Health
Newborn Screening: Experts Seek National Scale-up To Curb Sickle Cell Burden
By Folasade Akpan
Haematologists have called for a national scale-up of newborn screening for Sickle Cell Disease (SCD) to reduce early childhood deaths and improve long-term outcomes.
They made the call on Thursday in Abuja at the two-day Nigeria Inherited Blood Disorders Leadership Forum organised by the Nigeria Society for Haematology and Blood Transfusion.
The forum which began on Wednesday and themed “Strengthening Blood Disorder Care through Collaboration, Partnership and Sustainable Investment,” seeks actionable steps to enhance national care for inherited blood disorders.
The News Agency of Nigeria (NAN) reports that SCD is a hereditary disorder marked by abnormal haemoglobin production, which results in recurrent pain and chronic complications.
Prof. Nora Akinola, Consultant Haematologist, said Nigeria remained “underequipped” for widespread newborn screening, stressing that prevention must receive greater priority than cure.
According to her, many families cannot afford treatment and the government may also struggle with high curative costs, making preventive screening the most sustainable option.
Akinola urged the adoption of cheaper point-of-care screening tools, noting that Nigerian haematologists had validated their accuracy in a 2004 multicentre study.
She said the study confirmed that SCD remains highly prevalent in the North-West and South-West, with the sickle S gene more concentrated in the South-West.
Akinola emphasised the need for universal newborn screening, saying ongoing screening efforts across Nigeria remain limited and largely supported by research, donations and public-private initiatives.
She explained that newborn screening relies on “three Ts and two Es’ that is testing, tracking, treatment, education and evaluation to ensure accurate diagnosis, counselling and sustained care.
Akinola said while testing is increasing; counselling and follow-up remain weak due to inadequate numbers of trained counselors nationwide.
She called for SCD education to be integrated into secondary school curricula to promote informed decisions and strengthen community support for affected families.
Prof. Obiageli Nnodu, Director, National Centre of Excellence for Sickle Cell Disease Research and Training, said early screening and continuous care significantly reduce under-five mortality.
She said SCD prevalence appears lower in adults than children because many affected children die early due to lack of screening and standardised care.
Nnodu noted that without universal newborn screening, SCD epidemiologic data in Nigeria continues to rely on estimates instead of population-based incidence.
“Newborn screening determines the actual birth incidence of SCD and the effectiveness of early diagnosis and standard care in preventing deaths,” she said.
Dr Christiana Udo, Senior Consultant Haematologist, National Hospital Abuja, said early diagnosis allows timely interventions that reduce complications and improve long-term quality of life.
She added that screening provides vital education for families, supporting adherence to treatment and preventive measures such as vaccination and prophylactic therapies.
Udo stressed continued advocacy for comprehensive care models and screening programmes to ensure improved outcomes for people living with SCD.
Dr Oche Otalu, Assistant Director, National Health Insurance Authority (NHIA), said SCD poses a lifelong health and financial challenge requiring sustained policy and funding responses.
He said patients experience recurrent crises and catastrophic out-of-pocket costs, while existing health coverage mainly responds to emergencies instead of preventive care.
Otalu said integrating SCD services into primary healthcare and NHIA benefit packages would ensure early intervention, continuity of care and reduced avoidable hospital admissions.
He said risk pooling through health insurance protects families, promotes equity and ensures predictable funding for predictable lifelong health needs.
“Integrating SCD care into NHIA and PHC is a statement of equity, dignity and national responsibility,” he said.
Otalu added that including comprehensive SCD care in NHIA’s purchasing framework fulfils the authority’s mandate of providing sustainable financial protection for chronic conditions. (NAN)(www.nannews.ng)
Edited by Halima Sheji