Feasibility study for a sickle cell disease treatment programme
— Haiti —
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.
Combating Sickle cell disease
Type of involvement
- Funding for tools and information sessions
- Funding for trainings
- Treatment protocol assessment
ACHIEVEMENTS AND FUTURE INITIATIVES
partner health facilities
dedicated space created to raise parental awareness, run by the AAFH (Haiti Sickle Cell Anaemia Association)
nurse trained in the Sickle Cell DU advanced degree at the Antilles-Guyana University
In 2015, Fondation Pierre Fabre has continued to support capacity building in healthcare staff at partner structures, as well as raising awareness about the need for neonatal screening.
- Réseau CAREST – Caribbean Network of Researchers on Sickle Cell Disease and Thalassemia (opérateur du projet)
- Association d’anémie falciforme d’Haïti – AAFH (information des patients et du grand public)
- Hôpital pédiatrique Saint-Damien (dépistage, soins)
In 2013, the University Gaston Berger began an operational study of neonatal screening and early treatment of sickle cell disease. The Foundation has joined forces with this effort.
Operational study on early detection and treatment of sickle cell disease
In 2014, Cameroon, Madagascar and the two Congo joined forces in a vast transnational program to effectively fight against sickle cell disease. The Foundation supports the project overseen by the IECD and financed by the AFD.
Improving healthcare and social services for those with sickle cell disease
Follow our actions
To mark its 20th anniversary, Fondation Pierre Fabre organised on Thursday 12 September 2019 a day of discussions and celebration attended by Jean-Yves Le Drian, Europe and Foreign Affairs Minister, and Dr Denis Mukwege, winner of the 2018 Nobel Peace Prize.