By The Government of Uganda has launched a mandatory nationwide sickle cell disease screening programme for all newborn babies, marking a major policy shift aimed at reducing preventable child deaths and improving long-term health outcomes. The initiative, led by the Ministry of Health, positions Uganda among a growing number of African countries adopting universal newborn screening for sickle cell disease, a move health experts say could save thousands of lives annually through early diagnosis and timely care.
Sickle cell disease remains one of the country’s most serious but under-diagnosed childhood illnesses. Approximately 20,000 babies are born with the condition every year, and an estimated 6,000 to 9,000 of them die before reaching their fifth birthday. Most of these deaths are linked to complications such as severe infections and anemia that could be prevented with early medical intervention.
Speaking at the launch of the programme, the Ministry of Health Permanent Secretary, Dr Diana Atwine, said mandatory screening at birth would enable health workers to identify affected infants immediately and link them to appropriate care. She noted that delayed diagnosis has long been a major factor in sickle cell-related deaths, particularly in rural communities where symptoms are often mistaken for common childhood illnesses.
Early diagnosis allows children to access life-saving interventions including routine immunisation, preventive antibiotic treatment and disease-modifying therapy such as hydroxyurea. Medical experts say hydroxyurea increases fetal hemoglobin levels, reduces painful crises and lowers the need for frequent blood transfusions, significantly improving survival and quality of life.
To support the rollout, the National Medical Stores will begin supplying rapid diagnostic test kits to public health facilities from February 2026, allowing newborns to be screened free of charge in government hospitals and health centres across the country. Private health facilities have also been encouraged to offer screening services in order to expand access, particularly in urban areas where a large number of births occur outside the public health system.
Uganda continues to face a heavy sickle cell burden, with data from the 2014 National Sickle Cell Trait and Disease Survey showing that about 13 percent of the population carries the sickle cell gene, translating to an estimated six to seven million people. Prevalence varies significantly by region, with districts such as Alebtong, Namutumba, Bundibugyo and Buliisa recording some of the highest rates, while other areas show comparatively lower levels. Uganda ranks third in Africa in terms of sickle cell trait prevalence.
The 2024 Annual Health Performance Report indicates that sickle cell disease accounts for about 1.5 percent of hospital admissions nationwide and contributes to approximately 15 percent of under-five deaths recorded in health facilities. Over the past decade, laboratories tested more than 500,000 samples and identified 34,729 positive cases, reflecting a positivity rate of seven percent. Health officials believe the true burden is higher due to limited testing and frequent misdiagnosis.
Pediatric specialists have welcomed the mandatory screening policy as a critical step toward improving child survival. Dr Deogratious Munube, a pediatrician at Mulago National Referral Hospital, said many children with sickle cell disease repeatedly present with fever and pain that is often treated as malaria, delaying proper diagnosis. He noted that early identification through newborn screening allows doctors to follow children from infancy, prevent severe complications and reduce repeated hospital admissions.
Dr Munube also emphasized that sickle cell disease is inherited when a child receives two sickle cell genes, one from each parent. He encouraged couples, especially those with a family history of the trait, to seek genetic counseling before marriage or early in pregnancy to better understand their risk.
Health authorities say the new policy represents a shift toward preventive and long-term child healthcare. By identifying sickle cell disease at birth, the government aims to reduce avoidable deaths, lower the cost of repeated hospitalisation and improve the quality of life for affected children and their families. Officials caution that the success of the programme will depend on sustained funding, reliable supply of test kits and medicines, trained health workers and continued public awareness, particularly in high-prevalence communities.
For many families, the introduction of mandatory newborn screening offers renewed hope that sickle cell disease will no longer be diagnosed too late, and that children born with the condition will have a better chance to grow, attend school and live into adulthood.
