Sickle Cell Disease (SCD) is a life-threatening non-communicable disease (NCD) and is the most commonly inherited blood disorder worldwide. As many as 90% of SCD warriors in sub-Saharan Africa (SSA) die before age five, compared to a 99% survival rate in high-income countries (HIC). Therefore, SCD is not only a public health concern but a global health crisis. Uganda has the 5th highest SCD burden globally, with an estimated 80% mortality rate for under-five children. Vaso-occlusive crises (VOCs), the hallmark symptom of SCD, drive much of the healthcare burden and are frequently used to evaluate the effectiveness of hydroxyurea (HU). For patients taking HU, pain frequency, intensity, and duration are significantly reduced, confirming the great benefits of the medication. Kalangala Health Center IV (KHCIV), designated by the Ugandan MOH as both “Hard to Reach” and “Hard to Stay,” provides care to residents living on a group of 84 islands in Lake Victoria. With the support and collaboration of the Duke Global Health Institute (DGHI) and Duke University, KHCIV has maintained an uninterrupted supply of hydroxyurea (HU) for the past four years. To the best of our knowledge, KHCIV is the only government clinic in Uganda that has achieved such a level of consistency. 

Despite these great milestones, a proportion of SCD patients from Kalangala District continue to experience recurrent VOCs. While several studies have identified access and availability as factors that limit HU’s potential, few studies have examined the role of patient experience, clinical resources, and community-level factors. Our study is uniquely positioned to study barriers beyond access and availability. We employ a theoretical framework approach to illustrate the multi-level factors that can limit HUs’ potential and exacerbate recurrent VOCs (Bronfenbrenner, 1977). In June 2025, the Ugandan Ministry of Health implemented an action plan to integrate SCD care in the chronic disease platforms (Capacity Development Plan for Provision of Integrated Health Services, July 2025). This move will cushion the health system from shocks of donor funding withdrawal and build increased sustainability; however, disruptions threaten KHCIV’s HU achievement and could lead to unfavorable outcomes. Our study examines barriers and proposes interventions that can guide the implementation of the action plan while mitigating unintended adverse outcomes among SCD patients taking HU. Our work builds upon prior achievements by Duke and UNC-Chapel Hill students in collaboration with family and community members, plus the hardworking, dedicated healthcare workers at the KHCIV Sickle Cell Clinic.