Health experts and medical researchers have called for swift and unified action to address the increasing impact of sickle cell disease in Nigeria and across Sub-Saharan Africa. They warned that without a deliberate and collaborative response, the condition will continue to strain already overburdened healthcare systems and affect millions of lives in the region.
The appeal was made on Wednesday during a meeting of the Centre of Excellence for Sickle Cell Disease Research and Training and the Patient-Centred Sickle Cell Disease Management in Sub-Saharan Africa Consortium, held at the University of Abuja.
Nigeria's High Burden of Sickle Cell Disease
In his opening address, the Vice-Chancellor of the University of Abuja, Professor Hakeem Fawehinmi, noted that Nigeria bears one of the highest burdens of sickle cell disease globally, with an estimated 150,000 children born with the disorder each year. The Professor of Clinical Anatomy and Biomedical Anthropology described the gathering as timely and crucial for the millions living with the condition.
He explained that findings from research conducted under the PACTS programme over the past four years have produced evidence that could significantly improve health outcomes if effectively applied. "Sadly, many of them will face a lifetime of pain, interrupted schooling, compromised livelihood, and inadequate care, mostly because of our resource-poor settings in areas outside the centre, peri-urban areas, and rural areas," he said.
Fawehinmi emphasised the need for sustained collaboration among government agencies, healthcare providers, researchers, and development partners to scale up screening, treatment, and community-based support systems. He stressed that only a coordinated and results-driven approach would yield lasting impact.
Assessment of Care Quality
Professor Obiageli Nnodu, Director of the Centre in Nigeria and Co-Principal Investigator of the PACTS programme, disclosed that the consortium has been examining the quality of care delivered to sickle cell patients across health facilities in the Federal Capital Territory (FCT). The assessment spans six health institutions, involving approximately 300 patients currently receiving treatment. The initiative aims to provide a clearer picture of how care is delivered across different levels of the healthcare system.
Nnodu noted that the facilities under review include three tertiary hospitals and three primary healthcare centres, allowing the study to capture both advanced and community-level care dynamics. The research focuses on evaluating how well healthcare providers adhere to nationally approved treatment protocols, particularly in preventive care and disease management. Key standards examined include the use of penicillin prophylaxis, hydroxyurea therapy, and blood transfusion practices.
Highlighting findings from community engagement, she pointed out that stigma continues to hinder early access to treatment. "We found that stigma in the communities prevents mothers from bringing their babies in for care," she said. Awareness initiatives, including an upcoming radio programme titled Before it's too late, are being deployed to improve public understanding and encourage timely intervention.
Patient-Centred Approach
Co-Principal Investigator of the PACTS programme and haematologist at the Liverpool School of Tropical Medicine, Professor Imelda Bates, emphasised that the initiative is firmly centred on the needs of patients. The project prioritises individuals living with sickle cell disease, along with their families and caregivers, to identify their most pressing challenges and develop practical, locally driven solutions that can be sustained over time.
Bates highlighted the vulnerability of people living with the condition, noting that many families face significant financial strain due to high out-of-pocket medical expenses. The burden is often compounded in households where multiple children are affected, making long-term care emotionally and economically demanding. She also drew attention to the broader social and economic difficulties confronting patients, stressing that these challenges extend beyond clinical care.
She noted that the project has led to improvements in safeguarding practices, with training and standards now adopted across participating universities to better protect and support patients involved in research and care. Bates revealed that sickle cell traits are widespread in Nigeria, with about one in four people carrying the gene, while between 1.5 and 2 per cent of the population lives with the disease. Expanding screening programmes is critical to enabling early diagnosis and improving health outcomes.
Collaboration and Future Directions
The meeting brought together stakeholders from across Africa and international partners to review progress and strengthen collaboration. The PACTS programme, funded by the UK's National Institute for Health and Care Research, focuses on enhancing care for people living with sickle cell disease in sub-Saharan Africa through a patient-centred model. Operating in Ghana, Nigeria, and Zambia, it promotes improved clinical care, workforce training, stronger data systems, and community engagement, while leveraging research and partnerships to build more resilient health systems.
