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Despite starting sickle cells disease (SCD) screening for newborn babies over 20 years ago, national newborn screening programme at hospitals has not occurred since its launch in 2010.

Newborn screening for sickle cells disease in Ghana started in selected health facilities in the Ashanti Region.

Only 500,000 babies screened in 22 years

So far, only 500,000 babies have already been screened, out of 884,000 annual births.

One in every 50 children born with Sickle Cell

In Ghana, one in every 50 children was born with SCD, and an estimated 50 to 90 per cent of them were likely to die before age five, if undiagnosed.

15,000 babies born with Sickle Cell annually

Current statistics show that the prevalence rate for Sickle Cell Disease in Ghana is about 25 per cent and an estimated two per cent of births, amounting to approximately 15,000 babies born with the disease annually.
Only 3% of babies born in 22 years screened for Sickle Cell

Professor Kwaku Ohene-Frimpong, the President of the Sickle Cell
Foundation of Ghana, said it was very worrying that it had taken Ghana 22 years to cover between two to three per cent of children with sickle cells disease.

Majority of Sickle Cell babies denied quality care

This means that a lot more were being denied of the quality care without screening because they had not been reached.

Deaths could be averted

He noted that many of these deaths could be averted through easily delivered interventions such as newborn screening, parental education and prevention of life-threatening infections with medication such as penicillin prophylaxis.

4,514 Newborn screened for Sickle Cell in Korle Bu

Prof Ohene-Frimpong, who was speaking at a dissemination meeting in Accra on Friday, on the pilot programme on newborn screening for the SCD at the KBTH, said the hospital has, as of July 2018, screened 4,514 newborns for Sickle Cell Disease (SCD) under the first phase of a pilot programme, launched in June 2017.

Of the number screened, 74 were found to be positive to SCD, and 55, representing 75% of those screened positive, have since been enrolled in a special newborn clinic within KBTH for the necessary care.

Over 100 nurses have also been trained and have acquired the competency to perform screening for SCD.

Professor Ohene-Frimpong, who was speaking at a dissemination meeting in KBTH, on the pilot programme on Newborn Screening for the SCD, said the initial phase was to screen at least 4,000 babies born at the hospital and ensure that all others identified with the disease were enrolled into the pediatric sickle cell clinic for systematic and comprehensive follow-up care.

The intervention, he said, had become very necessary owing to the number of babies born with SCD and its devastating socio-economic and health implications both to the individuals, their families and the nation at large.

New-born screening programmes, he said, was key in identifying babies with SCD as early as possible so they could receive treatment and have the best possible chance of avoiding major disease complications.

He said the second phase of the programme would consolidate the gains by targeting universal screening of all babies born in the KBTH and improving clinical infrastructure and staffing.

He thanked the management and staff of the KBTH for their support and immense contributions over the years towards the screening of babies, and also the partnerships of Pfizer, the Global Sickle Cell Disease Network, as well as the Noguchi Memorial Institute for Medical Research (NMIMR).

Prof Bamenla Goka, the Project Sponsor, KBTH, outlined some of the achievements so far, citing the institution of an oversight committee, the development of clinical guidelines for newborn SCD clinic, and ensuring that all babies were enrolled commenced on penicillin prophylaxis.

Dr Cathy Segbefia, the Medical Lead at the KBTH, said there had been an increase in knowledge and improved competences of both doctors, nurses and midwives in new-born screening, but called for expanded coverage aiming at 100 percent.

She appealed for improved funding and logistics, more trained personnel, accurate and sustained documentation, as well as the timely delivery of results by the NMIMR.

She also called for strengthened collaboration with all other institutions to ensure total access and coverage of all newborns.