Sickle cell disease contributes nearly 16 percent of all deaths among children below five years in Uganda, the Ministry of Health has revealed, highlighting the growing impact of a condition health experts say remains a major but neglected public health challenge.
Health officials estimate that about 20,000 babies are born with sickle cell disease in Uganda every year, with between 6,000 and 9,000 dying before their fifth birthday.
Speaking on June 18 ahead of World Sickle Cell Day, the Director General of Health Services, Dr Charles Olaro, said improving survival among children living with the disease is essential in reducing Uganda’s under-five mortality rate.
“It is estimated that about 20,000 newborns are born each year with sickle cell disease and about 6,000 to 9,000 of them die before their fifth birthday. This contributes to 16 percent of under-five mortality which is a slight increase from the 2024 statistics [15 percent],” Dr Olaro said at the Ministry of Health headquarters in Kampala.
He added that an estimated six to seven million Ugandans carry the sickle cell trait, increasing the risk of children inheriting the disease.
“If we have to change the trajectory of under-five mortality, then it means that we have to improve the care and survival of children who are living with sickle cell disease. Also approximately six to seven million people nationwide are carrying the sickle cell trait which puts every newborn at risk of transmission,” he said.
Uganda is ranked among the countries with the highest number of people living with sickle cell disease globally, a burden attributed to the widespread presence of the sickle cell gene.
The Ministry of Health estimates that about 13 in every 100 Ugandans carry the sickle cell trait, with prevalence rising to about 20 percent in some parts of northern and eastern Uganda.
Dr Sarah Kiguli, a paediatrician at Mulago Hospital, said the disease is now spread across the country, although some regions record higher prevalence rates.
“The high-burden regions include Acholi, Lango, central Uganda and south-western Uganda,” she said.
To reduce new infections, the Ministry of Health has intensified newborn screening and promoted premarital testing to help couples understand their genetic status before having children.
Dr Mariam Ajambo, the National Coordinator for Sickle Cell Disease at the Ministry of Health, said awareness of one’s sickle cell status remains critical in preventing transmission.
“Before anyone gets a child, they should know their partner’s status regarding the sickle cell trait so that carriers do not marry fellow carriers. That is the ultimate way through which we can fight this disease and eradicate it,” Dr Ajambo said.
She added that the ministry is expanding community screening services, particularly in rural and hard-to-reach areas, to improve early diagnosis and access to treatment.
Treatment gaps
Health officials say access to essential medicines remains a key challenge in managing sickle cell disease.
Dr Olaro said health facilities need to include Hydroxyurea, a medicine used to reduce complications associated with the disease, in their annual procurement plans.
“The hospitals have to include it in their plans so as to be considered during the supply of medicines because it is an essential medicine. Once we have accurate data, we can quantify how much Hydroxyurea is needed and the resources required,” he said.
Sickle cell disease is an inherited blood disorder that affects the shape and function of red blood cells, causing complications such as severe pain episodes, anaemia, organ damage and other health problems.
Experts say early diagnosis, access to treatment and increased public awareness are key to reducing deaths and improving the quality of life of people living with the condition.
Data from the 2024 sickle cell disease survey shows varying prevalence levels across the country. East-Central Uganda, covering areas such as Busoga, Bugweri, Bukedi and parts of Teso, recorded a disease prevalence of 1.5 percent, while Mid-North regions of Acholi and Lango recorded 1.3 percent.
Mid-Eastern Uganda recorded 1.2 percent, North-East 1 percent, Central Uganda 0.8 percent and Kampala 0.7 percent. Mid-Western and West Nile regions recorded 0.5 percent, while South Western Uganda recorded 0.2 percent.
According to the 2024 Annual Health Performance Report, sickle cell disease ranks 12th among leading causes of admissions in health facilities, accounting for 1.5 percent of admissions.