Sickle cell cases decline, but threat persists — WHO

While Uganda has seen a reduction in sickle cell disease (SCD) cases, the World Health Organisation (WHO) and the health ministry warn that the disease remains a critical public health threat, particularly for children. 

Despite progress in detection and awareness, the nation grapples with a persistent burden: Over 500,000 children tested in the past decade yielded 34,000 confirmed cases, indicating both gains and ongoing challenges.

Recent data reveals uneven progress.

In Bukedea district, school screenings identified 249 cases among 1,871 students, a possible surge, while Budaka district reported a decline in suspected cases (from 1,456 in 2023 to 914 in 2024).

Health officials caution, however, that reduced reporting may mask true prevalence.

Stephen Lutoti, the secretary general of the Pharmaceutical Society of Uganda (PSU), emphasised the disease’s grim toll.

“Each year, 25,000 Ugandan babies are born with SCD, and 80% die before age five. Late diagnosis, limited access to care and stigma keep this silent killer thriving.”

PSU vice-president Dr Nuru Mugide highlighted advancements in treatment research. (All Photos by Ibrahim Ruhweza)

Global and regional context

Globally, SCD affects 7.7 million people, causing 34,000 direct deaths annually, with 80% of cases in sub-Saharan Africa. 

Uganda ranks fifth in Africa for disease burden, with 13.3% of children carrying the sickle cell trait.  

A national sickle cell survey conducted in 2014 by the health ministry, in collaboration with Makerere University College of Health Sciences and Cincinnati Children’s Hospital, revealed that Northern Uganda bears the heaviest burden, with a sickle cell trait prevalence of 18.6%, and some communities recording rates as high as 63%.

The east-central region follows with 16.7%, while the mideastern and southwestern regions show 16.5% and 4.1%, respectively.

Prevention and awareness 

In response to the growing concern, the Pharmaceutical Society of Uganda (PSU) has organised a public event, the Sickle Cell Run, to raise awareness and encourage proactive prevention.

The initiative aims to educate communities about the existence and impact of the disease while promoting early testing and genetic counselling.

PSU vice-president Dr Nuru Mugide highlighted advancements in treatment research.

“Continued professional development ensures healthcare workers stay updated on the latest therapies. Operational research is key to developing new drugs.”

PSU treasurer Dr Nicholas Bagwa urged premarital genetic testing.

“Test your blood before marriage. Knowing your status can prevent heartbreak and save lives.”

Despite progress, gaps remain. Experts call for expanded newborn screening, community education, and early treatment. Dr. Bagwa stressed: “The battle is far from over. With awareness and coordinated action, Uganda can reduce this preventable tragedy.”

While detection rates rise, the shadow of SCD lingers—a reminder that vigilance and investment are vital to safeguarding Uganda’s children.