ABSTRACT
Newborn screening (NBS) for sickle cell disease is fundamental for establishment a comprehensive sickle cell programme in any country. While universal NBS has been implemented in high-income countries e.g. USA, UK as well as Brazil, this is not the case for the majority of low- and middle-income countries where over 80% of the disease occur. This chapter traces the history This is despite the fact that NBS followed by penicillin prophylaxis has been shown to reduce mortality by over 70% and improve quality of life. A review of NBS programmes in 6 African countries identified barriers and enablers for implementing SCD screening and emphasised the importance counterpart funding from governments, engagement with communities in order to achieve a sustainable and scalable programme in Africa. The paper identified four themes – i) governance and structure, ii) funding, ii) technical and cultural barriers, and iv) enhancers for achieving sustainable NBS programmes in Africa. In this chapter the authors have provided a historic perspective and the evolution of NBS for SCD globally. The importance for national programmes to comply with the WHO recommendation Wilson and Jungner 10 steps of a screening programme and ensure that there is an agreed policy on whom to treat as patients and the cost of case-finding (including diagnosis and treatment of patients diagnosed) should be economically balanced in relation to possible expenditure on medical care. The practical aspects of providing adequate diagnostic platform with sufficient technical support is emphasised. The authors have proposed better alignment of donor programmes within countries to ensure better coordination to avoid the tendency for researchers working in silos. It is necessary that SCD programmes in Sub-Saharan Africa and other LMICs countries implement sustainable national screening programmes that are embedded in the public health systems, affordable and accessible to the majority.
