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Sickle Cell Disease Medical Care in Sub-Saharan Africa: The Need to Decentralize the Competencies

Author(s): Dominik Schmid1, Mohamed Cherif Rahimy1
Affiliation(s): 1Médecins du Monde Suisse
Name your project or intiative: Sickle Cell Disease medical care in Sub-Saharan Africa: the need to decentralize the competencies
1st country of focus: Benin
Relevant to the conference theme: Non-communicable chronic diseases
Summary: Sub-Saharan Africa is particularly concerned by Sickle Cell Disease (SCD) for which curative treatment doesn’t exist. This disease is responsible for a mortality rate higher than 20% for pregnant women and higher than 50% for children under 5 years old. These underestimated, unknown or even ignored risk factors for this disease are never issued in statistics. Nevertheless, in 2006 the WHO recognized it as a public health problem. The first Sickle Cell Disease research, screening and care Center has been created in 1993 in Benin. The founder and director, Pr. Cherif Rahimy, is a worldwide well known hematologist and SCD specialist. He has asked Médecins du Monde Suisse to create decentralized branches of the initial Center in the country.
What challenges does your project address and why is it of importance?: According to the WHO, Sickle Cell Disease is particularly prevalent amongst the populations coming from Sub-Saharan Africa, India, Saudi Arabia and Mediterranean countries. It seems that the geographic distribution of this disease could be explained by the fact that it provides a better level of resistance to malaria but this mapping is changing because of the migratory movements. Thus, Sickle Cell Disease is today the first genetic disease in France (Bardakdjian-Michau, 2008). Although it affects 4% of the population in Benin, Sickle Cell Disease is still not well known and perceived as something shameful that has to be hidden. The lack of diagnosis and awareness of the complication caused by this disease explains the delays in care resulting in permanent consequences and a reduced life expectancy, especially for children between 0-5 years old. This statement is overwhelming considering that with a minimum of medical follow-up, a significant portion of those children affected by the Sickle Cell Disease could have a normal life.
How have you addressed these challenges? Do you see a solution?: In 2000, a national program to fight Sickle Cell Disease started which was aimed to open many decentralized branches of the Sickle Cell Disease medical care center settled in Cotonou since 1993. The Médecins du Monde Suisse project is structured in two consecutive phases: the first phase is to create branches of Sickle Cell Disease care services according to the model of the Cotonou Center and under its supervision. Concretely, the aim is to establish those branches in Department Hospital Centres and to develop the means and competencies which are needed to give medical care to the population affected by Sickle Cell Disease. Thus, the first decentralized branch, opened in Abomey in November 2010, is now offering a neighborhood service to the populations living in the Borgou’s and Alibori’s areas. The medical care of the disease can be achieved through two simple and inexpensive methods which reduce morbidity and mortality. A systematic screening of all pregnant women and infants and a follow-up program completed that strengthens families’ awareness would help achieving these reductions. The second phase would undertake to communicate the existence of these branches to the peripheral hospitals and to the health workers so that the sick pregnant women or the affected infants would benefit of these services.
How do you know whether you have made a difference?: The Pr. Cherif Rahimy is the director of the research, screening and medical care Center of the Sickle Cell Disease in Cotonou. He is a specialist of this disease and the studies he has published show that appropriate medical care of the Sickle Cell Disease gives spectacular results. He has enabled a reduction of the maternal mortality from 27% to 10% and of the infant-juvenile mortality from 50% to 2% (Rahimy and all., Blood, 2003; Rahimy and all., Blood, 2009). His work underlines the importance of pre-emptive and neonatal screening actions in the Sickle Cell Disease medical care and in the improvement in the life quality ofthose affected. Moreover, the attendance statistics of the first branch show encouraging results and the current outreach campaign should lead to a progressive increase in the number of consultations. In ten months, the branch only registered one newborn death, which tends to indicate that the outreach activities developed by the medical staff have a positive impact on the reduction of the maternal and juvenile mortality rate.
Have you or the project mobilized others and if so, who, why and how?: The project in Benin was possible thanks to the occasional and regular cooperation of diverse actors at the national, departmental and local level. In particular, the research, screening and medical care Center of the Sickle Cell Disease in Cotonou constitute the main developer acting at the national level and under the authority of the Health Department. A collaboration with the NGO « Terre des Hommes » in Abomey to disperse the knowledge to the health worker is effective. Finally, the Beninese parental association « MUFELD » (United Hands of Active Families in the fight against Sickle Cell Disease) also collaborated with the project and offer a discussion room to the families of concerned patients.
When your donor funding runs out how will your idea continue to live?: The project commenced at the request of Pr. Cherif Rahimy and is a part of an overall national strategy. All of the medical staff recruited are from Benin and an agreement has been signed with the Health Department stipulating that after 2 years the medical staff salaries will be covered by the Health Department. The Pr. Cherif Rahimy, who in charge of the project, assures medical competency of the project. The expertise of the Cotonou Center, leaded by the Pr. Cherif Rahimy, is renowned at the national and international level: doctors from neighboring countries are trained there and the dissemination of this competency through the country is assured by the creation of decentralized branches in the Department Hospital Centres. The capitalization and the modeling which took place with the implantation of the first branch in Abomey enabled a new phase, which anticipates the opening of a new branch in Parakou (center of the country) in 2013. An extension of the project in other areas of the country and other countries in the Sub-Saharan Africa is also imaginable.

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