As Uganda rolls out mandatory nationwide screening of newborns for sickle cell disease this month, a gene therapy celebrated in the United States and Europe remains financially out of reach for most patients in Africa.
Ayoola Olajide, president of Ikorodu Sickle Cell Club in Nigeria and a person living with sickle cell disease, told SciDev.Net: “For Africa, gene therapy treatment currently exists only on paper.”
According to the World Health Organization, about 515,000 babies are born each year with sickle cell disease, a lifelong, inherited blood disorder. Around 80 per cent of cases occur in Sub-Saharan Africa, where it is a leading cause of deaths among young children.
In Uganda, the Ministry of Health launched a policy this month (9 February) requiring all babies born in health facilities to be screened for the disease at birth, free of charge, in a bid to reduce preventable deaths.
Official figures show an estimated 20,000 Ugandan children are born with the condition each year, with up to 80 per cent dying before the age of five, largely due to delayed diagnosis and preventable complications.