Lira, Uganda | Health experts in Lango have attributed the rising burden of sickle cell disease in the subregion to increasing intermarriages among people of the same clan lineage.
Speaking during a training of Community Health Extension Workers (CHEWs) at Lira Regional Referral Hospital on Friday, April 10, 2026, the hospital director, Dr. Andrew Odur said persistent clan divisions are indirectly encouraging unions within closely related groups, heightening the risk of passing on the sickle cell trait.
Odur warned that reversing the trend will take time, noting that if the situation persists, communities may be forced to seek marriage partners outside their traditional settings due to the growing prevalence of the disease.
The training was organised by Catherine Phil Sickle Cell Support Initiative (CAPSI) in partnership with the Consortium on Newborn Screening in Africa (CONSA) and the Ministry of Health, aimed at equipping CHEWs with skills to support early detection and community sensitisation.
Odur commended the organisers for the initiative but urged them to expand the programme to reach more health workers and communities to strengthen the fight against the disease.
Dr. Ronald Misinde, a public health consultant at the hospital, advised CHEWs to put into practice the knowledge acquired and intensify awareness campaigns to help communities understand the dangers and management of sickle cell disease.
The Executive Director of Catherine Phil Sickle Cell Support Initiative, Daniel Roy Odur, said the training aligns with the Ministry of Health’s strategy of scaling up newborn screening and strengthening community-based care.
He noted that each trained CHEW is expected to support at least five children in their respective communities through awareness, follow-up, and linkage to care.
One of the trainees, Meri Ronald from Ibangi Ward in Lira City, said the training had equipped them with skills to identify people living with the condition and link them to appropriate health facilities for support.
Uganda remains among the top five African countries with a high burden of sickle cell disease, with Alebtong District recording the highest prevalence nationally at 23.9%, according to the Ministry of Health.
Health officials estimate that between 20,000 and 25,000 children are born with sickle cell disease annually in Uganda, with up to 80% dying early due to limited access to care.
To address the challenge, the government in February 2026 rolled out a nationwide newborn screening programme to enable early diagnosis and treatment, while Parliament has called for increased funding towards management of the disease.
Globally, an estimated 515,000 babies are born with sickle cell disease each year, with over 75% of these cases occurring in Sub-Saharan Africa.
The region continues to bear the heaviest burden, where between 50% and 90% of affected children die before their fifth birthday due to limited access to early diagnosis and treatment.
Within Africa, countries such as Nigeria, the Democratic Republic of Congo and Tanzania lead in prevalence, while Uganda ranks fifth on the continent, underscoring the urgent need for expanded screening, improved care and sustained public health interventions.
