PI-09: LESSONS LEARNED FROM ONE DECADE EXPERIENCE OF THE « CENTRE DE RECHERCHE ET DE LUTTE CONTRE LA DRÉPANOCYTOSE (CRLD) » IN BAMAKO, MALI.

Abstract

Purpose: In 2006, WHO declared sickle cell disease (SCD) as a global public health priority and recommended the development of Reference Centers in the sub-Saharan African region where the disease affects 1 to 2% of births. In Mali, the birth rate was estimated at 714,000 per year and the incidence of sickle cell anemia (homozygous SS + S/β-thalassemia + SC), at 0.8% of live births. To begin to adress the issue of reducing the burden of the SCD in Mali, a Sickle Cell Research and Control Center was established in Bamako in 2010. This presentation, reports the experience of the first decade of operation of this Center. Materials and methods: Through the circumstances of its creation, the principle of operation and the results acquired by the Center in ten years of functioning, we make an analysis on the possible future orientations to optimize the management of sickle cell disease in sub-Saharan Africa by the Reference Centers. Results: The « Centre de Recherche et de Lutte contre la Drépanocytose (CRLD) » was established as a result of coordinated efforts by the Government of Mali, SCD patients association, and a consortium of partners led by Pierre Fabre foundation. The assigned objectives were: to support access to quality care with equity, to develop medical research on sickle cell disease, to train medical personnel on sickle cell disease, to develop education, information and communication on the disease, to promote national and international collaboration (South-South, North-South). In order to ensure an equitable access to care, the center provides treatment with no consideration of the financial status of the family. Since March 2010, when the Center began its activities, 956 patients from the first year to 10745 sickle cell patients in 2019 have been recruited and are being provided with regular follow-up and access to treatment. Sickle cell mortality assessed in 2016 was estimated at 0.035 per 100 person-years (0.040 per 100 person-years before 5 years). In terms of research, 44 research protocol have been conducted and 26 scientific papers were published. Within the framework of an university degree, the Center has trained 126 physicians from 12 French-speaking countries in East and West Africa, Madagascar and Haiti. More than 300 communications relays were trained. Conclusion: If the growing increase in patients recruitment has shown the validity of the creation of the Center with satisfactory results in the support of specific care, the results of some of its asigned objectives have remained below expectations. We propose a new approach for the management of sickle cell disease in sub-Saharan Africa that follows a pyramid-schape of healthcare services. The authors do not declare any conflict of interest