Speaking with PT Health Watch to commemorate World Sickle Cell Day, medical and maternal health experts identified critical gaps across Nigeria’s healthcare system, including inadequate newborn screening, poor access to treatment, weak primary healthcare services and persistent misconceptions about the disease.
Every year on 19 June, the world marks World Sickle Cell Day to raise awareness about a condition affecting millions globally. Yet despite decades of public campaigns encouraging genotype testing and informed marriage decisions, Nigeria continues to record one of the highest burdens of sickle cell disease (SCD) in the world.
While genotype awareness campaigns have become common in schools, churches, mosques and healthcare facilities, health experts say awareness has not translated into adequate care, early diagnosis or improved quality of life for people already living with the condition.
Speaking with PT Health Watch to mark World Sickle Cell Day, medical and maternal health experts highlighted major gaps in Nigeria’s response to the disease, including weak newborn screening, limited access to treatment, under-resourced primary healthcare and persistent misconceptions.
For many Nigerians, discussions around sickle cell disease often focus on genotype compatibility and preventing new births affected by the condition.
However, Happiness Akinde, a medical doctor, said public health conversations must also prioritise the millions already living with the disease.
“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.
Ms Akinde explained that although education remains important, knowledge alone does not prevent sickle cell crises.
She noted that even patients who carefully follow medical advice can still experience painful episodes triggered by infections, dehydration, physical or emotional stress, poor sleep and other factors.
According to her, 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.
Beyond medical challenges, Ms Akinde noted that socioeconomic realities continue to worsen outcomes for many patients.
She said many families struggle to afford medications, transportation to hospitals and routine laboratory investigations required to monitor the disease.
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, she noted, many people seek care only when complications become severe rather than receiving preventive treatment that could improve long-term outcomes.
Ms Akinde explained that weaknesses within the healthcare system continue to affect outcomes for people living with sickle cell disease.
She noted that 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.
She added that some patients face delays in emergency treatment because healthcare providers underestimate the severity of sickle cell pain or are unfamiliar with recommended care protocols.
She also highlighted persistent misconceptions about the disease, including beliefs that crises result solely from poor self-care or that people living with the condition cannot live successful lives.
In addition, she said that some patients face stigma when seeking treatment because their pain is often doubted, while reliance on traditional remedies and delayed hospital visits can further worsen complications.
Halimat Jimoh, a nurse and a 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.
According to her, many pregnant women undergo genotype testing but receive little counselling about the implications for future pregnancies and their children.
More concerning, she said, 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.
