Health, religious, and cultural leaders in Lango Sub-region are set to meet next week to examine factors contributing to the high burden of sickle cell disease and develop measures to curb its spread.
The Lango Regional Sickle Cell Stakeholders Symposium, scheduled for October 2 at Gracious Palace Hotel in Lira City, will bring together health workers, cultural and religious leaders, political leaders and officials from the Ministry of Health.
Dr. Andrew Odur, a senior executive consultant at Lira Regional Referral Hospital, said the symposium would provide an opportunity for stakeholders to establish why sickle cell remains highly prevalent in the sub-region and agree on interventions that can be implemented by different sectors.
Dr. Odur said discussions would also focus on expanding access to HB-electrophoresis machines, which are used to establish a person’s sickle cell status. He said some facilities, including Alebtong Health Centre IV and Lira Regional Referral Hospital, already have the machines, but more facilities across Lango need the equipment to increase access to testing.
According to Dr. Odur, wider availability of the machines would enable more people to know their sickle cell status, while those diagnosed with the disease could be linked to healthcare services for treatment and follow-up.
The symposium is being organised amid concern over the high sickle cell burden in Lango. Available national data puts Uganda’s sickle cell trait prevalence at about 13.3%, while the Mid-Northern region, covering Lango and Acholi, has recorded a disease prevalence of about 1.3%.
Recent reporting from Lango has put the sub-region’s sickle cell trait burden at between 20 and 25%, with Alebtong reported to have particularly high levels. However, the figures should be distinguished from the proportion of people actually living with sickle cell disease.
Former Lango Diocese Bishop Emeritus John Charles Odur Kami called on communities and stakeholders to find practical ways of addressing the problem, including promoting awareness about sickle cell status before marriage.
Bishop Kami also raised concerns about marriages involving couples from closely related clans, urging communities to understand their clan histories, and take precautions where there may be a risk of inherited sickle cell disease.
The Awitong of Ober Clan, Geoffrey Etwop, echoed the call for greater awareness about clan origins and sickle cell status before marriage.
Etwop urged couples to undergo sickle cell testing alongside other health checks before marriage and cautioned communities against myths surrounding the disease. He said some people still resort to witch doctors because of misconceptions about sickle cell disease, calling for increased public education to change such beliefs.
Daniel Roy Odur, executive director of the Catherine Phil Sickle Cell Support Initiative, said preparations for the symposium are in high gear, with stakeholders expected to discuss possible factors behind the high prevalence in Lango. He said the organisers also want to examine whether fragmentation of clans in Lango could be contributing to patterns of marriage between people with shared ancestry.
Odur proposed that proof of sickle cell testing should become a requirement before marriage and called on Members of Parliament to prioritise funding for sickle cell prevention, diagnosis, and treatment.
The symposium will be followed on October 3 by the Uhuru Sickle Cell Run 2026, which is intended to raise funds for haemoglobin electrophoresis machines for Dokolo Health Centre IV in Dokolo District and Aduku Health Centre IV in Kwania District.
Uganda has, in recent years, strengthened its response to sickle cell disease, including national guidelines and expanded screening. The Ministry of Health has identified Lango and Acholi among regions requiring particular attention because of their high burden.