Feasibility study for a sickle cell disease treatment programme

BACKGROUND

Sickle cell disease is less common in the Caribbean than in Africa. It is also more effectively managed there, particularly in the French overseas territories. Nevertheless, some inequalities remain, as some islands, such as Dominica and Haiti, face greater disadvantages than others. To compensate for this imbalance, Caribbean clinicians and researchers joined forces to create the Carest network in 2011.

Fondation Pierre Fabre wished to support this effort, especially in Haiti: the prevalence of sickle cell syndrome on the island was reported to be 0.7% of births, but there was no dedicated policy, no prophylaxis use, and no appropriate vaccination. The priority there was fighting AIDS, tuberculosis and malnutrition.

In cooperation with Carest, the Foundation unveiled its initial operation in 2014, studying the feasibility of a treatment and management programme for sickle cell disease in Haiti.This initially entailed remedying the island’s dearth of epidemiological data through a neonatal screening pilot project implemented in three local hospitals. For this plan, the Foundation financed health personnel training in sampling techniques (with analyses performed in Guadeloupe). The operation also included improving patient care by training paediatric nurses and clinicians, as well as drafting a standard protocol. Lastly, a number of tools were developed to inform patients, their families and the general public about the disease.

After an exploratory mission by Fondation Pierre Fabre, operations began the second half of 2014. The long-term objective is to sensitise governments to the benefits of a national programme combatting sickle cell disease, and having a viable and adaptable disease management model.