Dubbed: “Consortium on Newborn Screening in Africa (CONSA) Community Health Worker (CHW)”, it seeks to address one of the biggest challenges in the fight against SCD — patient drop-off in follow-up clinical care after initial diagnosis.

The three-year programme is the brainchild of global biopharmaceutical company, Novo Nordisk, in partnership with the American Society of Haematology (ASH), and will be rolled out in seven African countries: Ghana, Kenya, Liberia, Nigeria, Tanzania, Uganda and Zambia.

The initiative will also foster cross-country collaboration. In its second and third years, regional summits will be held for nurse coordinators and CHWs to exchange knowledge, share best practices, and build a strong continental network focused on SCD care improvement.

The sickle cell disease remains a significant public health concern in Ghana and across the region. More than 75 per cent of global births of babies with SCD occur in sub-Saharan Africa, with an estimated 515,000 babies born with the condition each year.

The disease, if not properly managed, can lead to serious complications including stroke, organ damage and early death.

The Ghana Health Service and the Ministry of Health are therefore expected to play critical roles in integrating the initiative into national child health strategies.

The ultimate goal is to ensure that every child born with SCD in Ghana and the participating countries receives timely care and support for a healthier future.

Under the new initiative, trained community health workers will be deployed across designated clinical areas to support families with education, care coordination and follow-up services.

It also said in Ghana, five CHWs would be stationed at each clinical catchment area, supported by two yearly grants to enable outreach, referrals and data reporting.

The President of ASH, Dr Belinda R. Avalos, described the collaboration with the biopharmaceutical company as a vital opportunity to strengthen the care continuum for children living with SCD in Africa.

“Too many children and families in sub-Saharan Africa don’t have access to the needed sickle cell disease care.

This initiative provides the opportunity to improve access, provide education and support these families through trusted health professionals,” she said. 

Novo Nordisk’s General Manager for Middle Africa, Vinay Ransiwal, said that although over 140,000 newborns have been screened for SCD through CONSA since 2018, many of the diagnosed children failed to receive consistent treatment and monitoring due to stigma, lack of awareness and limited access to SCD-equipped healthcare facilities.

He emphasised the company’s commitment to enhancing the role of nurses and CHWs to bridge care gaps.

“As part of our sustainable iCARE strategy, we are committed to working in close partnership with SCD communities to enhance capacity and improve access to comprehensive care,” he said.