Screening of newborns for sickle cell disease debuts in Nigeria, six other African countries

The American Society of Hematology (ASH), in partnership with African-based haematologists and allied health professionals, has launched the Consortium on Newborn Screening in Africa (CONSA), an international network, to demonstrate the benefits of newborn screening and early interventions for children with Sickle Cell Disease (SCD) in sub-Saharan Africa.

The programme will involve clinical sites in Ghana, Kenya, Liberia, Nigeria, Tanzania, Uganda and Zambia, with screening for 10,000 to 16,000 newborns in each of these countries every year for the next five years and researching the long-term benefits of newborn diagnosis and early clinical interventions.

Coordinator, Non-communicable Disease Programme, WHO Regional Office for Africa, Dr Jean-Marie Dangou, at a virtual press conference to announce the launch of the programme said more than 300,000 babies are born with SCD every year in sub-Saharan Africa.

He said between 50per cent and 80 per cent of children with SCD in Africa do not live past the age of five due to low access to genetic counseling, early diagnosis of babies, comprehensive clinical care and early intervention programmes.

Dr Dangou stated that implementing newborn screening and early interventions for children with Sickle Cell Disease (SCD) newborn will increase chances of survival for babies born with this condition.

He added that WHO is looking forward to working with national leaders, civil society organisations, and international partners, including ASH CONSA, so this is scaled up and all children are reached with life-saving interventions.

President of the Sickle Cell Foundation of Ghana, Dr Kwaku Ohene-Frempong, stated that how the disease affects young children in Africa, including its complications and pain, has not been in the radial of public health, and as such, there is difficulty in convincing public health services and government to put resources in the most important life saving early interventions for SCD.

Ohene-Frempong, the national coordinator for Ghana, CONSA, said although newborn screening has commenced in Ghana, it is yet to achieve the level of attention that will make it possible for all children born in Ghana to be screened, even though that is government policy at the moment.

He said: “Saving the lives of children is a priority in all our countries. Newborn screening for SCD saves the lives of children even before the parents know they have SCD. And that is why we need to continue to promote newborn screening to our government leaders.

“An organisation like the American Society of Haematology has a voice that can be heard very loudly, compared to our voices within our own countries. And that’s why we appreciate the CONSA collaboration with the American Society of Hematology.”

Former ASH president and member of the ASH CONSA Steering Committee, Dr Alexis Thompson, said the partnership with sickle cell experts based in Africa and the public sector is to prioritise government capacity and funding to increase the number of infants being screened for sickle cell disease across the region.

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