Revelations from stakeholders have shown that more Nigerian children are increasingly becoming victims of sickle cell disease (SCD) due to misdiagnosis and ignorance.
Citing studies and hospital records, the experts asserted that over 150,000 children are born annually with the disease.
On its part, the federal government said that over 150,000 Nigerian children are born with the gene annually
In a statement issued to mark the World Sickle Day, the deputy director of Information and Public Relations, Federal Ministry of Health and Social Welfare, Mr Alaba Balogun, said “currently, 25% of
Nigerian adults carry the sickle cell gene, and the country records approximately 150,000 infants annually due to SCD representing around 8% of total infant mortality. Survivors often suffer chronic complications, including end organ damage, stroke and increased susceptibility to infections. The psychosocial and economic burden is immense, impacting education, employment, mental health and social inclusion.”
Sickle Cell Disease is a severe, inherited blood disorder affecting nearly 100 million people globally, with the highest burden found in sub-Saharan Africa. It accounts for over 50% of deaths among individuals with the most severe form (Hb SS) and remains the most prevalent genetic condition in the WHO African Region. In Nigeria, it contributes significantly to both childhood and adult mortality.
The disclosures came on Thursday as Nigeria joined the global community to mark World Sickle Cell Day.
World Sickle Cell Day is observed annually on June 19 to raise awareness about Sickle Cell Disease (SCD) and promote the importance of its management.
The disclosures came from the industry players and top officials of the Federal Ministry of Health in separate interviews with LEADERSHIP Weekend, as Nigeria joined the global community on Thursday to mark World Sickle Cell Day.
The experts also disclosed that 25 per cent of Nigerian adults carry the sickle cell gene.
World Sickle Cell Day is observed annually on June 19 to raise awareness about Sickle Cell Disease (SCD) and its management.
Couples By Wrong Genotype Test Results
Some parents, who shared their experiences of raising children with the disease, said their ordeals would have been avoided if they had not been misled by wrong results from the tests they conducted before marriage.
A mother of three from Dagbana community in the Federal Capital Territory (FCT) recounted to LEADERSHIP Weekend how she and her husband were certified genotype-compatible before they got married, only to discover their real status when their last child was found to be living with the disease.
The woman, who sought anonymity, said, “We did the required genotype tests before our wedding as the church requested. My result showed I was AA, and my husband’s was AS. So, we thought we were fine. But our third child kept falling ill constantly, unlike the older two. It was after several hospital visits that we were told the child was SS.”
She described the experience as emotionally devastating, saying that her pain and her child’s suffering could have been avoided if the initial genotype test had been accurate.
“We were misdiagnosed, and now we are left to deal with the consequences,” she lamented.
Mrs. Mary Ukaibe, a resident of Nyanya in the FCT, also shared her experience of false genotype results. She had been told she was AA, but a more recent test revealed she was AS.
“Fortunately for me, my husband is AA. But imagine if he were also AS and we had no idea because of that wrong result; we could have had children with sickle cell. It’s frightening,” she said.
These families are among countless others across Nigeria who are bearing the painful consequences of genotype misdiagnosis.
Reacting to the development, the president of the Association of Medical Laboratory Scientists of Nigeria (AMLSN), Dr. Casmir Ifeanyi, explained the link between genotype misdiagnosis and the increasing number of children born with sickle cell disease in the country.
Quacks, Fake Reagents, Poor Lab Testing Environment To Blame
Dr. Ifeanyi told LEADERSHIP Weekend that a poorly regulated medical laboratory ecosystem, dominated by quacks, unqualified personnel and substandard reagents, had led to a surge in false genotype results, especially among couples seeking premarital testing.
“Misdiagnosis occasioned by the menace of quacks and charlatans in medical laboratory testing is contributing to the rising number of sickle cell births in Nigeria. This problem is widespread among the upper and middle classes, who often undergo genotype testing before marriage but end up receiving wrong or fake results,” he said.
According to him, many couples are erroneously informed that they are genotype-compatible (such as AA) and go ahead with marriage, only to discover later they are both carriers (AS) after giving birth to children with sickle cell disease.
The AMLSN president said this was not limited to private laboratories but widespread in both government and private health facilities, driven by uncalibrated equipment, fake reagents and a general lack of oversight.
“I personally went into shops recently to source reagents for electrophoretic genotyping and discovered that many of the products in the market were fake. If a professional like me could nearly be misled, imagine the risk to unsuspecting practitioners who lack the technical knowledge,” Dr Ifeanyi said.
He called on regulatory bodies, particularly the Medical Laboratory Science Council of Nigeria (MLSCN), to take urgent action on equipment calibration, reagent validation and enforcement of professional standards.
According to him, all medical laboratory scientists across Nigeria must join hands to fight the menace of quackery, which he described as a serious public health threat.
When LEADERSHIP Weekend contacted MLSCN on its efforts to curb poor diagnosis by practitioners, it insisted that an official letter be submitted before it would speak on the issue.
Dr Ifeanyi also urged civil society organisations (CSOs), religious institutions and traditional rulers to intensify public education on the dangers of marrying two sickle cell carriers. While acknowledging the progress made in mandatory genotype screening before religious marriages, he said the prevalence of SCD continues to rise at an estimated rate of 3–4 annually.
Sharing a personal experience, Dr. Ifeanyi recounted how a young AS couple ignored the advice from family, friends, and church leaders and went ahead to get married.
He stressed the need for intensive public enlightenment, noting that many young people remain unaware or dismissive of the genetic risks.
“We must reconstruct our society through science-based awareness and robust regulation of testing,” he emphasised.
“We have capable institutions like the Nigerian Institute of Medical Research (NIMR) and the Nigerian Institute of Pharmaceutical Research and Development (NIPRD), yet funding for research into sickle cell solutions is minimal. Donor agencies supporting malaria and HIV should also invest in sickle cell research because of its endemic nature in Nigeria,” he said.
The AMLSN president further called for a multi-sectoral war against fake reagents, substandard laboratories, and unchecked quackery, warning that unless the trend is reversed, millions of Nigerian children will continue to be born into pain and lifelong illness due to preventable errors.
Intending Couples, Beware Of Unqualified Test Labs
For his part, the deputy director, Medical Laboratory Services at the National Hospital Abuja, Anthony Ilegogie, cautioned Nigerians against relying on unqualified laboratories for genotype testing, stressing that the condition of a person’s genotype does not change and should not require repeated testing when done correctly.
Speaking on the issue of conflicting genotype results often encountered by patients, Ilegogie clarified that such discrepancies are largely due to human errors caused by poorly trained personnel and poorly equipped laboratories.
“It’s not true that genotype test must be done several times to be accurate. Genotype is your gene type; it doesn’t change. If the right equipment is used and trained professionals carry out the test, the result will remain the same, no matter which standard laboratory you go to,” he said.
He acknowledged that while errors in genotype interpretation do occur, they are often the result of mistakes made by individuals who lack proper training or operate outside professional standards.
“All manner of people go into the lab business. At the end of the day, if a patient falls into their hands, they are likely to give a wrong result,” Ilegogie warned.
He further noted that modern testing methods have moved away from outdated techniques and now rely on more precise technologies that improve accuracy.
“These new methods are highly reliable. So if the test is done right the first time in a credible lab, there should be no need for repetition,” he said.
LEADERSHIP Weekend learned that Nigeria bears the highest burden of the genetic disorder globally, with about 25 per cent of its adult population carrying the sickle cell gene and approximately 150,000 infant deaths annually attributed to the disease, representing nearly eight per cent of all infant mortality in the country.
Despite this, Dr. Ifeanyi lamented that research into local solutions for managing SCD remains neglected.
According to the special adviser on sickle cell to the coordinating minister of health, Professor Obiageli Nnodu, an estimated four million Nigerians are currently living with sickle cell disease.
She said the figure was drawn from the 2018 National Demographic Health Survey, which found that the condition affected 1.5 to 3 per cent of Nigerians across various geopolitical zones.
“Sickle cell disease is not just a national concern; it is a global health challenge,” Prof. Nnodu said, citing World Health Organisation (WHO) estimates that the global SCD population is 7.7 million.
Nnodu stressed the urgent need for policy reform, legislative support, and coordinated non-governmental organisations’ efforts to strengthen advocacy efforts within Nigeria and across Africa.
“We must unite under a common front to amplify our voices and create real impact, far beyond what we can achieve individually,” she stated.
Government Committed To Reducing SCD Burden
Meanwhile, the Federal Ministry of Health has reaffirmed its commitment to reducing the burden of the disease through robust awareness campaigns, improved early diagnosis, and expanded access to quality care.
“SCD contributes significantly to childhood and adult mortality in Nigeria, yet it remains both preventable and manageable with the right policies, awareness, and clinical interventions, the ministry’s deputy director of information and public relations, Alaba Balogun, said.
“Sickle Cell Disease is not just a health issue; it is a societal challenge that demands collective responsibility.”
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