Sickle Cell Families Bear the Cost of Late Diagnosis, Gaps in Treatment

What the report says

In a report from Nile Post, families affected by sickle cell disease in Uganda are described as facing heavy costs from late diagnosis, uneven access to medicine and limited public understanding of the condition. The story centers on Faridah Nakalanzi and Francis Ssemapala of Ttamu in Busimbi Division, Mityana Municipality, whose eight children have included five born with sickle cell disease. Two of those children have died, including a 15-year-old daughter who died after becoming critically ill and was taken to Mityana General Hospital.

The family says repeated illness, hospital visits and shortages of medicine have created financial and emotional strain. Ssemapala said health facilities sometimes provide medicine for only one child, forcing parents to find money elsewhere. Nakalanzi said the burden led her to stop having more children. Their experience is presented as part of a wider pattern in Uganda, where children are often diagnosed only after symptoms become serious, despite sickle cell disease being detectable through blood screening.

Health workers and advocates quoted in the article say awareness remains low and stigma persists, with some communities still linking the disease to witchcraft. Ruth Nakyejwe of Mityana General Hospital said more early screening is needed, while religious leaders in Mityana urged stronger government action beyond pre-marriage testing.

The Ministry of Health, according to the report, introduced newborn sickle cell screening in February this year and says it is trying to close gaps in diagnosis and treatment. The article adds that sickle cell prevalence is especially high in parts of eastern and northern Uganda, and that advocates want more funding for screening, care and long-term support so early detection leads to better outcomes.