Ghana has been urged to establish a sustainable, nationally funded newborn screening programme for sickle cell disease (SCD), building on three decades of progress in early detection and treatment.

The call was made by Professor Isaac Odame, Haematology Section Head at the Hospital for Sick Children (SickKids) in Toronto, Canada, and Director of the Global Sickle Cell Disease Network, during the inaugural Prof. Ohene-Frempong Memorial Lecture at the Korle Bu Teaching Hospital (KBTH) on October 29.

The lecture, held in memory of the late Professor Kwaku Ohene-Frempong and his pioneering contribution to sickle cell disease care and research, highlighted Ghana’s achievements in screening and treating the condition since the first pilot newborn screening programme was conducted in Kumasi in 1995.

Prof. Odame said Ghana had repeatedly demonstrated the feasibility and benefits of early screening for sickle cell disease, but the initiatives had largely depended on external funding that was limited in duration.

He said the country must now move beyond donor-supported projects and commit to a universal screening programme financed and sustained through national resources.

According to him, screening infants for sickle cell disease could be incorporated into existing primary healthcare services, including immunisation and child welfare clinics, with the support of newer point-of-care screening technologies.

This, he said, would make early diagnosis more accessible and enable affected children to receive appropriate care before complications develop.

Early diagnosis key to improving survival

Prof. Odame explained that identifying children with sickle cell disease early would allow them to be linked promptly to interventions that could significantly improve their health and quality of life.

These include counselling for parents and caregivers, vaccination, penicillin prophylaxis to prevent serious bacterial infections, and hydroxyurea treatment to reduce complications associated with the disease.

He stressed the importance of ensuring that screening did not end with diagnosis but was linked to a reliable system of follow-up care and treatment.

Demonstration projects offer a pathway for national programme

Ghana is already implementing demonstration projects at the Princess Marie Louise Children’s Hospital (PML) and Maamobi General Hospital to identify infants with sickle cell disease and connect them to appropriate care.

The projects are providing practical models for integrating early infant screening into routine healthcare delivery and demonstrating how the approach could be expanded across the country’s health system.

Prof. Odame said Ghana had an opportunity to build on these initiatives and incorporate sustainable sickle cell disease screening and care into the government’s Free Primary Healthcare Initiative.

Such integration, he argued, would help move the country towards a nationally coordinated programme rather than relying on isolated projects whose continuation depends on external financial support.

Ghana must build on 30 years of progress

The call comes as Ghana marks three decades since the introduction of its first pilot newborn screening programme for sickle cell disease in Kumasi.

The next phase, Prof. Odame said, should focus on ensuring that every child born with the condition is identified early and connected to the care needed to live a healthy and productive life.

He cited an estimated 16,000 children born with sickle cell disease in Ghana each year, underscoring the scale of the need for a comprehensive national response.

He said translating the country’s experience and existing screening models into a sustainable, nationally integrated programme would represent an important step towards health sovereignty.

The proposal would require sustained government commitment, reliable financing and the integration of screening, diagnosis and treatment into routine primary healthcare services.

It would also help ensure that children born with sickle cell disease are not left undiagnosed or unable to access essential interventions because of where they live or the availability of donor-funded projects.