…warn Nigeria risks losing millions without immediate intervention

By Joseph Erunke, Abuja

Key stakeholders in Nigeria’s health and research sectors have raised fresh alarm over the deepening sickle cell crisis, calling for urgent, coordinated policy action to translate years of research into lifesaving interventions.

The call came at the Patient-Centred Sickle Cell Disease Management in Sub-Saharan Africa (PACTS) International Consortium Meeting hosted by Yakubu Gowon University (formerly University of Abuja), where experts described the situation as critical for millions living with the condition.

Vice-Chancellor of the university, Prof. Hakeem Babatunde Fawehinmi, warned that Nigeria remains one of the countries with the highest global burden of sickle cell disease, with about 150,000 children born annually with the condition.

He lamented that many of these children face lifelong pain, disrupted education, and limited opportunities due to inadequate care, 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,” Fawehinmi said, stressing the need for clear policies, sustainable funding, and effective implementation strategies.

Also speaking, Co-Principal Investigator and Nigeria Country Lead of PACTS, Prof. Obiageli Nnodu, highlighted the role of the university’s Centre of Excellence for Sickle Cell Disease Research and Training (CESTRA) in bridging gaps through research, training, and collaboration.

She disclosed that the centre has built a registry of over 10,000 patients across 25 clinical sites nationwide, providing critical data for policy planning, while ongoing studies across six health facilities in the Federal Capital Territory have exposed major gaps in treatment consistency and access to essential care.

Nnodu identified stigma and misinformation as significant barriers, noting that some mothers avoid seeking care due to societal pressure.

She emphasised the importance of newborn screening and community awareness initiatives, including a radio programme, “Before It’s Too Late,” aimed at improving public understanding of the disease.

From the international perspective, Co-Principal Investigator of PACTS and haematologist at the Liverpool School of Tropical Medicine, Prof. Imelda Bates, underscored the importance of patient-centred care, noting that many families bear heavy financial burdens due to out-of-pocket treatment costs.

She revealed that about one in four Nigerians carries the sickle cell gene, while up to two per cent of the population lives with the disease, warning that stigma, poor healthcare access, and weak social support systems continue to worsen outcomes.

In an emotional account, the university’s Bursar, Shiva M’ovul-Kondoun, shared that she lost six siblings to sickle cell disease before the age of 30, describing the experience as traumatic and calling for stronger local ownership of interventions amid declining international funding.

“Access to care was almost non-existent. What we are seeing today gives hope, but solutions must be locally driven,” she said.

Participants at the meeting, including researchers, policymakers, and international partners, collectively stressed that without urgent policy implementation and sustained investment, the growing sickle cell burden could overwhelm Nigeria’s health system and continue to claim thousands of lives annually.

The PACTS programme, funded by the UK’s National Institute for Health and Care Research, operates across Nigeria, Ghana, and Zambia, focusing on strengthening health systems through improved clinical care, workforce training, data systems, and community engagement.

Stakeholders agreed that the time for dialogue has passed, urging government at all levels to act decisively to scale up screening, expand access to treatment, and implement evidence-based policies capable of saving millions of lives.