Screening and management of sickle cell disease
— 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
screening in 2020
healthcare personnel trained
patients enrolled in the group
In 2021, the Foundation is studying the continuation of this project in order to strengthen and consolidate the actions implemented since 2018 and to support a structure that ensures the provision of quality healthcare to very deprived populations.
- 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)
- Hôpital universitaire de la Paix – HUP (dépistage, soins)
- Hôpital Université d’Etat d’Haïti – HUEH (dépistage, soins)
- Institut Necker Pédiatrie en Haïti Association – INPHA (expertise)
Support for the Sickle Cell Research and Treatment Centre (CRTD)
The Fondation Pierre Fabre has been supporting the Bangui Sickle Cell Research and Treatment Centre (CRTD) since 2019. The CRTD is the country’s only referral institution and receives financial support for training and purchasing medicines and equipment.19/10/2021
Supporting the fight against sickle cell disease in Sub-Saharan Africa
This multi-country project must address the major challenge of reducing morbidity and mortality linked to sickle cell disease by acting on several levels: Detect, treat, train, raise awareness and support public authorities30/03/2022
Follow our actions
Haemophilia and sickle cell disease: Increasing our impact together in Guinea
A new partnership agreement has been signed between the Novo Nordisk Haemophilia Foundation (NNHF) and the Fondation Pierre Fabre to jointly improve awareness, diagnosis, care, and advocacy for blood disorders in Guinea.