Improving healthcare and social services for those with sickle cell disease

BACKGROUND

In central Africa and Madagascar, the prevalence of the sickle cell gene ranges from 10% to 30%. Up to 2% of infants are born with the most severe form of the disease, and, without early and appropriate treatment, half to three quarters of these die before reaching the age of five. National programmes are generally attempting to curb this phenomenon, but governments lack the needed resources. In 2014, to remedy this problem, the IECD, the AFD and Fondation Pierre Fabre decided to invest in a major project spread over four years. The objectives: reduce the mortality and morbidity related to sickle cell disease and improve patient quality of life.

This programme, implemented in 2014 in the Democratic Republic of Congo and Madagascar and in 2015 in Congo-Brazzaville and Cameroon, focuses first and foremost on improving screening of children. By training healthcare workers and establishing functional laboratories in referring healthcare centres, it will be possible to screen nearly 100,000 children. The programme will also improve medical care by training healthcare professionals and the parents of affected children, as well as purchasing vaccines and medicines. Communication and information dissemination will also be addressed: 160,000 women, students, teachers, and others will be educated on the importance of screening, as will associations working with street children.

In addition to financial support, the Pierre Fabre Foundation will help the project with its expertise in sickle cell disease and share wisdom gained from its experiences in Madagascar and in Kinshasa.

Ultimately, this programme is expected to produce lasting change in the population’s behaviour and empower local health structures. It should also encourage public authorities to make sickle cell disease a priority. This could be done, for example by including it in the basic healthcare package, or adding it to initial training curricula for healthcare professionals or to training for primary- and secondary-school teachers.