African Sickle-Cell Initiative: Advocating for sickle-cell disease to be included in the global health agenda
26/03/2019
For more than a decade, the Fondation Pierre Fabre has been helping to implement public policies in the fight against sickle-cell disease.
Despite the efforts of health authorities on the African continent, this disease, which affects 50 million people and causes several hundred thousand deaths each year, remains a “neglected” malady.
Sickle-cell disease is the most common genetic disease on the planet. It affects the haemoglobin (which carries oxygen through the body) and takes the form of anaemia, susceptibility to infections, very painful seizures caused by poor blood circulation and insufficient tissue oxygenation (particularly in the bones) and vaso-occlusive crises leading to major complications such as stroke, acute chest syndrome and osteonecrosis.
Each year, an estimated 300,000 children are born with the disease, two-thirds of them in sub-Saharan Africa[1]. Without treatment, more than half of children with the disease die[2]. The number of sickle-cell patients will increase in both high- and low-income countries[3]. Fifty-seven percent of births of children with sickle-cell disease are in Nigeria, the Democratic Republic of Congo (DRC) and India[4].
Despite these alarming statistics, sickle-cell disease remains an invisible global health problem.
While funding for HIV/AIDS, malaria and tuberculosis totalled 30 billion USD in 2017[5], estimates indicate that only 20 million USD are spent annually on sickle-cell disease, a substantial portion of which is allocated to research.
By improving access to diagnosis and treatment by having the disease made part of global health programmes, the large-scale combat against sickle-cell disease would further attainment of the United Nations Sustainable Development Goal 3.2: “By 2030, end preventable deaths of newborns and children under 5 years of age, with all countries aiming to reduce neonatal mortality to at least as low as 12 per 1,000 live births and under-5 mortality to at least as low as 25 per 1,000 live births.”
To support the existing dynamics in countries affected by sickle-cell disease, the Fondation Pierre Fabre, a world leader in care of the disease in the Global South, hosted a meeting of unprecedented magnitude in Paris, entitled “Initiative Drépanocytose Afrique” (African Sickle-Cell disease Initiative), to discuss the countries’ policy directions and potential regional strategies.
This meeting brought together the Nigerian and Central African Ministers of Health, representatives of the Ministers of Health of Togo, Kenya, Burkina Faso and Burundi, WHO representatives and fourteen experts from eleven African and Indian Ocean countries.
After discussing the main advances and challenges encountered in the fight against sickle-cell disease, participants in the “Initiative Drépanocytose Afrique” meeting established an intervention strategy, prioritised objectives and adopted a joint declaration.
JOINT STATEMENT
« 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
[1] Modell B., Darlison M., Global epidemiology of haemoglobin disorder and derived service indicators. Bull WHO. 2008; 86(6):480
[2] Grosse SD, Am J Prev Med, 2014
[3] Piel et al, Plos Med, 2013; Weatherall DJ, blood, 2010
[4] Piel at al, Plos med, 2013
[5] OMS 2017.