The revelation that no fewer than 50 million Nigerians are living with sickle cell disease (SCD) in Nigeria is alarming. The figure represents approximately one quarter of Nigeria’s population. Sickle cell is a hereditary disease, but the high number of carriers in the country is an indication of human error and ignorance. Kwara State Commissioner for Health, Dr. Amina El-Imam, speaking at a recent one-day seminar to commemorate the 2025 World Sickle Cell Day in the state capital, Ilorin, organised by the Building Hope for Sickle Cell Foundation, called for concerted efforts in advancing care for sickle cell carriers. He advised sickle cell patients not to see their health condition as a death sentence, and called for a multi-faceted approach to address current challenges and promote comprehensive care.
Experts say that sickle cell disease is a debilitating genetic condition, where the blood of carriers turns red blood cells into rigid and fragile, crescent-shaped obstacles. These cells can clog blood vessels, causing severe pain and life-threatening complications. Globally, Nigeria bears the highest burden of the disease, with about two per cent to three percent of the population identified as carriers. Available statistics show that about 150,000 newborns are affected yearly and 50 million people are carrying the sickle cell trait. Studies show that nearly half of affected children die before their fifth birthday, and those who survive face a life expectancy that hovers around 21 years, much lower than the life expectancy of people with SCD in high-income nations, which is 54 years.
There is an urgent need to create more awareness on sickle cell disease to sensitize the public on the symptoms of the disease and where to access treatment. Some Nigerians do not have adequate information about SCD at the moment, with many uninformed carriers confusing it with other diseases and seeking unconventional solutions, which often lead to fatalities. According to medical experts, the SCD causes frequent bone pain crises, a range of complications, such as stroke, swelling of the hands and feet (dactylitis), anemia, leg ulcers, infections, osteonecrosis, and priapism. There is a high prevalence of depression and anxiety, exacerbated by the stigma and stress of frequent hospitalizations. A recent review of prevalence studies estimates a prevalence of depression in people with SCD of around 29-35 per cent, which often disrupts education and career aspirations caused by frequent absences from school or work. It can also hinder academic and professional work.
The SCD awareness campaign must centre on curtailing stigmatisation. SCD patients are exposed to stigmatisation by the public. Stigmatisation contributes to the perpetuation of misconceptions about the sickness, with patients hiding their hemoglobin genotype results and shying away from hospitals at the onset of SCD symptoms. Sickle cell patients often face relationship challenges with partners, who may be uncomfortable with routine health challenges and frequent hospitalization. Some forge their genotype results to get married to unsuspecting partners. The high cost of maintaining the sickness is frustrating to patients, who may be poor. CDC patients also grapple with emotional turmoil. Sickle cell disease patients contend with cost of medications, work demands and other things. They also take care of their sick children and their education.
Although the neonatal screening is effective in identifying and treating sickle cell disease, the screening facilities are not available in many hospitals in Nigeria, leading to late diagnosis and mortalities. The federal government should increase the annual health budget in order to meet the health needs of all Nigerians. Universal health coverage should be vigorously implemented. Its absence has made it extremely difficult for poor families to access adequate medical attention in the country.
We call on Nigerians to test and determine their SCD status because early detection of sickle cell disease makes it easier for supportive care to be given to patients through prescription of prophylactic penicillin, pneumococcal vaccination, and counseling. Therefore, the coordinated national neonatal screening programme should be activated nationwide by the ministry of health to prevent late detection of the ailment. In view of wrong results of the condition emanating from some laboratories, we urge for adequate training and retraining laboratory scientists across the country. Prospective couples are enjoined to carry out their genotype tests in recognized medical laboratories to avoid being issued with fake results.
Nigeria’s high SCD prevalence is unacceptable. It is a big threat to the labour force and the attainment of our Sustainable Development Goals (SDGs). In 2021, the Senate passed the Sickle Cell Bill, aimed at tackling SCD through prevention and control. Sadly, its implementation has been in fits and starts. We urge the federal government to ensure early diagnosis and treatment of the debilitating health condition and save more lives. Without doubt, awareness of the condition, research, and advocacy will curb its prevalence in the country.