and manpower limitations through strategic collaborations and partnerships that will make them more influential partners that can shape policy and keep the fight against SCD at the top of the continent's health agenda. In this chapter, we examine the historical evolution of the framework for setting health agenda in SSA, exploring the current landscape and trends of SCD policy, while making recommendations for the future. The ability to overcome the identified constraints has huge ramifications for SCD patients, policymakers, the NGOs and the overall healthcare system.
