Each year, nearly 896,000 babies are born in Ghana,[1] and an estimated two percent (about 18,000) of these babies are born with sickle cell disease (SCD). [2] Early screening of newborns for sickle cell disease can ensure early identification of the disease and linkage to care; without proper diagnosis and treatment, 50-90 percent of newborns with sickle cell anaemia, the most severe form of sickle cell disease, risk dying before age five. [3] However, a recent study in Ghana noted that only 5.5 percent of children were screened in the newborn period – and most cases were diagnosed through emergency departments visits, during pain crises.[4]
“We’ve had too many emergencies amongst children that could have been avoided had they simply been screened earlier in life for the disease”.
Ahmed, Paediatric Nurse
Newborn screening for sickle cell disease in Ghana started in 1993 but was limited to two out of the 16 regions only – Greater Accra and Ashanti, meaning that many newborns were at risk of late diagnosis, especially in regions where sickle cell disease care facilities were few.
From 2021 until present, CHAI through a grant funded by the Bill & Melinda Gates Foundation, worked in partnership with the Ministry of Health, Ghana Health Service, Sickle Cell Foundation of Ghana, and the National Newborn Screening Laboratory at Noguchi Memorial Institute for Medical Research to ‘close the loop’ for sickle cell disease testing and treatment in Ghana. This initiative focused on closing gaps in the cascade of care for sickle cell disease, including developing a clear and centrally coordinated pathway to comprehensive newborn sickle cell disease diagnosis and treatment.
Expanded screening and healthcare capacity
Figure 1: Pre-existing regions with newborn screening services
Since the start of the project, more than 85 healthcare providers have been trained on screening newborns for sickle cell disease including the collection of dry blood spot samples, storage and packaging, interpreting results and linking diagnosed babies to care. These healthcare providers then cascaded the training to an additional 172 healthcare workers, allowing for rapid and sustainable program scale-up. Across Ghana, an additional 14 additional newborn screening sites were established in 10 regions, helping expand screening coverage for over estimated 10,000 newborns living within a 5km of facilities. This represents a dramatic increase in accessibility of newborn screening services across the country. With support from CHAI, over 24,000 infants have been screened, of which 397 were diagnosed sickle cell disease positive, and over 204 infants with sickle cell were linked to care.
Figure 2: Current regions with newborn screening services
“Today, we can confidently say that babies born here with sickle cell disease, have an equal chance at survival as those in Accra (the capital city) because there are no delays in initiating care”
Lisa, Midwife
Strengthening program monitoring and data systems
CHAI also supported the Ministry of Health, Ghana Health Service and other partners to initiate a systems strengthening approach to sickle cell disease. This included developing monitoring tools to track program performance by collecting data on the number of individuals screened, referred, and initiated on treatment, frequency of commodity inventory and stockouts, and gathering feedback on any challenges encountered during implementation. The Ghana Health Service also introduced data fields into existing child health and nutrition registers to enable the reporting of key screening indicators in the national health information system.
As the newborn screening program becomes a routine service within the health facilities, more infants will be diagnosed early for appropriate care and management.
A call to action
Increasing access to screening provides a lifesaving intervention for infants and children who would, otherwise remain undiagnosed until acute illness. But for a child newly diagnosed with sickle cell disease, screening is just a first step to a quality life. Effective referrals to treatment clinics, access to prophylactic medications, and affordable disease-modifying treatment, laboratory services for the management of sickle cell disease are all critical for ensuring that children with sickle cell disease are healthy and live a good, quality life.
With relatively limited financial investments, huge strides can be made in sickle cell screening and treatment – yet this field continues to have relatively few global donors. Through additional resource mobilization, Ghana, and other countries with high burdens of sickle cell disease will be able to scale up services and reduce suffering and deaths among people living with sickle cell disease.
For more information, please contact Leslie Emegbuonye at lemegbuonye@clintonhealthaccess.org and Maame Asamoa-Amoakohene at mamoakohene@clintonhealthaccess.org .
[1] Gavi the Vaccine Alliance, 2019 birth cohort estimate.
[2] Therrell Jr, Bradford L., et al. “Empowering newborn screening programs in African countries through establishment of an international collaborative effort.” Journal of community genetics 11.3 (2020): 253.
[3] World Health Organization. Be smart, Know about Sickle Cell Disease! 2018. https://www.afro.who.int/news/be-smart-know-about-sickle-cell-disease.
[4] Sims, A.M., Bonsu, K.O., Urbonya, R. et al. Diagnosis patterns of sickle cell disease in Ghana: a secondary analysis. BMC Public Health 21, 1719 (2021). https://doi.org/10.1186/s12889-021-11794-6
