Nigeria continues to record one of the highest burdens of sickle cell disease (SCD) globally, with approximately 150,000 infants born with the condition annually, according to the Federal Ministry of Health and Social Welfare. This accounts for a significant share of the global burden. Despite decades of public campaigns encouraging genotype testing and informed marriage decisions, health experts say awareness has not translated into adequate care, early diagnosis, or improved quality of life for those living with the disease.
Beyond Genotype Awareness
For many Nigerians, discussions around sickle cell disease often focus on genotype compatibility and preventing new births. However, Dr. Happiness Akinde, a medical doctor, emphasized that public health conversations must also prioritize the millions already living with the condition. “Genotype awareness has been extremely important because it helps prevent new cases of sickle cell disease through informed reproductive decisions. However, there is a growing recognition that awareness efforts should also focus on people already living with the condition,” she said.
Dr. Akinde explained that education alone does not prevent sickle cell crises. Even patients who carefully follow medical advice can experience painful episodes triggered by infections, dehydration, physical or emotional stress, poor sleep, and other factors. Reducing the frequency of crises requires a combination of patient education, preventive treatment, reliable healthcare services, and strong social support systems. She added that conversations around hydration, infection prevention, medication adherence, nutrition, mental health, routine screenings, and early recognition of complications deserve as much attention as genotype counselling.
The Hidden Cost of Living with Sickle Cell Disease
Beyond medical challenges, socioeconomic realities worsen outcomes for many patients. Dr. Akinde noted that many families struggle to afford medications, transportation to hospitals, and routine laboratory investigations. Others live far from healthcare facilities or lack health insurance coverage, making regular care difficult. “Effective management requires more than personal responsibility. It requires a healthcare system that supports patients consistently,” she said.
Essential medications such as folic acid, antibiotics, pain-relieving drugs, and hydroxyurea—a disease-modifying therapy widely recommended for sickle cell disease—remain inaccessible to many patients due to cost and availability challenges. As a result, many people seek care only when complications become severe rather than receiving preventive treatment that could improve long-term outcomes.
Healthcare System Gaps
Dr. Akinde explained that weaknesses within the healthcare system continue to affect outcomes. Primary healthcare workers, often the first point of contact for patients, may lack adequate training in sickle cell management, leading to delayed diagnosis of infections, poor follow-up care, and inadequate pain management. Some patients face delays in emergency treatment because healthcare providers underestimate the severity of sickle cell pain or are unfamiliar with recommended care protocols.
Persistent misconceptions about the disease include beliefs that crises result solely from poor self-care or that people living with the condition cannot live successful lives. Some patients face stigma when seeking treatment because their pain is often doubted, while reliance on traditional remedies and delayed hospital visits can worsen complications.
Poverty, Gaps in Prevention
Halimat Jimoh, a nurse and professional midwife, reiterated that poverty, limited healthcare access, and weaknesses within primary healthcare facilities contribute significantly to recurrent sickle cell crises. “I have seen families who understand their child’s condition but simply cannot afford transportation to health facilities, medications, laboratory investigations or regular follow-up appointments,” she said.
Ms. Jimoh believes one of Nigeria’s biggest failures is waiting until marriage discussions begin before educating people about genotype compatibility. She argued that genotype education should begin much earlier through schools, adolescent health programmes, and routine reproductive healthcare services. She also identified major gaps during pregnancy and after delivery. Many pregnant women undergo genotype testing but receive little counselling about the implications for future pregnancies and their children. More concerning is the absence of routine newborn screening across most health facilities. “Too many babies leave health facilities without any form of newborn screening, meaning families only discover the child has sickle cell disease after repeated illnesses and hospital admissions,” she said.
Although babies with sickle cell disease often appear healthy at birth, organ damage can begin long before obvious symptoms emerge. As foetal haemoglobin gradually decreases during infancy, sickling becomes more pronounced, potentially affecting organs such as the spleen even before painful crises occur. “Waiting until a child starts having repeated crises means we have already missed an important window to prevent complications and improve long-term outcomes,” she said.
Newborn Screening
Globally, newborn screening is recognized as one of the most effective strategies for reducing childhood deaths associated with sickle cell disease. Early diagnosis allows healthcare workers to monitor affected children closely, educate caregivers, prevent infections, and detect complications before they become life-threatening. Yet routine newborn screening remains largely unavailable across much of Nigeria. According to Ms. Jimoh, inadequate funding, poor infrastructure, shortages of trained personnel, and weak referral systems have prevented the intervention from becoming standard practice nationwide.
What Nigeria Must Do
For both experts, reducing the burden of sickle cell disease will require coordinated action across the healthcare system. Ms. Jimoh identified three priority interventions: strengthening genotype education and counselling before conception, implementing nationwide newborn screening programmes, and improving primary healthcare services to provide continuous follow-up care and caregiver education.
Dr. Akinde advocated a broader approach that includes expanding newborn screening, improving access to affordable medications such as hydroxyurea, strengthening primary healthcare systems, training healthcare workers, and ensuring universal access to emergency care. Both experts agreed that sickle cell disease must no longer be treated as a neglected condition. Instead, it should be recognized as a major public health priority requiring sustained investment, stronger policies, and improved healthcare access. With better diagnosis, affordable treatment, and consistent support, people living with sickle cell disease can live longer, healthier, and more productive lives.
The theme for this year’s World Sickle Cell Day, “Closing the Survival Gap: Equity in Sickle Cell Disease,” emphasizes global and local action to improve support, care, and awareness for patients, while encouraging stronger advocacy for better health outcomes.
