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Nigeria holds the somber title of having one of the highest burdens of Sickle Cell Disease (SCD) in the world. Yet, according to leading medical experts gathered in Abuja this Thursday, the country is still “flying blind” when it comes to the true incidence of the disease.
Prof. Obiageli Nnodu, Director of the National Centre of Excellence for SCD Research, issued a stinging critique of the status quo, demanding that universal newborn screening become a mandatory national policy.
The Data of the Departed
Prof. Nnodu revealed a tragic statistical anomaly: SCD prevalence appears lower in adults than in children. This isn’t because the disease is being cured, but because a massive number of children are dying before their fifth birthday.
Without routine screening, these children never make it into the official data; they remain “estimates” rather than lives counted. “Newborn screening determines the actual birth incidence and the effectiveness of early diagnosis in preventing these early deaths,” she explained.
The Financial and Emotional Burden
The forum, organized by the Nigeria Society for Haematology and Blood Transfusion, also addressed the crushing cost of the disease. Consultant hematologist Prof. Nora Akinola noted that while curative care is an option for some, it is financially impossible for the majority.
She advocated for the use of “point-of-care” screening tools, low-cost, rapid tests that have already been validated for accuracy by Nigerian scientists.
From a financing perspective, Dr. Oche Otalu of the National Health Insurance Authority (NHIA) argued for a structural shift. By integrating SCD care into primary healthcare and insurance benefit packages, the government can move toward “risk pooling.”
This would protect families from the catastrophic out-of-pocket spending that often follows a sickle cell crisis, ensuring that a child’s survival doesn’t depend on their parents’ bank balance.
