Sickle Cell Anemia in Africa: Why Awareness Still Falls Short and What We Can Do

Introduction

Credit: Verywell Health

Sickle cell anemia is one of the most common inherited blood disorders in Africa, yet it remains underdiagnosed, misunderstood, and poorly addressed in public health systems.

Every year, more than 300,000 babies are born with sickle cell disease (SCD) in sub-Saharan Africa, accounting for over 75% of global cases. In parts of the continent, up to 3% of newborns are affected, especially in West and Central Africa.

Tragically, 50% to 90% of children born with SCD in these regions die before their fifth birthday, largely due to the absence of early screening and limited access to essential care like penicillin prophylaxis or hydroxyurea.

Despite its severity, sickle cell disease receives far less attention than other health conditions like HIV or malaria.

Cultural stigma, lack of public education, and limited access to genetic testing have left many families unaware of their risk.

Although the United Nations first recognized sickle cell disease as a global public health concern in 2008 and designated June 19 as World Sickle Cell Day, many African nations still lack comprehensive national strategies for screening, treatment, or education. It’s time to bring sickle cell disease out of the shadows and make it a core part of public health planning across Africa.

What Is Sickle Cell Anemia?

Sickle cell anemia is a genetic blood disorder caused by a mutation in the HBB gene, which alters the hemoglobin molecule responsible for carrying oxygen in red blood cells.

In healthy individuals, red blood cells are round and flexible, allowing them to flow easily through blood vessels. In people with sickle cell anemia, hemoglobin S (HbS) causes red blood cells to become rigid and crescent-shaped. These cells can block small blood vessels and lead to pain, infections, organ damage, and chronic anemia.

The condition is inherited in an autosomal recessive pattern. This means a person must receive two copies of the mutated gene, one from each parent, to develop sickle cell anemia (genotype HbSS).

A person who inherits only one copy is a carrier and has the sickle cell trait (HbAS). Carriers usually do not have symptoms but can pass the gene to their children.

In many parts of Africa, a large number of people carry the trait without knowing it, which makes public education and genetic testing especially important.

Globally, about 4.4 million people live with sickle cell disease and an estimated 43 million carry the trait.

Approximately 400,000 infants are born with the disease each year worldwide, and 75 to 80 percent of these births occur in sub‑Saharan Africa.

In many parts of Africa, a large number of people carry the trait without knowing it, which makes public education and genetic testing especially important.

Why Africa Is at the Epicenter

Africa bears the greatest burden of sickle cell anemia due to a combination of genetic, environmental, and historical factors. In parts of West and Central Africa, carrier rates range from 15 to 30 percent, and in some tribal groups in Uganda such as the Baamba, carrier rates reach as high as 45 percent.

Nigeria has the highest global burden. It is estimated that 150,000 babies are born with sickle cell disease (SCD) annually in Nigeria, representing about one-third of global births with the condition. Roughly 25 percent of Nigerians carry the sickle cell gene, which equates to more than 40 million carriers nationwide.

The high frequency of the sickle cell gene in Africa is rooted in historical exposure to malaria. Individuals with the sickle cell trait (carriers, genotype HbAS) have enhanced resistance to severe malaria, offering a survival advantage in malaria-endemic regions. This has been conserved through natural selection over generations.

However, when two carriers have a child, there is a 25 percent chance the child will have sickle cell disease (HbSS), contributing to high disease prevalence in Africa.

Adding to these challenges, African populations are underrepresented in global genomic research. This limits the development of genetic therapies and treatments tailored to the genetic diversity of African populations. Initiatives like African Ancestry Link's DNA Pilot Program are working to fill this gap.

Africa’s role as the epicenter of sickle cell disease underscores the urgent need for targeted interventions, including expanded genetic testing, sustained community education, and full inclusion of African genomic data in research and treatment development.

Without these measures, the cycle of high prevalence and inadequate resources will continue.

The Awareness Gap

A 2021 study involving 1,423 unmarried adults in Nigeria's Federal Capital Territory found that 92.5% had heard of sickle cell disease, yet their average knowledge was moderate and misconceptions were common. For example, many believed the disease was caused by infections rather than understanding its genetic origin.

Similar findings have emerged across West Africa. Although, public awareness is relatively high, understanding of genotype status and disease inheritance remains limited.

Cultural stigma also plays a role, with some communities attributing the disease to curses or spiritual punishment. These beliefs persist due to a lack of structured education about sickle cell disease in schools, marriage counselling programs, and health institutions.

While June 19 is globally recognised as World Sickle Cell Awareness Day, its impact on health-seeking behaviour in African countries is minimal and short-lived.

A 2023 study using Google Trends data showed that public interest in sickle cell disease only spiked briefly around the awareness day before quickly returning to baseline levels. This suggests that periodic internet campaigns alone are not sufficient and must be complemented by continuous awareness through radio, television, and community-based outreach.

This is because if ignorance persists, the consequences are dire especially for a country like Nigeria. In Nigeria, which has the world’s highest burden of the disease, an estimated 150,000 babies are born annually with sickle cell anemia. Many of these births occur in families where the parents were unaware they both carried the sickle cell trait (HbAS), which greatly increases the risk of having a child with sickle cell disease.

Delayed diagnosis and treatment are also common. Symptoms like severe pain crises or frequent infections are often mistaken for malaria or supernatural afflictions. In rural Ghana, some families turn to traditional healers first, which delays medical intervention and increases the risk of complications or death.

Finally, stigma further deepens the problem. Beliefs that the disease is a curse lead to social isolation of affected individuals. This discourages people from getting tested, seeking treatment, or openly discussing their condition, which adds to the emotional and psychological burden of the disease.

The Role of DNA and Genetic Testing

Understanding the genetic basis of sickle cell anemia is essential to improving outcomes across Africa.

Credit: Healthline

Genetic testing plays a vital role in identifying individuals who carry the sickle cell trait (HbAS). When two carriers have a child together, there is a one in four chance that the child will inherit sickle cell disease (HbSS).

In Nigeria alone, an estimated 150,000 babies are born each year with sickle cell anemia, the highest number in the world. Premarital and early-life screening could significantly reduce this number. Yet, access to affordable testing and public awareness of its importance remain limited across many African countries.

Early diagnosis through prenatal and newborn screening can change the trajectory of a child's life.

When sickle cell is detected shortly after birth, medical interventions such as the use of prophylactic antibiotics, folic acid supplements, and hydroxyurea can begin early, preventing life-threatening complications.

The push for genomic inclusion is just as important. African populations are highly genetically diverse, but African DNA is significantly underrepresented in global genomic databases.

This underrepresentation limits the development of treatments and diagnostic tools that are effective for African patients. Without adequate data from African genomes, researchers may overlook key variations that affect how diseases manifest or how drugs are metabolized.

At African Ancestry Link, we recognize this gap and are committed to bridging it. We are launching a free DNA Pilot Program in Nigeria, Ghana, and Kenya to support early detection, promote genetic literacy, and drive more inclusive health outcomes.

This initiative aims to empower individuals with knowledge about their genetic traits while contributing to broader genomic research that reflects Africa’s unique genetic diversity.

You can learn how to be a part of this important movement toward genomic equity here. Together, we can create a future where African DNA is not only studied but also used to improve health outcomes across the continent.

Conclusion

DNA testing and genomic research should not be considered luxuries in African healthcare. They are essential tools for reducing the burden of hereditary diseases, designing culturally relevant healthcare strategies, and ensuring that no population is left behind in this era of precision medicine.

This is especially true for inherited conditions like sickle cell anemia, where early screening, accurate diagnosis, and tailored treatment can significantly improve outcomes.

Across the continent, there is growing momentum. But for this progress to be meaningful and lasting, African voices must lead the conversation.

Genomic justice means more than including African gene in research. It also means ensuring access to services, fostering local ownership of data and discoveries, and empowering African communities to make informed decisions about their health.