Research reveals nearly nine million African children living with life-threatening disease

A major new study has revealed that almost nine million children across sub-Saharan Africa are living with sickle cell disease, many without access to early diagnosis or lifesaving care.

The study, led by Associate Professor Davies Adeloye, in the Centre for Population Health and Healthcare in the School of Health & Life Sciences at Teesside University, provides the most comprehensive and policy-relevant country-level estimates to date of the burden of paediatric sickle cell disease across the region.

With data from 40 studies across 22 African countries, the researchers found that the burden of the disease is heavily concentrated in West and Central Africa, with Nigeria, the Democratic Republic of Congo and Ethiopia accounting for the highest numbers of affected children, highlighting where targeted, urgent investment could have the greatest impact.

Sickle cell disease is an inherited blood disorder that is present at birth and can be detected through newborn screening. With early diagnosis and access to simple low cost interventions – including penicillin prophylaxis, routine vaccinations, malaria prevention and treatment with hydroxyurea – most deaths and severe complications can be prevented.

However, the study highlights that newborn screening and comprehensive care remain limited in many African countries, with many children only diagnosed after severe, avoidable complications, or not diagnosed at all, contributing to high early childhood mortality.

Dr Adeloye said: 'At Teesside University, research that delivers positive impact into health and wellbeing forms a cornerstone of our research strategy, and we are very proud to publish this paper, which provides a much clearer insight into the true extent of this devastating disease.

'Our findings show that sickle cell disease remains one of the largest yet most neglected and preventable childhood health challenges in Africa.

'Nearly nine million children are living with this condition, many without access to early diagnosis or basic care that could save their lives.

'The evidence is clear and we already know what works. Newborn screening and early treatment are highly effective, affordable, and scalable. If countries prioritise these interventions and integrate them into routine child health services, hundreds of thousands of lives could be saved every year.'

The researchers also stress the importance of strengthening national data and surveillance systems to ensure resources are directed where the need is greatest.

The study calls for urgent and coordinated action across governments and global health partners, including:

• Expanding newborn and early childhood screening programmes
• Integrating sickle cell care into primary child health services
• Improving access to essential medicines and vaccines
• Increasing domestic investment alongside international support
• Strengthening national data and surveillance systems

The authors conclude that even modest improvements in early life screening and treatment in high burden countries could transform child survival across the region and significantly reduce preventable deaths.

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