Abstract:
Abstract: The prevalence of sickle cell disease is high in Africa, with significant public health effects
on the affected countries. Many of the countries with the highest prevalence of the disease also have
poor health care systems and a high burden of infectious diseases with many other competing health
care priorities. Although considerable efforts have been made to implement newborn screening for
sickle cell disease programs in Africa, coverage is still low. Tanzania has one of the highest birth
prevalence of children with sickle cell disease in Africa. In 2015, the country implemented a pilot
project for Newborn Screening for Sickle Cell Disease to assess feasibility. Several efforts have been
made afterwards to continue providing the screening services as well as related comprehensive care
services. Using qualitative methods, we conducted in-depth interviews and focus group discussions
with policy makers (n = 4), health care providers (n = 21) and families (n = 15) to provide an analysis
of their experiences and perspectives on efforts to expand and sustain newborn screening for sickle
cell disease and related comprehensive care services in the country. Thematic content analysis was
used to analyze the data through the framework analysis method. The findings have demonstrated
both the opportunities and areas that need addressing in the implementation and sustainability of
the services in low resource settings. A key area of strengthening is full integration of the services in
countries’ health care systems to facilitate the coverage, accessibility and affordability of the services.
Although the coverage of newborn screening services for sickle cell disease is still low, efforts at the
local level to sustain the implementation of the programs and related comprehensive care services are
encouraging and can be used as a model for other programs implemented in low resources settings
