The Avoidable Tragedy of Sickle Cell Disease in Nigeria: An unacceptable reality

•By Chidubem Egboluche, DVM, MPH

Why must 95% of children born with Sickle cell disease still die before their fifth birthday. What is really wrong?

Who is affected?

Nigeria accounts for 100,000–150,000 newborns living with sickle cell disease (SCD) annually (33% of the global burden of SCD), making Nigeria the epicenter of sickle cell disease worldwide. These newly born babies, before they even have a chance of beginning life, are dealt with an unbearable hand. They live at the constant risk of unimaginable pain, long stretches of their lives spent in cold and unfeeling deteriorated hospital spaces. The life they face is strenuous, and yet this is what nearly 150,000 newborns living with sickle cell disease in Nigeria have to endure. It is also disheartening that almost 95% of these children die before their fifth birthday.

Complications from sickle cell disease include but are not limited to acute chest syndrome, end organ damage, weakness or numbness of limbs, blindness, pulmonary hypertension, leg ulcers, and pregnancy complications.

On one side, the affected have to live with this harrowing experience, stigma, lack of access to health facilities and services.

On the other side, the parents face not only the constant fear of losing their child to SCD but also the guilt of having to watch this child they brought into this fate, knowingly or unknowingly, suffer through this lifelong disease.

Must Read:- Why must 95% of children born with Sickle cell disease still die before their fifth birthday. What is really wrong?

The economic burden of SCD could be quite enormous to the family of the individual with SCD and the nation at large. Although SCD is a genetic disease, the socio-demographic characteristics of the host person play a significant role in predicting the disease trajectory's prevalence and direction. There is a web of connectivity between the causal risk factors and the socio-demographic characteristics of the host. Nearly 70% of the SCD population in Nigeria is in the northern part of Nigeria. The unavailability of resources to access information, genetic counselors, and education all play a role in the high prevalence of SCD in the northern part of Nigeria.

Efforts to control the trend

These staggering statistics have ranked Nigeria as a black sheep among the community of nations.

Annette Akinsete, the chief executive officer of Sickle Cell Foundation Nigeria, a non-governmental organization that is focused on preventive and curative measures for sickle cell disease, was quoted in the Nigerian newspaper PREMIUM TIMES saying;

“The government comes up with policies and plans, but they need to work with advocates for implementation. Non-Governmental Organizations are the ones picking the slack for the government.

In 2020, a bill proposed by Sen. Sam Egwu sought to curb sickle cell by preventing carriers of the diseased gene (AS and SS) from marrying other carriers. The bill also seeks to facilitate uniformity and standardized care for those living with the disease.

Proper sensitization of the rural dwellers and accessibility of blood testing services, which this bill seeks to enhance, will lead to an appreciable reduction in the number of new cases in a short time.

But do you know what?

Since May 2020, when the bill passed the second reading, with a committee tasked to report back to the house by June, nothing has been heard of the bill two year after.

What can be done?

To combat this high incidence of sickle cell, genotype testing should be required for everyone. The prevalence of the disease can be decreased if people have the knowledge to make informed decisions about the person they want to have a child with. Early detection helps with better care coordination to prevent complications. The government should also implement a national SCD screening program.

In Nigeria, the health insurance scheme is still in its infancy. When patients go to the hospital, they are told that their insurance does not cover these medicines. So until the government steps in with the right policy backed by law, people with sickle cell should be treated free. Therefore, programs and policies that would encourage health insurance coverage should be implemented. Public enlightenment on the need for health insurance would boost adoption.

There is a need to appropriately engage the government in the country's health sector by establishing close ties with the leadership of both the executive and the members of the legislative arm of the government. It will, however, lead to better results through better utilization of resources, more robust political will, greater mutual accountability, and more research in the area of Sickle Cell Disease, and these efforts will culminate in reduced morbidity and mortality caused by the disease.

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Chidubem Egboluche is a veterinary doctor, and a health research analyst with a master’s in public health and six years of progressively responsible experience in the epidemiological and biostatistics field, leading agile quality assurance and epidemiologic data analysis efforts. I help the medical/public health field make data-driven decisions through bioinformatics and biostatistical analysis.