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…1 in 4 Nigerians has sickle cell gene
From Fred Ezeh, Abuja
Experts in the global management of sickle cell disease have highlighted the importance of coordinated policies involving government and researchers in the efforts to tackle/manage sickle cell disease in Nigeria and even beyond.
They said that Nigeria and Africa stand a better chance of fixing the challenges of sickle cell disease or even a total eradication of the disease from the surface of the earth if there’s a meeting point between government and researchers for the purposes of a coordinated policies and implementation.
Prof. Imelda Bates of the Liverpool School of Tropical Medicine who is a Co-Principal Investigator in the Patient-Centred Sickle Cell Disease Management in Sub-Saharan Africa (PACTS) championed the campaign at PACTS international consortium meeting held at the University of Abuja (UniAbuja), on Wednesday.
The meeting hosted by the University’s Centre of Excellence for Sickle Cell Disease Research and Training (CESTRA) provided more opportunities for deeper deliberations on the different level of research on sickle cell disease, and suggestions ahead.
It was explained that PACTS is a transformative research and implementation programme dedicated to improving the
health challenge in Africa, adding that the initiative seeks to strengthen health systems, enhance access to quality of life of individuals living with sickle cell disease.
The PACTS programme was also structured into interconnected work packages designed to strengthen health systems and improve patient-centred care for individuals living with sickle cell disease across sub-Saharan Africa.
Prof. Bates stressed the need to prioritise patient-centred approaches that address both medical and social challenges associated with the disease, stressing that families affected by sickle cell disease often face stigma, financial strain and limited access to healthcare, making comprehensive support systems essential.
“To this end, we are working closely with patients and their families to understand their challenges and co-create sustainable solutions that improve their quality of life,” she said.
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She disclosed that approximately one in four Nigerians carries the sickle cell gene, with about 1.5 to 2 per cent of the population living with the disease, underscoring the scale of the public health challenge.
UniAbuja Vice-Chancellor, Prof. Hakeem Babatunde Fawehinmi, in his remarks, said the International Consortium Meeting was both timely and critical, given Nigeria’s position as one of the countries with the highest burden of sickle cell disease globally.
“As a medical doctor, I am fully aware of the enormity of the challenge. We are at a critical moment where research must translate into action that directly improves lives.
“The question before us is no longer just what we have discovered, but what we will do with these findings. We need clear policy formulation, effective implementation strategies, sustainable funding, and a focused roadmap,” he said.
He urged stakeholders to move beyond dialogue and commit to reforms that will strengthen health systems, improve access to treatment, and ensure that underserved communities benefit from advancements in care.
Earlier, Prof. Obiageli Nnodu, Co-Principal Investigator and Nigeria Country Lead, restated the role of CESTRA in bridging knowledge gaps through multidisciplinary research, capacity building and collaboration across Nigeria and internationally.
Established in 2015, she said that CESTRA focuses on clinical, translational and implementation science aimed at improving diagnosis, treatment and overall management of sickle cell disease.
She revealed that one of its flagship initiatives named “the Sickle Pan-African Research Consortium” has developed a registry of over 10,000 patients across 25 clinical sites in Nigeria, providing critical data to guide interventions and policy decisions.
“Our goal is not just to conduct research, but to ensure that the knowledge generated leads to real improvements in patient care and informs national health policies,” she said.
