Shining the light on shared impact for World Sickle Cell Day 2023

The NNHF salutes our project team’s achievements in decentralising haemophilia and sickle cell disease diagnosis in the Democratic Republic of the Congo (DRC) in partnership with the University Clinic of Kinshasa

On World Sickle Cell day we are pleased to celebrate the impact of the NNHF’s first supported project in the DRC. Early in 2021, the team began working towards the objective of decentralising haemophilia and sickle cell disease diagnosis. Due to the very low level of haemophilia awareness and knowledge in the regions outside Kinshasa, there was no referral system or haemophilia network in place. Patients mainly reached the Kinshasa University Clinic in case of bleeding, and only a handful of paediatric patients were able to obtain treatment on a regular basis.

The project led by Prof Jean Lambert Gini Ehungu and Prof Léon Tshilolo set out to increase awareness among the public and authorities about haemophilia, develop a network of healthcare professionals knowledgeable on haemophilia and sickle cell disease, and establish a centralised patient registry for both blood disorders.

Mr Muamba Nyanguila Jean, brings his daughter Kayiba Muamba, 3 years old, to be screened for sickle cell disease and haemophilia at the MIBA clinic in Mbuji-Mayi where Mr David Tula Mukosongolo, biologist and lab technician is responsible for diagnosis at the newly establish laboratory, equipped thanks to the support of the NNHF. © Justin Makangara/Novo Nordisk Haemophilia Foundation/Fairpicture

Thanks to this first project supported by the NNHF we have been able to extend haemophilia and sickle cell diagnosis beyond the capital city of Kinshasa. We have established care at Bonzola Hospital in Mbuji-Mayi and are now looking to replicate the same model in other regions.

At the start of the project in the DRC, the second-largest country in Central Africa, only 43 people were diagnosed with haemophilia compared to an expected disease prevalence of more than 10,000. For people living in Mbuji-Mayi, located over 1,300 kilometres from the capital, that meant travelling for more than 25 hours by bus – each way.

To date, 64 people with haemophilia have been diagnosed, and patients with either disease living in the East Kasai region can now receive care closer to home. Madiya Ntumba Jacquie, 12 years old and living with sickle cell disease, was hospitalised for several weeks to successfully treat hyperhaemolysis syndrome, a rare complication from blood transfusions, at the newly established ‘Hemodrepa’ centre. She now receives care in a room with eight beds allocated to haemophilia or sickle cell disease.