Eliminating invisible deaths: the woeful state of global rabies data and its impact on progress towards 2030 sustainable development goals for neglected tropical diseases

Abstract

Like other neglected diseases, surveillance data for rabies is insufficient and incompatible with the need to accurately describe the burden of disease. Multiple modeling studies central to estimating global human rabies deaths have been conducted in the last two decades, with results ranging from 14,000 to 74,000 deaths annually. Yet, uncertainty in model parameters, inconsistency in modeling approaches, and discrepancies in data quality per country included in global burden studies have led to recent skepticism about the magnitude of rabies mortality. Lack of data not only limits the efficiency and monitoring of rabies elimination strategies but also severely diminishes abilities to advocate for support from international funding agencies. Meanwhile, the most vulnerable communities continue to suffer from deaths that could have been prevented through more robust reporting. The Zero by 30 global strategy to eliminate dog-mediated human rabies by 2030 recommends endemic countries adopt the intersectoral approach, Integrated Bite Case Management (IBCM), as a cost-effective method to enhance surveillance. However, effective implementation of IBCM is impeded by challenges such as limited capacity, resources, knowledge, skills, and attitudes toward compliance. To address this, the World Health Organization and United Against Rabies Forum have developed several open-access tools to guide national control programs in strong data collection practices, and online data repositories to pragmatically streamline reporting and encourage data sharing. Here, we discuss how current and future initiatives can be best employed to improve the implementation of existing surveillance tools and prioritization of effective data reporting/sharing to optimize progress toward 2030 elimination.