Building a comprehensive sickle cell disease program in Western Kenya: a decade of experience and growth

Abstract

Background: Globally, approximately 515,000 infants with Sickle Cell Disease (SCD) are born every year. Approximately 80% of these cases occur in Sub-Saharan Africa (SSA) annually, including 14,000 newborns in Kenya. In SSA, 50%–80% of children will die before the age of 5 years due to a lack of comprehensive SCD care compared to 3% in better-resourced settings. The Academic Model Providing Access to Healthcare (AMPATH) SCD Program started in 2010 as a partnership between Moi University, Moi Teaching and Referral Hospital (MTRH), and Indiana Hemophilia and Thrombosis Center (IHTC) with a goal to improve access to comprehensive SCD care by increasing capacity through training, clinical care, research, and advocacy. Findings: The program has trained over 5,000 healthcare workers on different aspects of SCD through face-to-face instruction, virtual training and one-on-one mentorship programs. Early infant screening and support for access to medications like hydroxyurea and antibiotics have been key in improving clinical care. The program has also participated in several research projects and has been a strong advocate for the provision of comprehensive SCD care by the health facilities within the high SCD burden areas in Kenya and the Ministry of Health. Conclusion: The strategies implemented by the program can serve as a template for establishment of SCD care programs in similar resource-limited settings