By Julius Mugaga Tukacungurwa, Umoja Standard.
Kampala: Uganda is shifting its approach to sickle cell disease (SCD) from emergency treatment to a lifelong, integrated care model. Speaking at the 5th Annual Uganda Sickle Cell Convention 2026, Prof. Sarah Kiguli, Chairperson of the National Sickle Cell Task Force, emphasized that medical treatment alone cannot address the social, economic, and psychological challenges faced by people living with SCD.
Presenting on “Building Sustainable Social Support Systems in Uganda and Beyond: A Multisectoral Approach,” Prof. Kiguli urged policymakers to move beyond reducing mortality and focus on ensuring healthy, productive, and dignified lives for patients throughout adulthood. Uganda’s sickle cell registry shows improved survival, with most patients aged 6–12 years, many living into adulthood, including individuals over 45 years and one convention participant aged 65.
She explained that SCD is an autosomal recessive genetic disorder inherited when both parents pass on the abnormal gene. Where both parents carry the sickle cell trait, each pregnancy has a 25% chance of producing a child with SCD, a 50% chance of producing a carrier, and a 25% chance of producing a child without the gene.
Using the story of “Amina,” Prof. Kiguli illustrated that successful care depends on coordinated support from families, schools, communities, and social institutions, not healthcare alone. She noted that people living with SCD frequently face recurrent illness, interrupted education, employment discrimination, stigma, financial hardship, and additional vulnerabilities for women and girls.
She defined a sustainable support system as an integrated network of policies, services, partnerships, resources, and communities that continuously prevents, detects, treats, and supports people with SCD throughout life. Such systems should be locally owned, resilient, and integrated into maternal and child health, laboratory, and adult healthcare services, drawing lessons from Uganda’s successful integration of HIV services.
Prof. Kiguli presented a seven-pillar framework for strengthening Uganda’s response: leadership and governance; comprehensive healthcare with reliable diagnostics, uninterrupted hydroxyurea supply, and effective referral systems; research and innovation; community and patient empowerment; education and social support to reduce stigma and improve inclusion; sustainable financing through government investment, insurance, and private-sector partnerships; and robust data systems, including a national sickle cell registry.
She stressed that reducing the burden of SCD requires coordinated action by government ministries, academia, civil society, faith and cultural institutions, the media, and the private sector. The health sector should lead service delivery, education should promote awareness and support learners, finance should ensure predictable domestic funding, researchers should generate evidence, the media should increase awareness, civil society should advocate for patients’ rights, cultural and religious leaders should mobilize communities, and the private sector should drive innovation and investment.
On prevention, she advocated nationwide newborn screening alongside expanded premarital, adolescent, and school-based screening, supported by genetic counselling to enable informed reproductive decisions.
Prof. Kiguli highlighted Uganda’s achievements, including establishing one of Africa’s earliest specialised sickle cell clinics, introducing penicillin and malaria prophylaxis programmes, expanding services to 11 hospital-based treatment centres, supporting local diagnostic kit production, and adding hydroxyurea to the national essential medicines list.
Despite this progress, she challenged stakeholders to ensure these gains improve patients’ daily lives, emphasizing that no single sector can defeat sickle cell disease alone. Convention participants echoed the call for stronger partnerships, increased domestic investment, community ownership, and evidence-driven policies to advance Uganda’s next phase of SCD prevention, treatment, and lifelong care.
