Plea for the international community to take sickle cell disease into account

15/06/2022

JOINT STATEMENT

On Wednesday, June 15, 2022, at the initiative of the Pierre Fabre Foundation, the second working meeting entitled “Sickle Cell Disease Africa Initiative” (SCAI) was held in Paris in the presence of institutional, medical, scientific and civil society representatives from twelve African countries (Burkina Faso, Burundi, Cameroon, Central African Republic, Côte d’Ivoire, Ghana, Republic of Guinea, Mali, Democratic Republic of Congo, Senegal, Tanzania and Togo) and Haiti.

Sickle cell disease is the first genetic disease in the world that affects the majority of people in sub-Saharan Africa and was recognized by the United Nations as a public health problem in 2008. However, the lack of dedicated funding and the still timid commitment of public authorities and development partners have not made it possible to meet the basic needs of the population affected by this disease.

After exchanging on the main advances, difficulties encountered and perspectives in the fight against sickle cell disease country by country since the first IDA meeting in March 2019, the participants wish to renew the following recommendations messages to their respective states and to the international community:

  • Promote the fight against sickle cell disease and its inclusion as a public health priority on the global health agenda by focusing on the coordination of the various actors involved in the field (national, pan-African and international coordination of policies as well as strategic plans to fight sickle cell disease
  • Promote the emergence and implementation of national strategic plans to fight sickle cell disease in each country, integrating the following priorities:
    • Strengthen and systematize neonatal, early or targeted screening on a national scale
    • To continue the training of health professionals and associations fighting against the disease to generalize and decentralize diagnosis, medical care and psychosocial support for all patients
    • Update and carry out a reliable evaluation of the prevalence of the disease in each country
    • Support associations fighting against the disease in their development and their role in accompanying patients
  • Strengthen research by setting up systematic and computerized data collection systems.
  • Establish reliable and sufficient supply channels to allow equitable access to hydroxyurea and other essential medicines.
  • To promote a better knowledge of the disease by the general population through the mobilization of institutional actors and civil society.

Through this plea, the representatives of the thirteen countries present and the Pierre Fabre Foundation are alerting national and international representatives in global health to the urgent need to act in favor of the millions of sickle cell patients and their families.

SIGNATORIES

BABY Mounirou: Directeur Général du CRLD, Professeur d’hématologie – Mali

BALANDYA Emmanuel: Senior Lecturer, Department of Physiology – MUHAS, Director, Postgraduate Studies – MUHAS Principal Investigator, SPARCO – Tanzania

BANAON Dramane: Coordonnateur National du Comité d’Initiative contre la Drépanocytose au Burkina Faso

BELINGA Suzanne: Directrice Générale Adjointe, Centre Pasteur du Cameroun

DELY-ST VICTOR Nora: Coordinatrice du projet dépistage de l’anémie falciforme, Hôpital Saint Damien, Haïti

DIAGNE Ibrahima: Professeur titulaire de pédiatrie, Directeur du Centre de recherche et de prise en charge ambulatoire de la drépanocytose de St Louis du Sénégal

DIALLO Dapa: Professeur honoraire d’hématologie – Mali

DIOP Saliou: Professeur titulaire en hématologie clinique, Directeur du Centre National de Transfusion Sanguine du Sénégal

DRAME Mamady: Directeur du centre SOS Drépno Guinée de Conakry – Guinée

EPOSSE Charlotte: Médecin Pédiatre, Responsable du Centre de prise en charge de la drépanocytose de l’hôpital Laquintinie de Douala -Cameroun

GARRETTE Béatrice: Directrice Générale de la Fondation Pierre Fabre – France

GIRUKWISHAKA Jean Bosco: Secrétaire Exécutif de l’Office de la Première Dame au Burundi

GUINDO Aldiouma: Directeur Général Adjoint du Centre de Recherche et de Lutte contre la drépanocytose (CRLD) de Bamako – Mali

HAVYARIMANA Jean de Dieu: Médecin Directeur du Programme National de Lutte contre les maladies chroniques non transmissibles du Burundi

KITENGE Bobo: Coordinateur général, Centre de Formation et d’Appui Sanitaire (CEFA/Monkole) de Kinshasa – République Démocratique du Congo

KOFFI Gustave: Professeur d’hématologie, Société Ivoirienne d’Hématologie Immunologie Oncologie – Transfusion Sanguine de Côte d’Ivoire

LUKANU Philippe: Coordinateur Académique, Département de Medecine de Famille et soins de santé primaires, SANRU – République Démocratique du Congo

MAGNANG Hézouwé: Directeur du Centre National de Recherche et de Soins aux Drépanocytaires (CNRSD) de Lomé – Togo

MBIYA Benoit: Directeur Général, Clinique Pédiatrique de Mbujimayi – République Démocratique du Congo

NGUILELO Thelma Lorna: Directrice du Centre de Recherche et de Traitement de la Drépanocytose de Bangui – République centrafricaine

OPPONG Samuel: Lecturer, University of Ghana Medical School – Ghana

OUEDRAOGO Chantal: Point focal Drépanocytose à la Direction de la Prévention et du Contrôle des maladies non transmissibles au ministère de la Santé du Burkina Faso

PRZYBYLSKI Christophe: Directeur Scientifique Fondation Pierre Fabre – France

TSHILOLO Léon: Professeur de pédiatrie et d’hématologie, Directeur du Centre de Formation et d’appui sanitaire Monkolé – République Démocratique Congo

ZOURE Emmanuelle: Directrice, Direction de la prévention et du contrôle des maladies non transmissibles (DPCM)/ (DGSP) Ministère de la santé, Burkina Faso

Read the joint statement
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