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,” says Prof Gini, who also underlines the need to intensify efforts to raise awareness and facilitate access to care for both diseases.

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.

Madiya Ntumba Jacquie, 12 years old, living with sickle cell disease, receives treatment for hyperhaemolysis syndrome, at the newly established ‘Hemodrepa’ centre. ©Justin Makangara/Novo Nordisk Haemophilia Foundation/Fairpicture

“This particular project has allowed us to focus our efforts on two neglected diseases that share some similar traits, and where ignorance leads to stigmatisation and even mystification,” says Prof Tshilolo. “Since we implemented the ‘Hemodrepa’ project at Bonzola Hospital, for the first time we have been able to make early diagnosis of sickle cell disease in new-borns and to identify people with haemophilia who were bleeding and sometimes dying without a diagnosis. It’s a first for the region of Oriental Kasai, but also in the wider Kasai region.”

The NNHF would like to congratulate the team and partners in the DRC on their achievements over the two-year project. Thanks to ‘Hemodrepa’, healthcare professionals have been trained and the team have been able to build partnerships with local stakeholders who join forces to build on the future of this project. With knowledge, diagnosis and care reaching further into the rural villages, the decentralisation project creates a solution that can be expanded to other regions.

The project team which has been working to successfully implemented the first project supported by NNHF in Democratic Republic of Congo, together with the Chief Head of Medical Services at the MIBA Hospital in Mbuji-Mayi. ©Justin Makangara/Novo Nordisk Haemophilia Foundation/Fairpicture.