As a clinician and health science researcher, I have noticed with dismay the unsettlingly high under-five mortality rates associated with sickle cell disease (SCD) in sub-Saharan Africa.

Even though standard public-health care packages, including pre-test counseling and carriers for sickle cell hemoglobinopathy, are available and in use in middle-and high-income countries over the past 50 years. My professional partnerships and research initiatives in the West African nation of Sierra Leone are efforts to reduce this global health disparity gap. SCD-affected Sierra Leonean citizens struggle with decayed healthcare infrastructure following a decade-long, brutal civil war that was soon thereafter followed by the Ebola epidemic. Nearly 90% of SCD-affected Sierra Leone children younger than five years of age perished during this period. These realities compelled me to establish local and international partnerships, found a registry, and enroll 2500 Sierra Leone SCD-affected individuals. Our model SCD clinic delivers care to 120 children, and our alliance with local support groups conducts SCD advocacy, education, and awareness campaigns in the community.

Our collaboration and partnerships between the University of South Florida, Augusta University, and Jericho Road Community Health Center in the United States; and the University of Sierra Leone - College of Medicine and Allied Health Science, National Midwifery School, Sickle Cell Carers Awareness Network, and SickleSmart Foundation in Sierra Leone informed the Sierra Leone Sickle Cell Data Collection (SLSCDC) Project, a PEN-PLUS initiative. The SLSCDC project is a 5-year pilot research and clinical program to collect screening data and management of sickle cell disease in pediatric populations. The program goal is to introduce standardized practices for early diagnosis of sickle cell disease, including reproductive genetic counseling, point-of-care screening, collection of sickle cell disease (SCD) screening and diagnostics data, and the introduction of early intervention therapies (such as penicillin prophylaxis and vaccinations) to decrease childhood mortality rates. The combination of a high prevalence of sickle cell trait, high incidence of annual SCD births, and significant segment of the country’s young population approaching marriageable age and childbirth, and a fragile health care system makes urgent the need for public health programs aimed at curtailing the incidence of SCD births. The interventions that the SLSCDC project proposes are designed to raise awareness about the health and clinical implications of SCD while contributing to primary care health systems strengthening and capacity building.

Our two National Institutes of Health-funded research projects are designed to build nursing workforce capacity in Sierra Leone for early diagnosis and clinical management of sickle cell disease across the lifespan. We propose to upskill and train nurses in two tertiary hospitals across Sierra Leone to perform genetic counseling services and early diagnosis of children with SCD with bedside testing and provide linkage to follow-up care. Our other recently funded (Novo Nordisk) Expanding Access to Sickle Cell Disease CarE project in Sierra Leone (The EASEL Pilot Implementation Study) will provide needed resources for the development of five new nurse-led sickle cell clinics to complement our extant pediatric SCD program and will increase opportunities for individuals living with SCD in Sierra Leone to receive uninterrupted access to basic preventative ambulatory care to reduce overall mortality and experience improved quality of life. The EASEL project will support Sierra Leonean nurses with the technical capacity to manage anemic, infectious, and vascular complications in individuals with an established SCD diagnosis. Ultimately, our long-term clinical and research goal is to establish pediatric and adult patient cohorts in Sierra Leone and the USA for disease natural history and omics investigations of sickle cell disease presentations.