Health experts and medical researchers have urged swift and unified efforts to tackle the rising impact of sickle cell disease in Nigeria and throughout Sub-Saharan Africa.

They stressed that without a deliberate, collaborative response, the condition will continue to place immense strain on already stretched healthcare systems while affecting millions of lives across 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, convened at the University of Abuja.

In his opening address, the Vice-Chancellor of the University, Prof. Hakeem Fawehinmi, pointed out that Nigeria accounts for one of the highest burdens of sickle cell disease worldwide, with an estimated 150,000 children born with the disorder each year.

The Professor of Clinical Anatomy and Biomedical Anthropology underscored the importance of the gathering, describing it as both timely and crucial for the millions living with the condition.

The Don further explained that findings from research conducted under the PACTS programme over the past four years have produced evidence with the potential to 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 a lot of our resource-poor settings in the areas outside the centre, peri-urban areas, rural areas.

“As PACTS enters its final phase, the question before us goes beyond what research we have uncovered, what have we discovered? Equally important is what we do with these findings, and who is responsible for ensuring that these gains are implemented and sustained,” he added.

Fawehinmi emphasised the importance of sustained collaboration among government agencies, healthcare providers, researchers, and development partners to scale up screening, treatment, and community-based support systems, noting that only a coordinated and results-driven approach would yield lasting impact.

In her intervention, the Director, Centre in Nigeria and Co-Principal Investigator of the PACTS programme, Prof. Obiageli Nnodu, 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).

She explained that the assessment spans six health institutions within the FCT, involving approximately 300 patients who are currently receiving treatment. According to her, the initiative is designed to provide a clearer picture of how care is delivered across different levels of the healthcare system.

Prof. 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.

She further stated that the research focuses on evaluating how well healthcare providers adhere to nationally approved treatment protocols, particularly in areas such as preventive care and disease management.

According to her, the study closely examines the implementation of key standards, including the use of penicillin prophylaxis, hydroxyurea therapy, and blood transfusion practices, with the aim of determining whether patients are receiving care in line with established guidelines.

Highlighting findings from community engagement, she pointed out that stigma continues to hinder early access to treatment, adding, “We found that stigma in the communities prevents mothers from bringing their babies in for care,” while also noting that awareness initiatives, including an upcoming radio programme titled Before it’s too late, are being deployed to improve public understanding and encourage timely intervention.

Also, Co-Principal Investigator of the PACTS programme and haematologist at the Liverpool School of Tropical Medicine, Prof. Imelda Bates, emphasised that the initiative is firmly centred on the needs of patients.

She noted that the project prioritises individuals living with sickle cell disease, along with their families and caregivers, with a view to identifying their most pressing challenges and developing practical, locally driven solutions that can be sustained over time.

Prof. Bates highlighted the vulnerability of people living with the condition, pointing out that many families face significant financial strain due to high out-of-pocket medical expenses. She added that the burden is often compounded in households where multiple children are affected, making long-term care both 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. In addition, 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.

Providing further insight, 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. She stressed that expanding screening programmes is critical to enabling early diagnosis and improving health outcomes.

The Guardian reports that 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, is focused 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.