By Julius Mugaga Tukacungurwa, Umoja Standard.
Kampala, Uganda: Representing the Katikkiro of Buganda, Dr. Frank Ndugga, Head of Health for Kyadondo County and Chief Executive Officer of Peoples Medical Hospital, Gayaza, told delegates at the 5th Annual Uganda Sickle Cell Convention 2026 that addressing sickle cell disease “cannot be addressed by the health sector alone. It requires families, cultural institutions, government, health workers, schools, religious leaders, civil society, development partners, the private sector and communities to work together.” The convention convened under the theme “Building Sustainable Sickle Cell Support Systems in Uganda and Beyond Using a Multisectoral Approach.”
Grounding his remarks in global and national data, Dr. Ndugga noted that the World Health Organization classifies sickle cell disease as a major public health priority, with an estimated 7.7 million people living with the condition worldwide and about 500,000 infants born with SCD annually. “Nearly 80% of these births occur in sub-Saharan Africa,” he said. “Uganda is among the top countries carrying one of the highest sickle cell burdens in the world.”
National estimates place sickle cell trait prevalence at approximately 13% and disease prevalence at 0.73%. Each year, between 20,000 and 25,000 babies are born with SCD in Uganda. In the absence of early diagnosis and structured follow-up, “about 30% to 45% of these children may die before their fifth birthday.” He stressed: “These statistics are not just numbers. They represent children in pain, parents under financial and emotional pressure, health workers carrying heavy caseloads, and communities that need information, testing, counselling and support.”
Dr. Ndugga clarified the clinical basis of the disorder, describing SCD as “an inherited blood disorder passed from parents to children. It affects the red blood cells, causing them to become hard, sticky and shaped like a sickle instead of being round and flexible. These abnormal cells can block blood flow, leading to severe pain, anaemia, infections, organ complications, repeated hospital visits and, in some cases, early death. This is why early testing, counselling, newborn screening, regular follow-up and timely treatment are very important.”
He commended Raising Hope International Friends for screening “over 15,000 individuals for sickle cell disease through collaborative community efforts,” describing it as evidence that “when medical expertise is combined with cultural and community mobilisation, lives can be saved.” He cited the Buganda Kingdom’s health advocacy through the Kabaka Birthday Runs of 2017, 2018 and 2019, which were dedicated to sickle cell awareness and raised more than UGX 200 million.
The funds, remitted to the Ministry of Health via the Central Public Health Laboratories, supported procurement and distribution of over 80,000 screening kits nationwide. “This was a practical example of how cultural mobilisation can translate into direct public health action,” Dr. Ndugga said. He added that the Kingdom’s media platforms, including BBS Telefayina and CBS, and its administrative hierarchy of chiefs “helped carry accurate information closer to households, encourage testing, reduce stigma, and strengthen community participation.”
Speaking from clinical experience, Dr. Ndugga observed that for affected families, SCD “is not just a medical diagnosis; it is an economic, emotional and social burden on entire households.” He identified persistent gaps in access to essential medicines such as hydroxyurea and folic acid, routine laboratory monitoring, blood transfusion services, and emergency crisis care. He also confronted stigma: “Sickle cell disease is not a curse, and it is not witchcraft. It is an inherited genetic condition that can be understood, tested for, planned for and managed.”
On behalf of the Katikkiro, Dr. Ndugga issued three priority actions: integrate genotype testing into standard pre-marital preparation, decentralize specialized SCD services to Health Centre III level and below to reduce travel burdens for rural families, and mobilize investment in subsidized medication, reliable blood donation systems, health worker training, and comprehensive psychosocial support for caregivers.
“The Buganda Kingdom remains an unwavering ally in this fight,” he affirmed. “Let us work together to ensure that every child born with sickle cell disease in Uganda does not merely survive, but thrives and achieves their full potential.” He recognized His Majesty Ssaabasajja Kabaka Ronald Muwenda Mutebi II for his sustained leadership in advancing the sickle cell response.
