Creating and developing the Research Centre to combat sickle cell disease
— Mali —
With high prevalence in the country, ranging from 4% to 25% from north to south, sickle cell disease is a particularly formidable foe in Mali. In 2005, an estimated 5,000 to 6,000 newborns have sickle cell anaemia requiring structured medical oversight. Paradoxically, local health professionals know little about this disease, one generally diagnosed too late based on its serious complications.
Fondation Pierre Fabre, having learned more about the issue from Professor Gil Tchernia and having secured the support of Professor Dapa Diallo, then head of hepatology at the Point G Hospital, decided to create a Research Centre to combat sickle cell disease (CRLD) in Bamako. The centre’s mission would be to screen for the disease, receive and hospitalise patients, conduct training and information campaigns, but also to perform clinical research. In 2006, the Foundation began bringing together the public and private partners needed to create the centre. It funded equipment purchases, arranged training for healthcare personnel, etc. Four years later, the CRLD opened in January 2010.
For the Pierre Fabre Foundation, the adventure has continued by way of two agreements covering the periods 2010-2012 and 2013-2015. It would subsidise the CRLD’s development, including training for the medical staff of care centres in Mali and the sub-region. Since 2014, the Centre has been awarding a university-level “Sickle Cell Disease” degree, one created by a 2013 decree and that 17 doctors have already obtained.
Today serving patients residing in Bamako, as well as in other Mali regions or neighbouring countries such as Guinea and Mauritania, the Bamako CRLD plays a fundamental role in the regional fight against sickle cell disease. As such, it conducts research on subjects such as the morbidity and mortality of malaria in people with sickle cell disease, or the prevalence of HIV, HBV and HCV infections and anti-Rh and Kell allo-immunization in sickle cell patients.
Combating Sickle cell disease
Distributor and operator
- Creation of the public and private partner consortium and overall coordination
- Funding of CRLD equipment
- Instructional design
- Training funding
- Funding for CRLD decentralisation
The centre’s results have shown that the extent of the disease in our country has thus far been underestimated. Fortunately, the authorities and the general population are now genuinely committed to fighting sickle cell disease in Mali. The government has been financing 80% of the centre’s annual budget since its inception.”
Pr Dapa Diallo
Professor of Haematology and Director of the Research Centre to combat sickle cell disease in Bamako
ACHIEVEMENTS AND FUTURE INITIATIVES
patients followed by the CRLD by the close of 2014
new patients per month on average in 2014
consultations and 2,383 hospitalisations in 2014
screenings in 2014
Bamako towns targeted by screening campaigns in 2014
The first class of
doctors began the CRLD’s Sickle Cell advanced degree programme
As part of the CRLD decentralisation plans, Fondation Pierre Fabre financed a competence unit in the Kayes regional hospital, more than 600 kilometres away from Bamako, scheduled to be operational as of autumn 2015. Objective: facilitate treatment for the children and adults with sickle cell disease living in the area.
During creation of the project:
- Association malienne de lutte contre la drépanocytose – AMLUD (information campaign funding, fundraising)
- Conseil général des Hauts-de-Seine (funding for centre construction)
- Fondation Caisses d’Épargne pour la Solidarité (funding of training and information initiatives)
- Fondation pour l’Enfance (funding for staff)
- François Depresle (architectural design of the centre)
- Gil Tchernia (scientific expertise)
- Mali’s Government (land donation, provision of medical staff, generics supplies)
Since creation of the project:
- Coopération internationale de la Principauté de Monaco (screening and treatment funding)
- Ministère des Affaires étrangères (funding for an International Technical Expert position on temporary assignment to Prof. Diallo)
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.