Trusted Sickle Cell Education

Sickle cell disease (SCD) is one of the most common inherited blood disorders globally and remains a major cause of childhood illness and preventable death, particularly in low- and middle-income countries. It occurs when a child inherits abnormal haemoglobin genes from both parents. The condition leads to the production of red blood cells that can become rigid and sickle-shaped, block blood vessels, and cause severe pain, chronic anaemia, infections, stroke, organ damage, and premature death (World Health Organization, 2025).

The global burden is substantial. In 2021, an estimated 7.74 million people were living with SCD worldwide, and about 515,000 babies were born with the condition. Nearly 80% of these births occurred in sub-Saharan Africa, making the region the centre of the global SCD burden (GBD 2021 Sickle Cell Disease Collaborators, 2023; World Health Organization, 2025).

In high-income countries, newborn screening, penicillin prophylaxis, pneumococcal vaccination, parental education, and early linkage to comprehensive care have greatly improved childhood survival. This progress has not been fully replicated in many African settings, where many affected children still die without a confirmed diagnosis or access to basic preventive care. WHO Regional Office for Africa estimates that 50–80% of infants born with SCD in parts of Africa may die before the age of five where diagnosis, prophylaxis, vaccination, and specialist follow-up are unavailable (WHO Regional Office for Africa, 2024).

Africa carries the greatest burden of SCD globally. The high frequency of the sickle cell gene in many African populations is partly explained by the survival advantage of sickle cell trait (HbAS) against severe malaria. While this protection helped preserve the gene in malaria-endemic regions, it also means that many children are born with SCD when both parents carry an abnormal haemoglobin gene (Piel et al., 2013).

Countries such as Nigeria, the Democratic Republic of Congo, Tanzania, Uganda, and Ghana contribute substantially to global SCD births. Despite increasing awareness, many African countries still face major barriers, including the absence of universal newborn screening, limited diagnostic infrastructure, inadequate public awareness, stigma, shortage of trained health workers, and weak linkage between diagnosis and long-term care (Archer et al., 2022; Nnodu, 2024; WHO Regional Office for Africa, 2024).

Point-of-care testing has created new opportunities for early diagnosis in communities and primary care settings. However, scale-up remains limited by cost, supply chains, quality assurance, workforce capacity, data systems, and the need for reliable referral pathways. For newborn screening to reduce mortality, diagnosis must be followed by counselling, penicillin prophylaxis, vaccination, malaria prevention, infection management, and continued clinical follow-up (Archer et al., 2022; Nnodu, 2024).

Nigeria bears the largest national burden of SCD. It has long been estimated that about 150,000 babies are born with SCD in Nigeria each year, representing a large share of global SCD births. About 20–30% of Nigerians carry the sickle cell trait (HbAS), while roughly 2–3% of newborns are affected by SCD (Nnodu et al., 2021; Piel et al., 2013).

The public health implications are profound. SCD contributes to infant and under-five mortality, repeated hospital visits, school absenteeism, reduced quality of life, lost productivity, and high household healthcare costs. Modelled evidence from Nigeria shows that SCD contributes substantially to under-five mortality, yet many children remain undiagnosed or are diagnosed only after developing severe complications (Nnodu et al., 2021).

One major challenge is the limited availability of routine newborn screening. Laboratory methods such as isoelectric focusing and high-performance liquid chromatography remain unavailable or unaffordable in many communities, while point-of-care tests are not yet widely integrated into public health programmes. Evidence from Ibadan also shows that community knowledge, health beliefs, and acceptability are important for successful neonatal screening, meaning that technical solutions must be paired with education, counselling, and trust-building (Babalola et al., 2019).

Nigeria has seen increasing public awareness campaigns promoting genotype compatibility, premarital genotype testing, and SCD education. However, the continued high number of SCD births shows that awareness alone is not enough. Prevention and care require a stronger system that combines community education, newborn screening, genetic counselling, early referral, routine follow-up, and sustained support for affected families.