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The treatment of sickle cell disease is on the cusp of a historic breakthrough, with makers of two gene-based treatments for the debilitating blood disorder hoping for regulatory approval this year.
But for those with sickle cell in sub-Saharan Africa, where more than 60% of the 120 million people worldwide live with this disease, there is little cause to celebrate. A potential cure that could save them from severe illness and early death will exist — but its expected multimillion-dollar price tag will be far out of reach.
Sickle cell disease throws the issue of access to health care into particularly stark relief because it is a major cause of early death and disability among some of the world’s most deprived populations, from Africa to Black communities in the U.S.
The vast majority of those affected by the genetic disorder — in which misshapen blood cells cause anemia, organ damage, severe pain, stroke, and early death — have African ancestry. Indeed, according to the World Health Organization, around 1,000 babies are born every day in Africa with two copies...