THE VICE-CHANCELLOR, Yakubu Gowon University, Prof. Hakeem Fawehinmi, says Nigeria bears the highest global burden of Sickle Cell Disease, with about 150,000 children born annually with the condition nationwide.
Fawehinmi spoke at the Patient-Centred Sickle Cell Disease Management in Sub-Saharan Africa (PACTS) Consortium meeting, organised under CESRTA on Wednesday in Abuja, highlighting urgent national health challenges.
He said many affected children endured lifelong pain, disrupted education, reduced livelihood prospects, and poor access to quality healthcare, particularly in rural and peri-urban communities across Nigeria.
According to him, the SCD situation represents a critical national health emergency requiring urgent, coordinated, and sustained intervention across government, research institutions, and development partners nationwide.
He said that the PACTS programme had, over four years, generated strong community-based and policy-relevant evidence aimed at improving understanding and management of the disease burden.
“We live at a critical moment. As a medical doctor myself, I am aware of the enormity of the health challenges that the world is facing, part of which brings us together this morning.
“Nigeria is among the countries of the world that bears the highest burden and prevalence of sickle cell disease in the world,” he said.
Fawehinmi commended CESRTA researchers for their dedication, describing their work as impactful, evidence-driven, and essential for shaping national and regional responses to SCD.
“What they have done is truly worth of commendation.
“As PACTS enters its final phase, the question before us goes beyond what research have we uncovered, what have we discovered.
“Equally important is what do we do with these findings and who is responsible for ensuring that these gains are implemented and sustained,” he said.
He urged stakeholders to develop clear policy frameworks and actionable plans to ensure research findings translated into improved healthcare delivery for affected communities.
The Director of CESRTA, Prof. Obiageli Nnodu, said Nigeria had established SCD standards of care and guidelines, but their implementation across health facilities remained uneven and required urgent strengthening nationwide.
She said the PACTS project was assessing how effectively those standards were applied in hospitals and communities while also evaluating public awareness and knowledge of SCD.
According to her, stigma remains a major barrier, discouraging mothers from bringing infants for newborn screening and timely follow-up care after diagnosis.
“Community engagement revealed that stigma discourages mothers from bringing affected babies to health facilities. This is a critical gap we must address,” she said.
Nnodu said other challenges included low awareness, long distances to health facilities, and difficulties in accessing essential medications required for effective treatment and management.
She said the project had reached about 300 patients across six FCT health facilities, including tertiary hospitals and primary healthcare centres, assessing standards of care delivery.
“There are certain standards that they ought to have with regard to penicillin prophylaxis, with regard to hydroxyurea utilisation, which is a disease-modifying treatment with regard to blood transfusion,” she said.
She added that media engagement, journalist training, and upcoming radio programmes such as “Before It is Too Late” are improving awareness and correcting misconceptions about SCD nationwide.
Prof. Imelda Bates of the Liverpool School of Tropical Medicine, said the PACTS project focused on patients, families, and carers to identify challenges and develop sustainable, locally appropriate solutions.
She said the initiative involved partners from Nigeria, Ghana, Zambia, and universities in the United States and United Kingdom, strengthening international collaboration on SCD research and care.
Bates said children with SCD remained highly vulnerable, facing severe medical complications, social stigma, and heavy financial burdens due to out-of-pocket healthcare costs.
“They are a very vulnerable group of patients, the children. The carers often have issues with the family being stigmatised.
“The families often struggle significantly, especially where multiple children are affected,” she said.
She said safeguarding and respect for patients were central to the project, with training now adopted across partner universities to strengthen care systems and professional practice.
Bates said about one in four Nigerians carried the sickle cell gene, making early screening and diagnosis essential for improving survival and quality of life.
“If you know they have got the condition you can get them into care very early and they stand a much better chance of having good quality of life and living longer,” she said.
Dr Aderonke Akande of the FCT Primary Healthcare Board said the FCT Health Insurance Scheme allowed residents in both formal and informal sectors to access affordable healthcare services.
She said enrolment remained low in the informal sector in spite of strong benefits, including free testing services and family coverage at less than N20,000 per year.
“For the formal sector, we all know it is statutory. If you are a staff member, you already have what it takes to enroll.
“But what most people do not know is that the informal sector side is basically empty,” she added.
Akande urged residents to take advantage of the scheme to improve access to preventive care, early diagnosis, and treatment of chronic conditions such as SCD.
The News Agency of Nigeria (NAN) reports that PACTS is a research and implementation programme aimed at improving the quality of life of people living with Sickle Cell Disease.
