Experts Demand Policy Action On Sickle Cell Care In Nigeria

Experts at the University of Abuja, now renamed Yakubu Gowon University, have called for urgent and coordinated policy action to tackle the growing burden of sickle cell disease in Nigeria and across Sub-Saharan Africa.

The call was made during 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) yesterday.

Speaking at the event, the Vice-Chancellor, Professor Hakeem Babatunde Fawehinmi, said the gathering 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 this challenge. We are at a critical moment where research must translate into action that directly improves lives.”

Fawehinmi commended the PACTS programme for generating four years of rigorous, community-based and policy-relevant research, stressing that the real task now lies in translating findings into concrete outcomes.

“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, Professor 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 the centre 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, 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.

Nnodu also emphasised the importance of newborn screening, noting that early diagnosis significantly improves survival rates and quality of life. Through its demonstration programmes, thousands of newborns have already been screened, proving that such interventions are feasible even in resource-constrained settings.

“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.

On her part, Professor Imelda Bates of the Liverpool School of Tropical Medicine, a Co-Principal Investigator in the PACS project, stressed the need to prioritise patient-centred approaches that address both medical and social challenges associated with the disease.

She noted that families affected by sickle cell disease often face stigma, financial strain and limited access to healthcare, making comprehensive support systems essential.

“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.

Bates also emphasised safeguarding as a key achievement of the project, explaining that structured training has been institutionalised across partner universities, promoting dignity, respect and ethical care for vulnerable patients.

She added 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.