Alimosho General Hospital in Lagos has launched a powerful advocacy campaign against a hidden driver of Nigeria’s devastating sickle cell disease (SCD) crisis: the rampant misdiagnosis of genotype results by unreliable medical laboratories. At an event marking World Sickle Cell Day, the hospital brought together healthcare professionals, patients, and stakeholders to shine a light on how inaccurate testing contributes to the birth of more children with the disease and called for urgent, systemic reforms to protect families.
Nigeria is the epicenter of the global sickle cell burden. An estimated 150,000 children are born with SCD each year, and a staggering 25% of the adult population—around 50 million people—are carriers of the sickle cell trait. The disease is responsible for up to 50% of deaths in those with its most severe form, and many children do not survive to their fifth birthday. While SCD is a genetic disorder, experts are now highlighting that its persistently high prevalence is being actively fueled by a crisis of confidence in premarital genotype testing.
The Hidden Epidemic: How Misdiagnosis Shatters Lives
For many Nigerian couples, premarital genotype screening is a responsible step taken to avoid the heartache of having a child with sickle cell disease. They trust the results given to them, only to face the shocking and devastating reality years later when a child is born with SCD. This nightmare scenario is alarmingly common, driven by a lack of regulation and poor standards in many medical laboratories.
A recent study revealed the shocking scale of the problem: over 32% of parents of children with SCD had received at least one incorrect genotype diagnosis before having their child. Another study found misdiagnosis rates as high as 28% in fathers and 18% in mothers of children with the disease. The primary culprits are often private laboratories that use outdated and unreliable testing methods like alkaline hemoglobin electrophoresis without proper controls or confirmation. This method is known to be less accurate than the gold-standard High-Performance Liquid Chromatography (HPLC), which is rarely used in many facilities.
The consequences are catastrophic, extending far beyond the health of the child. It can sow deep marital distrust and break homes apart, often under the false assumption that one partner was dishonest about their status.
One father, whose son was diagnosed with SCD after suffering a stroke, shared his painful experience in a Nigerian study: “I was very angry when I realized my son has sickle cell anaemia and I went to that private laboratory to fight. My wife knew she is HbAS and I went to this lab before marriage and was given a result of HbAA. I realised I am HbAS after re-testing… There has been a lot of pressure from my parents for us to have more children but I cannot handle another child with SCD.”
This personal story captures the emotional, psychological, and financial turmoil that a single wrong test result can unleash upon a family.
Alimosho Hospital’s Call to Action
At the awareness event themed “Tell it loud; Share, celebrate, advocate,” Dr. Adebukola Orolu, a consultant haematologist at Alimosho General Hospital, directly addressed this crisis. She emphasized that inaccurate lab testing is a major factor in why the number of children born with sickle cell disease is not decreasing, despite widespread awareness campaigns.
The hospital is calling for a multi-pronged approach to tackle the issue:
- Increased Government Funding: To equip public hospitals with modern, reliable diagnostic tools like HPLC machines and to subsidize the cost of accurate testing.
- Regulation of Laboratories: A national policy is urgently needed to enforce regulatory oversight of all medical laboratories, particularly private ones, to ensure they adhere to strict quality standards.
- Public Education: To inform citizens about the different types of genotype tests and to empower them to demand accurate and confirmed results.
- National Newborn Screening: Experts are universally calling for a coordinated national newborn screening program. Early detection allows for immediate intervention, such as administering prophylactic penicillin and providing crucial counseling to parents, which can drastically reduce infant mortality.
The Broader Battle: Stigma, Cost, and Care
Beyond diagnosis, patients—often called “warriors“—and their families face a daily battle against the disease itself and the societal challenges that come with it. The financial burden is immense, with the cost of routine care, emergency hospitalizations, and advanced treatments like bone marrow transplants (which can cost up to $50,000) being far beyond the reach of most Nigerians. Compounding this, sickle cell disease is often not covered by health insurance, forcing families to pay out-of-pocket for everything.
There is also a severe shortage of specialists, with fewer than 100 haematologists serving the entire country, a problem worsened by the “Japa” brain drain syndrome. This leaves many patients without access to expert care. Furthermore, social stigma remains a painful reality. Professor Adeyinka Falusi, a leading advocate, has stated that many Nigerians with sickle cell are “frustrated, confused, and dying from stigma,” as they are often unfairly blamed for their condition.
Conclusion
The initiative by Alimosho General Hospital represents a critical shift in the fight against sickle cell disease in Nigeria. It moves the conversation beyond just awareness of the disease to a direct confrontation with the systemic failures that perpetuate it. While sickle cell disease is a genetic reality, the continued birth of children to couples who believed they were safe is a man-made tragedy fueled by a broken diagnostic system.
The call for regulated laboratories, national newborn screening, and robust government support is not just a plea for better healthcare; it is a demand for a future where no parent has to endure the preventable shock and lifelong burden of a misdiagnosis.
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