Amplifying impact: NNHF partners from Democratic Republic of Congo secure additional grant on Sickle Cell Disease
The Novo Nordisk Haemophilia Foundation (NNHF) and its project partners in the Democratic Republic of Congo (DRC), leading the ‘Hemodrepa 2’ initiative, are thrilled to announce they have received a grant from the Bill & Melinda Gates Foundation (BMGF) entitled “Improving Sickle Cell Disease Care in DRC with Mobile Lab Screening“ for early sickle cell disease (SCD) diagnosis and patient follow-up in remote and rural areas of the DRC.
While the new funded project will focus exclusively on SCD screening, the ‘Hemodrepa 2’ project, approved by the NNHF Council in May 2024, will complement this effort by continuing the unified strategy addressing both haemophilia and SCD, which has been in place since 2021. The project aims to improve access to care for haemophilia and SCD communities through a multidisciplinary approach. This initiative seeks to enhance diagnosis, treatment, and advocacy efforts, ultimately improving the quality of life for affected individuals in Kinshasa, Mbuji Mayi, Kisangani, and Lubumbashi.
Continuing a joint approach to haemophilia and SCD care
The second project, currently being implemented by Professor Jean Lambert Gini Ehungu of Cliniques Universitaires de Kinshasa and Professor Léon Tshilolo, a paediatrician and Director of the Institut de Recherche Biomédicale 1-Health, a research center created in CEFA/Monkole in Kinshasa, builds on the lessons learned from the first initiative. It adopts a decentralised outreach strategy to effectively reach more patients, particularly those who face significant travel distances in a country as vast as the DRC, facilitating easier access to diagnosis and treatment.
This optimised model will be rolled out in the provinces of Kisangani and Lubumbashi, while also accelerating advocacy efforts to reduce the high out-of-pocket costs for haemophilia and SCD communities. Funding from the Gates Foundation will enable the acquisition of a mobile laboratory, equipped with an electrophoresis system, blood cell counter, and semi-automated biochemistry tools, to reach the most challenging areas. Prof Johnny Mahlangu, NNHF Council Member, and his team at Charlotte Maxeke Johannesburg Hospital will support the development and implementation of locally adapted SCD protocols and education programmes.
Bringing equitable access to diagnosis and care to all regions of the DRC
The partnership between NNHF and its project partners, with support from the Bill & Melinda Gates Foundation, marks a significant step forward in improving healthcare for hemophilia and SCD patients in the DRC. By leveraging an outreach strategy and enhancing diagnostic and treatment capabilities, these projects are poised to make a lasting impact on the quality of life for individuals living with these conditions. The commitment to ongoing advocacy and the introduction of innovative solutions like mobile laboratories underscore the collaborative effort to bring equitable access to haemophilia and sickle cell disease diagnosis and care to all regions of the DRC.
About the ‘Hemodrepa 1’ project
The first NNHF-supported project took place between 2021 and 2023, primarily focusing on fostering a joint approach to haemophilia and SCD. This project aimed to raise awareness and build knowledge about haemophilia and SCD among healthcare professionals and health authorities, enabling the decentralisation of haemophilia and SCD diagnosis to Mbuji Mayi in the Kasai Oriental province and the establishment of basic haemophilia care centres in Mbuji Mayi, Kisangani, and Lubumbashi.
