Kenya is among the countries set to benefit from enhanced screening and care for sickle cell anaemia.

This follows the announcement of a partnership between Novo Nordisk and the American Society of Haematology (ASH) to support the Consortium on Newborn Screening in Africa (CONSA) Community Health Worker (CHW) initiative.

According to data from the Ministry of Health, approximately 14,000 children are born with sickle cell disease in Kenya each year.

The genetic condition is particularly common in the Western, Nyanza, and Coastal regions.

However, a majority of affected children—between 50 and 90 per cent—die in early childhood due to delayed diagnosis and lack of access to quality treatment.

The program aims to demonstrate how CHWs trained in sickle cell disease (SCD) diagnosis, education and care coordination can significantly improve patient well-being and reduce health inequity, by improving retention to care in remote areas and helping children with SCD lead longer, healthier lives.

The SCD disproportionately impacts sub-Saharan African populations, with more than 75 percent of global births of babies with SCD occurring in sub-Saharan Africa.

Since 2018, CONSA has successfully screened over 140,000 newborns in sub-Saharan Africa for sickle cell disease, but a significant drop-off in follow-up clinical care after initial diagnosis remains a core challenge.

Key barriers, it said, include a lack of understanding of the disease, stigma and the distance to SCD-equipped health facilities.

Through Novo Nordisk’s partnership with ASH, the CONSA CHW initiative will work with local and national governments across sub-Saharan Africa over three years, to increase follow-up care post- diagnosis, reduce serious complications through early intervention and address care inequity.

Novo Nordisk is additionally working in partnership with reach 52, a social enterprise with an extensive network of digital health workers and community agents operating in low-access regions.

The partnership aims to deliver SCD health awareness campaigns across three Kenyan counties, Siaya, Homabay, and Kisumu, to encourage residents to increase health-seeking behaviours and reduce stigma associated with the disease.

“Too many children and families in sub-Saharan Africa don’t have access to needed sickle cell disease care. This initiative provides the opportunity to expand ASH’s newborn screening efforts to improve consistent access to care, provide education, and help these families through trusted health care professionals,” said Dr Belinda Avalos, ASH President.

She added, “We’re glad to partner with Novo Nordisk, an organisation that has shown a commitment to prioritising sickle cell disease care in low-access communities.”  

The CONSA consortium currently  maintains 11 clinical catchment areas across Ghana, Kenya, Liberia, Nigeria, Tanzania, Uganda and Zambia.

Each area will initially work with five CHWs and receive two yearly grants to bolster essential activities.

In years two and three, Nurse Coordinator CHW summits will help to facilitate cross-country collaboration, idea sharing and the broader enhancement of SCD care across Africa.

“With a majority of the 515,000 babies born with sickle cell disease each year in sub-Saharan Africa, and a global shortage of primary care providers, supporting nurses and community health workers to bridge any care gaps is essential,” said Vinay Ransiwal, Novo Nordisk General Manager Middle Africa.

He added: “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, alongside our efforts to develop new innovative treatment solutions.”

Novo Nordisk’s partnerships with CONSA and reach52 are part of an ongoing commitment to working with the SCD community to build capacity and capabilities in SCD and improve access to comprehensive care, to ultimately achieve better short- and long-term patient health outcomes.