University of British Columbia Nepal Sickle Cell Project Status Report 2015-2020

ABSTRACT

Purpose of Study In 2015 the University of British Columbia partnered with Creating Possibilities (CP), a charitable organization located in Dang, Nepal. Each year, a team of medical students is sent to assist CP in the long term management of sickle cell disease (SCD) in rural Western Nepal. Due to COVID-19 limitations, we were unable to travel to Nepal this year for the field component of our project. Instead, we took this opportunity to reflect on the project as a whole and create a project status report, outlining the past five years of work. The purpose of this report included summarizing overall project progress, identifying future project directions, and improving communication amongst project stakeholders. Methods Used To create the project status report, our team reviewed all project documents since 2015. We also conducted virtual interviews with previous team leads to clarify questions and fill in gaps. Project progress was assessed by comparing activities completed to date to the project's initial three main objectives. Summary of Results The first objective of characterizing the prevalence of SCD among the Tharu population is currently ongoing. Since 2015, we have conducted large-scale screening of the Tharu population, with 4483 individuals having been screened by our team. Thus far, a hemoglobin S prevalence of 9.3% has been estimated. Our second objective of identifying barriers to SCD management is also ongoing. Since 2016, yearly focus groups and needs assessments have been conducted with community members and health workers. Common themes of barriers included accessibility, financial limitations, and education. Finally, our third objective of implementing sustainable solutions for long term detection and management of SCD still needs to be addressed. Conclusions Screening and needs assessments will continue as we progress toward addressing our first two objectives. Following consultation with experts and a literature review, we have identified a pilot newborn screening program for SCD as the first step in addressing our third objective.