Africa is the global epicenter of sickle cell disease, a genetic blood disease that, while relatively rare, is devastatingly known across the continent. In Nigeria, where research suggests sickle cell disease is most common, about 150,000 children are born with the disease every year. In contrast, in the United States, about 100,000 people suffer from it, most of whom are of African descent.
In this oil-rich country, plagued by underinvestment in health care and wide income inequality, doctors and nurses struggle to keep children alive. Nearly one in two children in Nigeria with sickle cell disease die before their fifth birthday, according to a September study in The Lancet that examined births and deaths between 2003 and 2013. Researchers estimate that 35,000 children under the age of 5 died of sickle cell each of those years.
Simply screening all newborns for sickle cell could significantly reduce premature death, but such testing remains rare in Nigeria and across Africa. Similarly, a 12 cents a day regimen of three drugs could reduce the death toll, but that too is often unattainable in Nigeria, where two in five people live on less than $1.90 a day.
On the other hand, the United States, one of the world’s richest countries, has the technologies and ability to better care for people with the disease. And life expectancy for them has improved in recent decades as Americans live in their 50s with the disease. Yet the US health care system, marred by stark racial inequalities, often fails to provide basic care for people with sickle cell disease.
“The inequality in survival among sickle cell patients in high- and low-income countries is an injustice,” said Dr. Shehu Abdullahi, an associate professor of pediatrics at Aminu Kano Teaching Hospital and Bayero University in Kano.
The variable income that Sadiya’s parents earn is not always sufficient to meet her medical needs. The family sometimes has to choose medicine over food. During almost weekly pain crises, she cries all night and has trouble walking. Her mother worries that she will end up like the daughters she lost when she was 9, 7 and 6 years old.