« On Tuesday 26 March 2019, at the initiative of the Pierre Fabre Foundation, the first working meeting entitled “Initiative Drépanocytose Afrique” (IDA) was held in Paris, in the presence of political, medical and scientific representatives from eleven African countries: Burkina Faso, Burundi, Cameroon, Central African Republic, Kenya, Madagascar, Mali, Nigeria, Democratic Republic of Congo, Senegal and Togo. The French Ministry of Europe and Foreign Affairs was also represented.
The first genetic disease in the world that affects the vast majority of countries in sub-Saharan Africa, Sickle Cell Disease was recognized by the United Nations as a public health priority in 2008. However, the lack of dedicated funding has not made it possible to meet the basic needs of the population affected by this pathology.
After having discussed the main advances and difficulties encountered in the fight against sickle-cell disease country by country, the participants would like to call on the international community to address the following emergencies:
– Promoting the fight against sickle cell disease and placing its financing on the global health agenda.
– Need to institutionalize systematic neonatal or early screening in national health frameworks and systems.
– Integration of screening and management of sickle cell disease at all levels of the health pyramid.
– Launch of a “Medicines Initiative” to develop equitable access to essential medicines for the prevention and management of complications.
– Capacity building of health professionals in diagnosis, medical care and psycho-social support.
– Coordination of policies and strategic plans to combat sickle cell disease, at National, pan-African and international level.
Through this advocacy, the representatives of the eleven countries present and the Pierre Fabre Foundation alert the international representations in Global Health to the urgent need to act in favour of the millions of sickle cell patients and their families. »
Signatories of the declaration:
Dr Pierre SOMSE, Minister of Health and Population of Central Africa
Pr Isaac ADEWOLE, National Minister of Health of Nigeria
Dr Cleopa Kilonzo MAILU, EBS, EGH, Ambassador Permanent Representative of the Republic of Kenya to the United Nations Office at Geneva
Dr Thelma Lorna NGUILELO, Director of the Research and Management Centre for Sickle Cell Disease in Bangui, Central Africa
Mr. Christian Maucler PAMATIKA, Expert, Ministry of Health and Population of Central Africa
Dr Oyebanji Ololade FILANI, Senior Technical Advisor to the National Minister of Health of Nigeria
Pr Iheanyi OKPALA, Professor of Haematology, Nigeria
Ms. Hellen Mbugua-KABIRU, Health Advisor, Permanent Representation of the Republic of Kenya to the United Nations Office at Geneva
Pr Jessie N. GITHANGA, Associate Professor, University of Nairobi, Kenya
Dr Jamilla A RAJAB, Senior Lecturer, Haematology and Blood Transfusion Unit, Kenyatta National Hospital, Kenya
Dr Robert KARAMA, Secretary General of the Ministry of Health of Burkina Faso
Dr Estelle-Edith DABIRE/DEMBELE, MD/MPH, Director of the Directorate of Prevention and Control of Non communicable Diseases (DPCM) of the Ministry of Health of Burkina Faso
Pr Eléonore KAFANDO, Professor of Haematology, University of Ouagadougou, Burkina Faso
Dr Jeanine AYINKAMIYE, Deputy Director of the Non-Communicable Disease Control Programme at the Ministry of Health of Burundi
Dr Inés NSHIMIRIMANA, Focal Point for the fight against sickle cell disease within the National Integrated Programme for the Control of Chronic Non-Communicable Diseases in Burundi
Pr Hèzouwè MAGNANG, representative of the Minister of Health and Social Protection of Togo, Director of the National Sickle Cell Research and Care Centre
Dr Guillaume WAMBA, Paediatrician, President of the Cameroon Sickle Cell Disease Study Group (GEDREPACAM) Founding member of the Network for the Study of Sickle Cell Disease in Central Africa (REDAC)
Pr Aimée Olivat RAKOTO ALSON, Professor of Haematology, Head of the Reference Laboratory in Haematology of Madagascar
Pr Dapa DIALLO, Professor of Haematology, Director General of the Research and Control Centre for Sickle Cell Disease in Bamako, Mali
Pr Aldiouma GUINDO, Professor of Haematology, Deputy Director General, Bamako Sickle Cell Research and Control Centre, Mali
Pr Kodondi KULE-KOTO, Director General of the Institute of Health Sciences Research, President of the National Scientific Council, Democratic Republic of Congo
Dr Benoît MBIYA MUKINAYI, Paediatrician. Founder of the paediatric clinic in Mbujimayi, Democratic Republic of Congo
Dr Ange Christian NGONDE MAMBAKASA, Head of the Sickle Cell Disease Management Unit at the General Reference Hospital of Makala, Democratic Republic of Congo
Pr Sidy Mohamed SECK, Professor-researcher at the UFR of Health Sciences of Senegal
Pr Ibrahima DIAGNE, Paediatrician, Coordinator of the Centre Research and Ambulatory Management of Sickle Cell Disease in Senegal
Pr Marc GENTILINI, former President of the French Red Cross, Founding President of the Pan-African Health Organisation (OPALS). Member of the Scientific Committee of the Pierre Fabre Foundation.
Pr Robert GIROT, Head of the Haematology Laboratory TENON Hospital. President of the Sickle Cell Disease Clinical Research Network
Dr Claire RIEUX, humanitarian doctor, specialized in haematology,
Pr Gil TCHERNIA,Member of the Scientific Committee of the Pierre Fabre Foundation. Mr Jacques GODFRAIN, Director of the Pierre Fabre Foundation, Former Minister of Cooperation
Mrs Béatrice GARRETTE, Executive Director of the Pierre Fabre Foundation