Sickle Cell Disease Causes 16 Percent of Under-Five Deaths in Uganda, Government Says

By Skika Reporter.

Sickle cell disease contributes nearly 16 percent of all deaths among children under the age of five in Uganda, the Ministry of Health has revealed, underscoring the growing burden of a condition that health experts describe as a significant but often overlooked public health challenge.

Health officials estimate that approximately 20,000 babies are born with sickle cell disease annually in Uganda, with between 6,000 and 9,000 dying before reaching their fifth birthday.

Speaking on Thursday ahead of World Sickle Cell Day, the Director General of Health Services, Dr Charles Olaro, said improving survival rates among children living with the disease is critical to reducing the country’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 of 15 percent,” Dr Olaro said at the Ministry of Health headquarters in Kampala.

He noted that an estimated six to seven million Ugandans carry the sickle cell trait, increasing the likelihood of the disease being passed on to newborns.

“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 remains among the countries with the highest burden of sickle cell disease globally, largely due to the widespread prevalence of the sickle cell gene within the population.

According to Ministry of Health estimates, about 13 percent of Ugandans carry the sickle cell trait, with prevalence reaching as high as 20 percent in some parts of northern and eastern Uganda.

Dr Sarah Kiguli, a paediatrician at Mulago National Referral Hospital, said the disease is now present across the country, although certain regions continue to record higher prevalence rates.

“The high-burden regions include Acholi, Lango, Central Uganda and South-Western Uganda,” she said.

To curb new cases, the Ministry of Health has intensified newborn screening programmes and promoted premarital testing to help couples understand their genetic status before starting families.

Dr Mariam Ajambo, the National Coordinator for Sickle Cell Disease at the Ministry of Health, said awareness of one’s sickle cell status is essential 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 Challenges Persist

Despite ongoing interventions, health officials say access to essential medicines remains a major challenge in the management of sickle cell disease.

Dr Olaro urged health facilities 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, leading to severe pain episodes, anaemia, organ damage and other serious health complications.

Health experts maintain that early diagnosis, access to treatment and increased public awareness remain key to reducing deaths and improving the quality of life of people living with the disease.

Data from the 2024 national sickle cell disease survey shows significant regional variations in prevalence. East-Central Uganda, including Busoga, Bugweri, Bukedi and parts of Teso, recorded a prevalence of 1.5 percent, followed by the Mid-North regions of Acholi and Lango at 1.3 percent.

Mid-Eastern Uganda recorded 1.2 percent, North-Eastern Uganda 1 percent, Central Uganda 0.8 percent and Kampala 0.7 percent. Mid-Western and West Nile regions each recorded 0.5 percent, while South-Western Uganda registered the lowest prevalence at 0.2 percent.

According to the 2024 Annual Health Performance Report, sickle cell disease ranks as the 12th leading cause of hospital admissions in Uganda, accounting for 1.5 percent of all admissions in health facilities nationwide.