World Sickle Cell Day: CAPSCI Demands Mandatory Testing, Dedicated National Budget to Fight Disease

By Frank Oyugi

KAMPALA — As Uganda prepares to join the rest of the world in commemorating World Sickle Cell Day on June 19, 2026, the Catherine Phil Sickle Cell Support Initiative (CAPSCI) has issued a powerful call to action. The advocacy group is demanding bolder government policies and increased financing to eliminate the devastating impact of sickle cell disease (SCD) across the country.

​In a press statement issued in Kampala on Thursday, June 18, 2026, CAPSCI Executive Director Daniel Roy Odur urged the Government, Parliament, development partners, and the private sector to move "beyond awareness" and commit to concrete, life-saving actions.

​Despite notable advancements in medical management and diagnostic technologies, sickle cell disease remains one of the most critical inherited blood disorders affecting thousands of Ugandan families. The burden of the disease continues to pose severe public health, social, and economic hurdles, making sustainable state intervention more urgent than ever.

​Tracking Progress and Gaps

​The initiative commended the country's recent strides in tackling the disease. Key milestones include the expansion of newborn screening services through the Consortium on Newborn Screening in Africa (CONSA) and the establishment of regional centers of excellence for sickle cell care. Uganda has also achieved improved laboratory capacity, innovative sample transportation via the Central Public Health Laboratories Hub Rider Network, and the local manufacturing of Hydroxyurea.

​However, CAPSCI pointed out that critical gaps still lock out vulnerable populations, particularly in rural and hard-to-reach communities.

​Thousands of Ugandans remain unaware of their sickle cell status, comprehensive care remains unevenly distributed, and many local health facilities lack the infrastructure, essential medicines, and trained personnel required for effective management. Furthermore, the high cost of treatment continues to cripple affected families financially.

​Push for Mandatory Screening and Funding

​To bridge these gaps, CAPSCI has put forward a set of urgent recommendations to the government and health stakeholders. Top among the demands is the establishment of policies enforcing mandatory sickle cell screening and status awareness. This strategy targets adolescents, young adults, couples planning marriage, pregnant mothers, and newborns to ensure early detection.

​The organization is also calling on the government to guarantee that Hydroxyurea—a critical drug for reducing complications, hospitalizations, and mortality—is made both affordable and consistently supplied across all regions of Uganda.

​Financing remains a major hurdle. Consequently, CAPSCI is appealing directly to the Government and Parliament to establish a dedicated budget line for sickle cell disease within the national health budget. Advocates argue that sustainable financing is critical to strengthening prevention, treatment, local research, and healthcare workforce development.

​The Call to Action

​Alongside funding, the group emphasizes the need for increased investment in clinical research, genomics, and implementation science to generate home-grown evidence that can better inform public policy.

​Finally, the initiative stresses the importance of strengthening community awareness programs. CAPSCI notes that empowering the public with accurate information about inheritance patterns and available services is the only way to ensure that no Ugandan is left behind due to a lack of information.

​Executive Director Daniel Roy Odur reaffirmed CAPSCI's commitment to working alongside health institutions and development partners, emphasizing that every individual affected by the disease deserves a chance to live a healthy, productive, and dignified life.

​Odur urged all stakeholders to use this year's international commemoration to transition from mere awareness into real, life-saving actions that will give every child born with sickle cell in Uganda the opportunity to thrive.