The KalaCORE project is a UK Department for International Development (DFID)-funded initiative to eliminate visceral leishmaniasis (VL) in Bangladesh, India, and Nepal, and to control VL in Ethiopia, South Sudan and Sudan. Aimed at improving access to early diagnosis and complete treatment, KalaCORE relies on baseline data to guide decision making around support for VL control programmes. The limited existing literature on treatment seeking and costs of VL illness points to long delays in diagnosis and treatment. However, with recent improvements to diagnostic tests and treatment regimens, the accuracy of those data is now in question. New surveys are needed to identify programmes’ priority needs for improving patient disease management and access to care. These are cross-sectional surveys of VL patients recently treated at 46 VL treatment facilities in endemic areas of Bangladesh, India, Ethiopia, and Sudan between February and September, 2016. The study concludes that despite a greater focus on the disease, VL illness is still diagnosed late and places a substantial economic burden on patients and their households. This is largely due to the financial costs incurred through wrong diagnosis and loss of income to patients and/or their caretakers.