Support for the Sickle Cell Disease Control Centre
— Guinea —
Guinea is one of the countries most severely impacted by sickle cell disease, a very painful hereditary disease that can be fatal if not properly treated (see our section on programmes addressing sickle cell disease, the world’s leading genetic disease). According to statistics published in 2019 by the Donka University Teaching Hospital in Conakry, 20% of the Guinean population is believed to carry the disease. Patients faced with diagnostic challenges and limited access to essential medicines find themselves forced to seek care in other countries in the sub-region, such as Mali, Senegal and Côte d’Ivoire.
IMPROVING TECHNICAL AND HUMAN CAPACITIES
Since 2019, the Fondation Pierre Fabre has been supporting the Sickle Cell Disease Control Centre of the SOS Drépanocytaires Guinée non-profit organisation in Conakry. This medical NGO founded in 2008 offers treatment at moderate cost and holds awareness-raising campaigns, particularly to encourage screening young children, as early treatment helps slow the disease’s progress.
The Foundation’s support is focused on three objectives:
- Support for staff training and for treatment and transfusion activities (including training in pain management led by the NGO Douleurs sans Frontières);
- Creation of a medical analysis laboratory (the first medical analyses were performed in November 2020);
- Opening of a pharmacy centre (including recruitment of a qualified pharmacist).
Other support positions have been identified, including staff to computerise patient medical records.
INCREASE THE NUMBER OF BENEFICIARIES
Throughout 2019, the monthly number of sickle cell medical consultations increased from 334 consultations and 34 new patients in January to 518 consultations and 75 new patients in December.
In 2020, the challenging health and safety context caused various delays, as Guinea is among the African countries most affected by the Covid-19 pandemic. Nevertheless, patient care progressed, with nearly 2,000 consultations between May and September 2020.
Combating Sickle cell disease
Type of involvement
Funding for infrastructure and equipment upgrades (medical analysis laboratory, pharmacy centre) and training for the centre’s healthcare staff
ACHIEVEMENTS AND FUTURE INITIATIVES
consultations in 2020
hospitalisations in 2020
patients in the active queue
An economic model well-suited to the context
The Sickle Cell Disease Control Centre in Conakry is based on an economic model of self-sufficiency: medications are billed to patients at a price 15% lower than what is charged in private pharmacies and are delivered to the poorest patients free of charge. The resulting revenue makes it possible to pay staff at a level aligned with the country’s standards.
- SOS Drépanocytaires Guinée, a non-profit organisation founded in 2008 and approved by the Ministry of Health
- Sickle Cell Disease Control Centre in Conakry (work completed in 2018)
- The Douleurs sans Frontières NGO
Creating and developing the Research Centre to combat sickle cell disease
With leadership from Professor Dapa Diallo and strong support from the Foundation, the first Research Centre to combat Sickle Cell Disease opened in Bamako, Mali, in 2005.30/07/2018
Screening and management of sickle cell disease
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.30/07/2018
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.