Experts blame poor genotype testing and stigma for high child mortality; call for urgent government intervention nationwide

More than 150,000 babies are born with sickle cell disease every year in Lagos and other states across Nigeria, making the country the global epicentre of the condition. Health experts raised fresh concerns on Wednesday, urging federal and state governments to establish a coordinated national newborn screening programme to tackle late diagnosis and reduce preventable deaths.

According to medical professionals, the lack of routine newborn screening, widespread public ignorance about sickle cell inheritance, unreliable genotype tests and strong societal stigma have left millions vulnerable. Nigeria currently has about 50 million people carrying the sickle cell trait, with between two and three percent of the population living with the disease. Nearly half of children affected reportedly die before their fifth birthday due to missed early intervention.

Sickle cell disease is an inherited blood disorder causing red blood cells to become hard, sticky and crescent-shaped. These abnormal cells can block blood flow, resulting in severe pain crises, organ damage and a range of complications including stroke, anaemia, recurrent infections and mental health issues such as depression. Frequent hospital admissions disrupt education and employment opportunities for patients and create significant out-of-pocket costs for families.

Dr Chinedu Ezeh, a haematology consultant based in Lagos, said during a phone interview that “the lack of standardised genotype testing across laboratories has made it difficult for couples to make informed decisions.” He called on the Ministry of Health to strengthen regulatory oversight of testing centres and ensure accurate results nationwide.

Advocacy groups stressed that stigma remains a major barrier. Many patients are labelled as ‘sicklers,’ a term considered derogatory by those affected. Some reportedly hide or alter their genotype status to avoid discrimination at home or in workplaces. “Nigeria cannot win this fight if we do not address ignorance and stigma in our communities,” said Mrs Yetunde Adebayo, convener of a sickle cell awareness initiative in Ogun State.

While premarital screening campaigns have been introduced in several states, gaps in implementation persist due to poor quality control in laboratories and limited public awareness. Experts say robust government action—including full enforcement of existing sickle cell policies and increased funding for awareness campaigns—will be critical to reducing child mortality from the disease.

Stakeholders are calling on both federal and state governments to make newborn screening compulsory across all health facilities as part of routine immunisation schedules. They also want continuous education programmes targeting schools and religious centres to improve community understanding about prevention.

Source: https://www.pulse.ng/story/over-150000-babies-born-with-sickle-cell-every-year-why-nigerias-crisis-persists-2026061915324506760