Uganda has rolled out mandatory nationwide screening of newborns for sickle cell disease, a move health officials say will significantly reduce the disease’s contribution to under-five deaths and ease pressure on the country’s health system.
Sickle cell disease (SCD) remains a major but under-recognized cause of child mortality in Uganda. Health ministry data show that about 20,000 babies are born with the condition each year, and an estimated 6,000 to 9,000 die before their fifth birthday, largely from preventable complications linked to late diagnosis.
“This intervention targets under-five mortality directly,” said Dr. Diana Atwine, permanent secretary at the Ministry of Health. “Children with sickle cell disease account for a large share of these deaths, sometimes exceeding those from HIV/AIDS, while requiring intensive care such as repeated blood transfusions that strain our limited resources.”
Under the new policy, all newborns will be screened before discharge from government health facilities using rapid diagnostic tests (RDTs) similar to those used for HIV. Results will be recorded immediately on child health cards, and children who test positive will be linked to care and followed up to manage complications such as severe infections and organ failure.
Atwine said laboratory capacity has been strengthened nationwide, and the National Medical Stores (NMS) will begin supplying sickle cell RDT kits to public facilities free of charge starting February 2026. Private health providers have also been encouraged to make testing widely accessible.
She added that hydroxyurea, a key disease-modifying drug for sickle cell disease previously scarce in Uganda, has now been added to the national essential medicines list, with efforts underway to ensure availability even at lower-level health facilities. The oral drug, recommended by the World Health Organization, reduces pain crises and the need for blood transfusions by increasing fetal hemoglobin.
“When we diagnose early, we can prevent complications and deaths through early vaccination, penicillin prophylaxis and disease-modifying therapy such as hydroxyurea,” Atwine said. “Mothers are also counseled to recognize danger signs early.”
Child health expert Dr. Deo Munube, a consultant pediatrician and pediatric hematologist-oncologist at Mulago National Referral Hospital, said delayed diagnosis has undermined gains made against other childhood killers such as pneumonia, diarrhea and malaria.
“Studies at Mulago found that 25 percent of babies presenting with fever and suspected malaria actually had undiagnosed sickle cell disease,” Munube said. “Without early screening, these children are treated repeatedly for infections while the underlying condition goes unnoticed.”
Uganda ranks third in Africa and fifth globally in sickle cell disease prevalence. About 13 percent of the population — roughly six to seven million people — carry the sickle cell trait, according to health authorities. The 2024 Annual Health Sector Performance Report ranks sickle cell disease as the 12th leading cause of hospital admissions, accounting for 1.5 percent, and attributes 15 percent of under-five deaths to the condition.
The 2014 National Sickle Cell Trait and Disease Survey shows wide regional variation. High-burden districts such as Alebtong, Namutumba, Bundibugyo and Buliisa recorded trait prevalence rates of up to 24 percent, while parts of southwestern Uganda reported rates below five percent. Disease prevalence was highest in East-Central Uganda at 1.5 percent, with Kampala recording 0.7 percent.
Munube said sickle cell disease is inherited and occurs when both parents carry the sickle cell trait. Each pregnancy between two carriers carries a 25 percent chance of producing a child with the disease.
“People with the trait are healthy and often unaware of their status,” he said. “That is why premarital testing and genetic counseling are important, but mandatory newborn screening ensures that affected children are identified and supported before symptoms appear.”
“Every child born with sickle cell disease in Uganda deserves to be diagnosed at birth and given a chance to live,” Munube added. “With the right policies, care practices and financing, Uganda can become a continental leader in newborn screening.”
