Uganda loses 9,000 children to sickle cell disease every year – report

Uganda continues to bear one of the world’s highest sickle cell disease burdens, with health experts warning that thousands of children are still dying from preventable complications despite years of awareness campaigns and expanded screening efforts.

The warning was made during the commemoration of World Sickle Cell Day at Mulago National Referral Hospital on Friday, where doctors, patients, caregivers and development partners gathered to highlight the need for early screening, improved awareness and timely access to care.

According to the Ministry of Health, about 13 per cent of Ugandans carry the sickle cell trait, with prevalence rising to nearly 20 per cent in some parts of northern and eastern Uganda.

Health officials estimate that about 20,000 babies are born with sickle cell disease every year, while between 6,000 and 9,000 die before reaching their fifth birthday.

Dr Phillip Kasirye, a paediatric haematologist and head of the Sickle Cell Clinic at Mulago National Referral Hospital, said many families continue to discover the condition only after a child has been diagnosed, yet early testing can help people understand their risk before starting families.

“Early screening for sickle cell disease is very important because it helps individuals and couples know their status before making major life decisions such as marriage and childbirth. Many families only discover the condition after a child is born, yet this can often be prevented through simple testing,” Dr Kasirye said.

He noted that although awareness about sickle cell disease has improved over the years, many Ugandans still do not know their sickle cell status.

“We also need to address the fear and stigma around sickle cell disease. It is a genetic condition, not a curse or a contagious illness, and patients deserve understanding, support and timely care,” he added.

The disease is inherited when a child receives a sickle cell gene from both parents.

While individuals who carry only one copy of the gene are generally healthy, they can pass it on to their children. Medical experts say when two carriers have children together, there is a significant chance of having a child born with sickle cell disease.

Health workers are increasingly encouraging Ugandans to view sickle cell screening in the same way they view HIV testing, as an important step in making informed health and family planning decisions.

The burden of the disease remains visible every day at Mulago National Referral Hospital, which hosts what is regarded as Africa’s largest specialised sickle cell clinic.

More than 200 patients seek treatment at the facility daily, ranging from newborn babies to adults who have lived with the condition for decades.

The clinic provides specialised treatment, counselling, laboratory services and long-term follow-up care.

For many patients, it serves as a critical lifeline in managing painful crises, severe anaemia and other complications associated with the disease.

A 2016 study published in The Lancet Global Health ranked Uganda third in Africa and tenth globally in terms of sickle cell disease burden.

The study linked many child deaths to preventable complications such as severe infections and anaemia, underscoring the importance of early diagnosis and continuous care.

The Ministry of Health estimates that nearly six million Ugandans carry the sickle cell gene, a figure that health experts say demonstrates the need for sustained public education and wider access to screening services.

Beyond the medical discussions, this year’s World Sickle Cell Day commemoration also highlighted the role of partnerships in supporting patient care.

Through its “Hope in Motion” campaign, dfcu Bank supported the renovation of patient facilities at the Mulago Sickle Cell Clinic, including improvements to sanitation facilities and waiting areas used by patients and caregivers.

Speaking at the handover ceremony, Charles Mudiwa, dfcu Bank CEO, reaffirmed the bank’s belief that the health of a nation and the success of its businesses are fundamentally interconnected.
“We believe the health of a nation and the success of its businesses are inseparable. Our journey in sickle cell advocacy began with our employees and has grown into a nationwide commitment to awareness, support and better care. We now want to move beyond conversations to lasting solutions, including strengthening healthcare infrastructure for people living with sickle cell disease,” he said.