In Nigeria, as in other countries of the world, June 19 every year is designated as Sickle Cell Day . The international awareness day is observed annually with the aim of increasing public knowledge and understanding of sickle cell disease (SCD), and the challenges experienced by patients, their families and caregivers
While many global health issues receive widespread attention, sickle cell disease continues to be overlooked or treated as a personal problem.
As we mark World Sickle Cell Day today, it’s time to shine a light on this crisis that disproportionately impacts Nigeria, the notorious sickle cell capital of the world.
Sadly, in our view, an estimated 40 million Nigerians carry the sickle cell gene, while 150,000 babies are born with sickle cell anemia each year. That’s half of all new cases of severe hemoglobin disorders worldwide.
To put this in perspective, the sickle cell trait is more than six times more common in Nigerians than the cystic fibrosis gene is among northern Europeans or the Tay-Sachs gene among Ashkenazi Jews.
Yet, despite this immense burden, public awareness and access to proper care remain woefully inadequate.
In most Nigerian communities, the disease is still largely misunderstood or unknown. This lack of knowledge has devastating consequences – only five per cent of children born with SCD in Nigeria live past the age of 10.
It is instructive to note that checking for sickle cell is simple. A genotype test will show whether a person has the carrier gene (AS), and as long as carriers do not partner with each other, no child will be born with sickle cell
Sickle cell disease is a cruel inheritance, a genetic disorder that causes red blood cells to become sickle or crescent-shaped. These misshapen cells can stick to blood vessel walls, blocking oxygen flow and leading to excruciating pain episodes, organ damage, and even stroke or death.
While treatment like medication, blood transfusions, and bone marrow transplants can help manage symptoms, the disorder remains incurable and life-threatening.
The good news is that SCD is preventable through education and screening. A simple genotype test can identify carriers of the sickle cell gene.
With proper counseling and awareness, carriers can make informed decisions about family planning to avoid passing on this disorder to their children.
Sadly, such measures are not being taken in Nigeria. Many couples knowingly forge test results to get married, ignoring medical advice and risking the lives of their future children. This is unacceptable and highlights the urgent need for policy intervention.
We call on the federal government to make sickle cell testing mandatory for all newborns and aspiring couples. Testing must be accessible, free, and compulsory.
Penalties should be imposed on couples who willfully conceal their carrier status. Widespread awareness campaigns are also crucial to dispel myths and ensure communities understand the risks and available preventative measures.
But awareness alone is not enough. Nigeria desperately needs improved access to comprehensive sickle cell care. The government should establish dedicated sickle cell emergency care centers and incentivize more healthcare workers to specialize in treating this disorder.
Most critically, Nigeria requires affordable access to potentially curative treatments like bone marrow transplants. While expensive, such procedures could save countless lives. The government, private sector, and NGOs must collaborate to establish bone marrow transplant facilities in every geopolitical zone and subsidize costs for low-income families.
Funding for sickle cell research is also vital to advance treatments and work towards a cure. Nigeria should allocate significant resources to this endeavor, positioning itself as a global leader in conquering this disease that so profoundly impacts its citizens.
The 2024 World Sickle Cell Day theme of “Hope Through Progress: Advancing Sickle Cell Care Globally” is a reminder of the work that lies ahead. Progress will require a multi-faceted approach – policy changes, public education, improved healthcare access, research investment, and global collaboration.
For too long, sickle cell disease has been the neglected stepchild of the global health agenda.
But as Nigeria bears such a disproportionate burden, we cannot afford to let this crisis continue hiding in plain sight. It is time for decisive action to protect the lives of millions of Nigerians impacted by this devastating disorder.
