The National Health Insurance Authority (NHIA) has emphasised the need to integrate Sickle Cell Disease (SCD) services into primary healthcare and the NHIA benefit package to improve access, affordability and long-term outcomes.

Assistant Director at the NHIA, Dr Oche Otalu, said incorporating SCD care into primary healthcare (PHC) and insurance coverage would promote early intervention, continuity of care, reduced catastrophic health spending, fewer avoidable hospital admissions and improved long-term outcomes for people living with the condition.

Nigeria bears one of the highest burdens of sickle cell disease globally, with thousands of affected children dying before their fifth birthday due to late diagnosis and limited access to care. Experts noted that newborn screening remains limited nationwide, leaving many cases undetected until complications arise.

Speaking at the Nigeria Inherited Blood Disorders Leadership Forum organised by the Nigeria Society for Haematology and the National Blood Service Agency (NBSA) in Abuja, Otalu described SCD as a lifelong medical and financial challenge requiring sustained policy attention and funding.

He observed that many patients experience recurrent crises and incur catastrophic out-of-pocket expenses, while existing health coverage often responds to emergencies rather than preventive care. According to him, risk pooling through health insurance protects families, promotes equity and ensures predictable funding for lifelong health needs.

“Integrating SCD care into NHIA and PHC is a statement of equity, dignity and national responsibility,” Otalu said. He disclosed that the Authority is reviewing its operational guidelines to incorporate comprehensive care for children born with sickle cell disease and ensure financial protection for affected families.

He added that existing structures must be strengthened and benefit packages negotiated with stakeholders, particularly Health Management Organisations (HMOs), to ensure professional services are comprehensive along the care pathway, with both primary and secondary services accessible in a coordinated system.

Haematologists at the forum called for a scale-up of newborn screening to curb preventable child deaths caused by delayed diagnosis. They also agreed that integrating SCD services into primary healthcare and health insurance coverage would strengthen prevention, improve financial protection and reduce avoidable deaths among affected Nigerians.

The Director of the National Centre of Excellence for Sickle Cell Disease Research and Training at the University of Abuja, Prof. Obiageli Nnodu, underscored the importance of early screening and continuous care in reducing under-five mortality. She noted that the apparent lower prevalence of SCD among adults compared to children reflects high childhood mortality linked to inadequate screening and lack of standardised care.

Nnodu lamented Nigeria’s continued reliance on estimates rather than population-based data due to the absence of universal newborn screening. She explained that comprehensive screening would determine the true birth incidence of SCD and demonstrate the impact of early diagnosis and standard care in preventing deaths.

Consultant haematologist, Prof. Nora Akinola, observed that Nigeria remains ill-equipped for widespread newborn screening, with most ongoing initiatives driven by research grants and public-private partnerships. She explained that effective newborn screening involves testing, tracking, treatment, counselling and evaluation to ensure accurate diagnosis and sustained care.

While testing capacity is gradually improving, Akinola said counselling and follow-up services remain weak due to a shortage of trained counsellors.

She noted that many families struggle to afford long-term treatment, making affordable point-of-care testing a more sustainable option.

She urged policymakers to prioritise preventive strategies over costly curative care and adopt cheaper screening tools. According to her, available data show that SCD remains highly prevalent in the North-West and South-West, with the sickle S gene more concentrated in the South-West.

Akinola also advocated the inclusion of SCD education in secondary school curricula to promote informed decision-making and strengthen community support for affected families.

Consultant haematologist at Kaduna State University, Dr Halima Bello-Manga, highlighted gaps in access to essential treatments, warning that limited access contributes to severe pain crises, frequent hospitalisation, early mortality.

And poor quality of life. She noted that emerging therapies are shifting beyond symptom management toward disease-modifying and gene-based interventions.

Similarly, senior consultant haematologist at the National Hospital, Abuja, Dr Christiana Udo, stressed that early diagnosis enables timely interventions that reduce complications and improve long-term quality of life. She said screening also provides critical education for families, encouraging adherence to treatment, vaccination and prophylactic therapies.

Chairman of the forum, Prof. Wuraola Shokunbi, urged the Federal Government to establish dedicated funding for haemophilia care, noting that several countries maintain specific budgetary provisions for managing the disorder.

She advocated home-based therapy and training for patients and caregivers to safely administer infusions, while encouraging younger healthcare professionals to sustain advocacy for inherited blood disorders.