Health professionals and researchers convened at the Centre of Excellence for Sickle Cell Disease Research and Training (CESRTA) and the Patient‑Centred Sickle Cell Disease Management in Sub‑Saharan Africa (PACTS) Consortium meeting in Abuja on Wednesday to demand coordinated action on sickle cell disease (SCD) in Nigeria and the wider region.
In opening remarks, Vice‑Chancellor Professor Hakeem Fawehinmi of Yakubu Gowon University highlighted Nigeria’s disproportionate burden, noting that an estimated 150,000 children are born with SCD each year. He warned that many will experience chronic pain, disrupted education and limited livelihood opportunities, largely because health services are weak in peri‑urban and rural settings. Fawehinmi called for a “clear, focused roadmap” to translate research findings into sustainable interventions.
University bursar Shiva M’ovul‑Kondoun shared a personal narrative, recalling the loss of six siblings to SCD and the scarcity of timely care. She urged local ownership of programmes as global funding declines, praising CESRTA’s role in shifting the narrative toward domestically driven solutions.
PACTS co‑principal investigator Professor Imelda Bates of the Liverpool School of Tropical Medicine stressed the project’s patient‑centred approach. Bates reported that roughly one in four Nigerians carries the sickle‑cell trait and 1.5‑2 % live with the disease, underscoring the need for expanded newborn screening. She also noted that safeguarding training developed under the project has been adopted by all participating universities, benefitting tens of thousands of students.
Professor Obiageli Nnodu, director of CESRTA Nigeria and co‑principal investigator, summarised the consortium’s assessment of care delivery in the Federal Capital Territory. Mapping six health facilities covering about 300 patients, the study evaluated adherence to national standards for penicillin prophylaxis, hydroxyurea use and blood transfusion. Findings reveal persistent stigma that deters mothers from seeking early care for their children. To counter this, the team will launch a radio programme, “Before it’s too late,” across multiple stations.
PACTS, funded by the UK’s National Institute for Health and Care Research, operates in Ghana, Nigeria and Zambia. The programme integrates clinical improvement, health‑worker training, data‑system strengthening and community engagement to reduce inequities and build resilient health systems for SCD patients.
The meeting concluded with a consensus that immediate, evidence‑based actions are essential to curb Nigeria’s high SCD mortality and to scale successful interventions across sub‑Saharan Africa.
