Three decades after Ghana introduced newborn screening for Sickle Cell Disease (SCD), many babies, particularly those born in underserved regions, still lack access to screening at birth.
Sickle Cell Disease, a genetic blood disorder, affects an estimated 15,000 to 18,000 babies born in Ghana each year. Despite early efforts to address the condition, access to screening services remains uneven across the country.
Ms Dinah Dwuma-Badu, a Paediatric Haematology Nurse at the Korle-Bu Teaching Hospital, noted that although the introduction of newborn screening in 1995 was a significant milestone, the programme was yet to achieve nationwide coverage.
As a result, thousands of children remained at risk of late diagnosis, severe complications, and preventable deaths.
In an interview with the Ghana News Agency, she explained that where a child was born still largely determined whether they were diagnosed early.
The first screening programme began in Kumasi in 1995 through collaborations between local and international partners.
Initially, services were limited to babies born at the Komfo Anokye Teaching Hospital and a few selected facilities in the Ashanti Region.
For more than two decades, children born outside these areas had little or no opportunity to be screened at birth. Although screening expanded to Accra in 2017 through the Princess Marie Louise Children’s Hospital, access continues to be concentrated in a few urban centres.
“Most of the screening facilities are in Greater Accra. If a baby is born in parts of northern Ghana, access to diagnosis remains a challenge,” Ms Dwuma-Badu said.
She described the situation as a major health equity issue, stressing that no child should face disadvantages based on geographical location.
Ghana, she added, had one of the highest global burdens of SCD, with approximately two per cent of all babies born each year affected.
“The patients we see in hospitals are only the tip of the iceberg. Many children are never diagnosed, and some die before anyone even knows they had sickle cell disease,” she said.
Early diagnosis is critical, as children with SCD often appear healthy at birth but can develop life-threatening complications within the first few months of life.
Without timely diagnosis and treatment, many may not survive beyond their fifth birthday.
However, simple interventions such as routine health monitoring, vaccinations, penicillin prophylaxis, and parental education can significantly improve survival when introduced early.
Ms Dwuma-Badu also emphasised that newborn screening enabled healthcare providers to offer genetic counselling and educate families about the hereditary nature of the disease.
She noted that many misconceptions still existed, with some families unaware of how the condition was inherited or why a seemingly healthy baby required ongoing medical care.
She identified several key challenges affecting sickle cell care in Ghana, including shortages of trained healthcare professionals, inadequate diagnostic equipment, weak referral systems, and limited blood supplies.
Despite those challenges, she commended recent progress, including the expansion of screening services and the inclusion of hydroxyurea, a disease-modifying treatment, under the National Health Insurance Scheme (NHIS).
She stressed, however, that greater investment was needed to ensure that every newborn in Ghana, regardless of birthplace, had access to screening and comprehensive care.
“We have the evidence. We know that newborn screening saves lives. The next step is ensuring that every child born in Ghana can benefit from it,” she added.
GNA