Gov't launches nationwide child-centric sickle cell disease program to curb infant mortality

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Gov't launches nationwide child-centric sickle cell disease program to curb infant mortality
Ministry of Health, Dr Diana Atwine together with funders at the launch of the sickle cell disease care project in Kayunga.

The Ministry of Health, in partnership with key stakeholders, has launched a comprehensive program to address the urgent issue of sickle cell disease (SCD) among children in Uganda.

The “Integrating and Scaling up Sickle Cell Disease Care in Primary Health Services” program, which aims to improve early detection and care for SCD, will kick off in Kayunga District and extend to various communities across Uganda.

This initiative focuses on integrating sickle cell screening, preventative vaccinations, and essential medication within Uganda's existing primary health systems.

Through this approach, it aims to reach children who have historically lacked access to proper SCD care, particularly those in non-urban areas.

The program will ensure that every infant in Uganda is screened for SCD and that affected children receive life-saving treatments, including penicillin to prevent infections and hydroxyurea, a drug proven to reduce the frequency of severe SCD complications.

SCD is a genetic blood disorder that leads to severe anemia, painful episodes, and increased risk of childhood death.

In Uganda, an estimated 20,000 children are born with SCD each year, contributing significantly to hospital admissions and child mortality rates.

Despite advancements in other parts of the world, where 90% of children with SCD live into adulthood, nearly half of Ugandan children with SCD die before their fifth birthday.

Dr. Henry Mwebesa, Director of Health Services at the Ministry of Health, emphasised the program’s aim to maximize existing child healthcare systems to deliver SCD care directly to communities.

“The enormity of the scourge of sickle cell disease in Uganda, and across Africa, requires public health approaches grounded in primary health systems,” he said.

“This program is integrating SCD care within existing structures to be cost-effective, sustainable, and accessible.”

The initiative draws on experience from successful HIV programs to create a model of care that reaches vulnerable children and builds on Uganda’s healthcare infrastructure.

Dr. Diana Atwine, Permanent Secretary of the Ministry of Health, described the program as a turning point for child healthcare in Uganda.

“Our shared vision is to end the unconscionable suffering and childhood deaths from sickle cell disease. Uganda is proud to be ground zero for a new day for these children and for the future of Africa.”

The program’s implementation will rely on a coalition of national and international health organizations, including Texas Children’s Global HOPE Program, Baylor College of Medicine Children’s Foundation-Uganda, Makerere University, and the Uganda Pediatric Association.

Dr. Joseph Lubega, Director of Texas Children’s Global HOPE Program, affirmed that the initiative marks the beginning of a broader goal to curb SCD suffering across Africa.

“These children and families cannot wait any longer,” he said, adding that partnerships across various levels will be key to success.

Catharine Grimes, President of the BMS Foundation, emphasised the importance of addressing the healthcare disparities facing families in rural Uganda.

“For Ugandans living outside of major urban centers, finding care is a significant challenge and sometimes not even possible. Our new initiative, in partnership with the Ugandan Ministry of Health, will integrate lifesaving early-stage interventions into primary care facilities in non-urban areas.”

This initiative aligns with Uganda’s strategic health goals to reduce SCD prevalence, promising a sustainable model of care for affected families nationwide.

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