Embrace mandatory newborn screening for sickle cell disease in Uganda

For decades, sickle cell disease has remained one of the most pressing, yet under-recognised public health challenges in our country. Uganda bears one of the highest burdens of sickle cell disease in Africa, with thousands of children born with the condition each year. In the past, up to 80% of children born with sickle cell disease did not live beyond the age of five, largely due to delayed diagnosis, limited access to treatment, and low awareness. The introduction of mandatory newborn screening is, therefore, a transformative intervention that will change the trajectory of countless lives.

This milestone has not been achieved in isolation. It is the result of sustained leadership, collaboration and resilience within our national health system, even amidst significant resource constraints. The Ministry of Health, working closely with partners and technical institutions, has demonstrated exceptional commitment by prioritising early diagnosis and integrating sickle cell care into national health frameworks. The establishment of updated national guidelines in 2025, alongside the national sickle cell registry and the sickle cell health passport, has brought much-needed standardisation of care and improved patient tracking across the country.

Equally commendable is the establishment of over ten regional centres of excellence for sickle cell care across Uganda. This decentralisation of services marks a significant departure from the previous over-reliance on central referral hospitals and ensures that children and families in high-burden regions, especially in northern and east-central Uganda, can access specialised care closer to home. Furthermore, the integration of Sickle Cell management into non-communicable disease (NCD) services is strengthening service delivery at regional and district health facilities, ensuring continuity of care for both children and adults.

With the introduction of the point-of-care Gazelle HB electrophoresis machine from Nicosam Health Care Uganda Limited and the Rapid Diagnostic device from Microhem Scientific across health facilities in Uganda, more people will get to know their sickle cell status in a timely manner.

Another remarkable advancement has been the strengthening of the national diagnostic system through the hub-rider sample transport mechanism. This strong and innovative system, where samples are collected from lower-level health facilities and transported efficiently to Kampala and regional referral laboratories for confirmatory testing, has significantly improved diagnostic turnaround time. It is a model of efficiency that reflects Uganda’s ingenuity in maximising limited resources to deliver life-saving services.

We also acknowledge the increased availability of hydroxyurea through public health facilities, a development that has drastically reduced painful crises, hospital admissions and complications among patients. Coupled with growing awareness and advocacy from civil society organisations and foundations across the country, Uganda is witnessing a cultural shift toward early testing, informed decision-making and improved community understanding of sickle cell disease.

As a country, we must proudly recognise that we have done extremely well in combating sickle cell disease, despite the resource constraints that continue to hamper interventions. However, we must also remain honest about the challenges that persist. The high disease burden continues to overwhelm the limited number of trained hematologists and specialised clinics, particularly in rural areas. Access to safe and adequate blood transfusion remains a critical concern, with nearly 30% of the national blood supply being utilised by sickle cell patients, yet shortages still affect timely treatment for severe anaemia and stroke prevention.

Additionally, the cost of comprehensive care remains high for many families, often consuming 20%–30% of household income, especially in rural communities. Cultural beliefs, stigma and misconceptions that associate sickle cell disease with curses or witchcraft continue to hinder early diagnosis and proper care. We are also witnessing a growing transition gap, where children who now survive into adolescence and adulthood struggle to access specialised adult sickle cell services.

It is, therefore, imperative for all stakeholders, health workers, parents, policymakers, cultural leaders and civil society to fully embrace the new mandatory newborn screening programme. Early diagnosis is the cornerstone of effective care and management. When sickle cell disease is identified at birth, children can immediately receive preventive care, parental education, prophylactic treatment, and regular follow-up, significantly reducing complications and mortality.

More importantly, early intervention improves the quality of life, productivity, and survival of people living with sickle cell disease. Mandatory newborn screening is not just a medical intervention; it is a national investment in the future of Uganda. It means fewer childhood deaths, reduced hospitalisations, lower long-term healthcare costs and stronger, healthier communities. It also offers hope to families that have long suffered in silence due to late diagnosis and lack of access to care.

Uganda has demonstrated that progress is possible even in the face of limited resources. The launch of mandatory newborn screening is a testament to our collective resilience, innovation, and compassion.

Let us now build on this momentum and ensure that no child born with sickle cell disease is left undiagnosed, untreated, or unsupported.

Together, we can transform sickle cell disease from a silent childhood killer into a manageable condition and secure a healthier future for the next generation of Ugandans.

The writer is the executive director, Catherine Sickle Cell Support Initiative.