The Ministry of Health has revealed that approximately 20,000 babies are born with sickle cell disease in Uganda every year, and about 9,000 of them die before reaching the age of five.
In response to the alarming mortality rate, the ministry has launched a nationwide programme to screen newborn babies for sickle cell disease.
Officials say the initiative is intended to fast-track early diagnosis and ensure timely access to medical care for affected children.
The Permanent Secretary at the Ministry of Health, Dr Diana Atwine, said early detection is critical in improving survival rates and reducing complications associated with the genetic blood disorder.
“This programme is aimed at reducing the number of children who die from sickle cell disease every year, especially those below the age of five,” Dr Atwine said during the launch.
Sickle cell disease is an inherited blood disorder that affects the shape and function of red blood cells, leading to severe pain episodes, recurrent infections, anaemia and other life-threatening complications.
Symptoms in children typically begin to appear between three and six months after birth.
For many families, the diagnosis comes with emotional and financial strain.
Forty-year-old Hope Fortunate Achiro says she will never forget the years 2024 and 2025, when she lost her two daughters to the disease.
Achiro recounted the anguish she endured after doctors informed her that both children had tested positive for sickle cell disease.
She said the family spent up to Shs10 million every month on treatment as they tried to manage recurring complications.
In search of specialised care, Achiro travelled to India, where she spent nearly Shs1 billion on treatment. Despite the financial sacrifice, her daughters did not survive.
“I did everything I could to save them,” she said during the launch of the newborn screening programme at the Ministry of Health headquarters.
Health officials say stories like Achiro’s reflect the urgent need for early diagnosis, preventive care and improved access to treatment.
While Uganda has made progress in raising awareness about sickle cell disease, challenges remain, particularly in the availability of specialised medical supplies and comprehensive care in many parts of the country.
Dr Atwine acknowledged that the country continues to grapple with gaps in medical supplies and specialised services.
She emphasised that prevention and early intervention remain critical because once severe complications set in, recovery becomes significantly more difficult.
According to ministry data, the 20,000 annual births of children with sickle cell disease place Uganda among the countries with the highest burden globally.
Health experts argue that newborn screening can significantly reduce mortality by enabling early initiation of antibiotics, vaccinations, routine monitoring and parental education.
The ministry says the new programme will be rolled out in phases, beginning with selected health facilities, with plans to scale up nationwide coverage.
As Uganda intensifies efforts to reduce child mortality, health authorities are urging parents to embrace screening and seek immediate medical attention for infants diagnosed with the condition.
