Nigeria Tops Global Sickle Cell Cases Among Children: What the Data Says and What Must Change

A landmark study published in The Lancet Child and Adolescent Health has confirmed what researchers and clinicians in Nigeria have warned about for years: Nigeria now carries the highest burden of sickle cell disease in the world, with more than 1.5 million children under the age of 15 living with the condition. 

The study, which examined data across 22 African nations, found that of the nearly nine million children affected across sub-Saharan Africa, Nigeria’s figures far exceed those of every other country, including the Democratic Republic of Congo and Ethiopia.

What makes this finding especially difficult to absorb is that sickle cell disease is not incurable. The deaths and complications it causes in Nigerian children are largely preventable through interventions that are affordable, available, and already proven to work. The crisis is not primarily scientific. It is a crisis of access, political will, and health system delivery.

The Scale of the Crisis: Key Statistics

The statistic that demands the most urgent attention is the child mortality risk. Without proper care, between 50 and 90 percent of children with sickle cell disease in sub-Saharan Africa will not live to their fifth birthday. 

In Nigeria, where access to specialist services is concentrated in tertiary hospitals and largely unavailable at primary care level, that figure represents hundreds of thousands of children dying from a condition that is medically manageable.

What Happens When Screening is Absent

A 2021 study published in The Lancet Haematology, using data from Nigeria’s 2018 Demographic and Health Survey, the first DHS in the country to include sickle cell screening, modelled child mortality attributable to sickle cell disease at the population level. The findings confirmed that children with sickle cell anemia who were not enrolled in care accounted for a disproportionate share of under-five deaths. Children with SCD who were not enrolled in any care programme represented less than 0.4 percent of the birth cohort but accounted for over 10 percent of under-five deaths.

That ratio tells the story clearly. A small group of identifiable children, detectable at birth through a straightforward blood test, are dying at a rate that is vastly out of proportion to their numbers. They are not dying because treatment does not exist. They are dying because no one tested them at birth, no one started them on penicillin prophylaxis, and no one prescribed hydroxyurea before a crisis occurred.

The Kano newborn screening pilot programme, one of the few structured examples of state-level screening in Nigeria, demonstrated that identification at birth followed by immediate enrolment into care is both feasible and effective in a Nigerian primary healthcare setting. The challenge is that it has remained a pilot. It has not been replicated at national scale.

Why the Healthcare System is Failing These Children

Professor Davies Adeloye of Teesside University, UK, lead author of the Lancet study, said plainly: “We already know what works. Newborn screening and early treatment are effective, affordable, and can be delivered through existing health systems.” The gap is not knowledge. It is implementation.

Several specific failures compound the crisis in Nigeria. First, there is no universal mandatory newborn screening programme. Some states, including Oyo, have begun introducing neonatal screening after birth, but coverage is inconsistent and not yet embedded in routine immunisation delivery at national scale. Many children in rural areas are never screened at all and are only diagnosed after suffering a severe, avoidable complication.

Second, hydroxyurea, the most effective disease-modifying drug for sickle cell disease and widely used in high-income countries, remains severely underutilised in Nigeria. Barriers include cost, absence from many hospital formularies, inadequate prescriber knowledge, and lack of coverage under the National Health Insurance Scheme. 

A study published in PubMed found that inadequate knowledge, non-availability, and cost were the three primary barriers to hydroxyurea use among both doctors and patients.

Expert View – The Problem is Political, Not Scientific

Professor Adeloye’s assessment of Nigeria’s position is unambiguous: “Nigeria now stands at the centre of the global sickle cell crisis. With over 1.5 million children affected, the scale is enormous, but so is the opportunity to act.” His research team emphasises that the interventions required, newborn screening, penicillin prophylaxis, routine vaccination, malaria prevention, and hydroxyurea, are all low-cost, and all can be delivered through Nigeria’s existing primary healthcare infrastructure if the political and financial commitment is made.

Dr. Nneoma Achebe, speaking at the Centre of Excellence for Sickle Cell Disease Research and Training at the University of Abuja, framed the challenge in terms of the country’s broader health priorities. Nigeria is the only country in the world where both the number and the proportion of sickle cell births are growing year on year. That trajectory will not change without deliberate national policy intervention.

Frequently Asked Questions

Why does Nigeria have the most sickle cell disease cases in the world?

Nigeria has the highest sickle cell burden globally because of the high prevalence of the sickle cell trait in the population, directly linked to centuries of exposure to malaria. 

The sickle cell gene evolved as partial protection against malaria, meaning populations in malaria-endemic regions carry it at higher rates. In some Nigerian communities, up to 25 percent of adults carry the trait. Combined with Nigeria’s large population and high birth rate

Can sickle cell disease be cured?

Sickle cell disease can be cured through bone marrow transplantation and, more recently, through gene therapy approaches. However, these treatments are extremely expensive, with gene therapy costing up to $3.1 million per course in the United States, and are not accessible to the vast majority of Nigerian children. 

The more immediate and realistic public health goal is preventing the complications and deaths that currently occur through affordable existing interventions including newborn screening, penicillin prophylaxis, vaccinations, malaria prevention, and hydroxyurea therapy.

What is hydroxyurea and why is it important for sickle cell patients in Nigeria?

Hydroxyurea is an oral medication that is the most effective disease-modifying drug currently available for sickle cell disease. It reduces the frequency and severity of pain crises, lowers the risk of stroke, and significantly improves life expectancy. In high-income countries, it is widely prescribed. 

In Nigeria, it remains severely underutilised because of cost, limited availability in hospital formularies, inadequate prescriber knowledge, and the fact that it is not covered by the National Health Insurance Scheme.