By Sodiq Oyeleke, Abuja
The Vice-Chancellor of Yakubu Gowon University (formerly University of Abuja), Prof. Hakeem Babatunde Fawehinmi, has called for urgent and coordinated policy action to tackle Nigeria’s rising sickle cell burden, warning that millions of lives remain at risk without swift intervention.
Speaking at the Patient-Centred Sickle Cell Disease Management in Sub-Saharan Africa (PACTS) International Consortium Meeting hosted by the university’s Centre of Excellence for Sickle Cell Disease Research and Training (CESTRA), Fawehinmi described the situation as a “critical and decisive moment” for the country.
A medical doctor, the Vice-Chancellor noted that Nigeria accounts for one of the highest global burdens of sickle cell disease, with an estimated 150,000 children born annually with the condition.
He lamented that many of these children endure lifelong pain, disrupted education, and limited opportunities due to inadequate healthcare, particularly in rural and underserved communities.
“We are at a critical point where research must move beyond publications to practical solutions that directly improve lives,” he said.
Fawehinmi emphasised that the four-year PACTS programme has produced strong, community-based and policy-relevant evidence capable of transforming outcomes if effectively implemented.
“The question is no longer what we have discovered, but what we will do with these findings. We need clear policies, effective implementation strategies, sustainable funding, and a focused roadmap,” he added.
He urged stakeholders to move beyond dialogue and commit to concrete reforms that would strengthen health systems and expand access to quality care.
Earlier, Co-Principal Investigator and Nigeria Country Lead of PACTS, Prof. Obiageli Nnodu, highlighted the contributions of CESTRA in bridging critical gaps through research, training, and partnerships.
She explained that the centre, established in 2015, focuses on improving diagnosis, treatment, and management of sickle cell disease through clinical and implementation science.
According to her, one of its flagship initiatives has created a registry of over 10,000 patients across 25 clinical sites nationwide, providing essential data for policy planning and interventions.
Nnodu added that the consortium has been assessing care delivery across six health facilities in the Federal Capital Territory, covering about 300 patients.
She said the study evaluates adherence to national treatment standards, including penicillin prophylaxis, hydroxyurea therapy, and blood transfusion protocols, revealing significant gaps in consistency and access to care.
She also identified stigma as a major barrier, noting that some mothers avoid seeking medical attention for their children due to societal pressure and misinformation.
To address this, she said awareness campaigns, including a radio programme titled “Before It’s Too Late,” are being deployed to educate communities.
Nnodu further stressed the importance of newborn screening, describing early diagnosis as critical to improving survival rates and quality of life.
Also speaking, Co-Principal Investigator of PACTS and haematologist at the Liverpool School of Tropical Medicine, Prof. Imelda Bates, underscored the need for patient-centred care.
She said the initiative focuses on understanding the lived experiences of patients, families, and caregivers, while developing sustainable, locally relevant solutions.
Bates highlighted the heavy financial burden on families, many of whom pay out-of-pocket for treatment while caring for multiple affected children.
She added that stigma, poor access to healthcare, and weak social support systems continue to worsen patient outcomes.
According to her, about one in four Nigerians carries the sickle cell gene, while between 1.5 and 2 per cent of the population lives with the disease.
She also pointed to safeguarding as a key achievement of the project, noting that structured training has been institutionalised across partner institutions to promote ethical and respectful care.
In an emotional account, the university’s Bursar, Shiva M’ovul-Kondoun, shared her personal loss, revealing that she lost six siblings to sickle cell disease before they turned 30.
“Access to care was almost non-existent. What we are seeing today gives hope, but we must ensure that solutions are driven locally,” she said, calling for stronger domestic ownership of interventions amid declining international funding.
She urged stakeholders not to leave the fight against sickle cell disease solely in the hands of foreign partners.
The meeting brought together researchers, health professionals, policymakers, and international partners from across Africa and beyond, all calling for urgent, coordinated efforts to reduce the burden of the disease.
The PACTS programme, funded by the United Kingdom’s National Institute for Health and Care Research, operates in Nigeria, Ghana, and Zambia, focusing on strengthening health systems through improved clinical care, workforce training, data systems, and community engagement.
CESTRA, the host institution, continues to play a leading role in Nigeria’s response through research, policy advocacy, and capacity building. With initiatives such as SPARC-Net and CONSA, the centre has expanded patient registries, improved screening, and trained healthcare workers.
Participants warned that without urgent policy implementation and sustained investment, the growing sickle cell crisis could overwhelm health systems and continue to claim thousands of lives annually.
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