Implementing haemophilia care in Senegal, West Africa

Abstract

Despite significant progres on haemophilia care in developed world, this disease remains unknown in many sub-Saharan African countries. The objectives of this article were to report Senegalese experience on the management of haemophilia care through 18 years of follow-up. This cohort study included 140 patients (127 haemophilia A, 13 haemophilia B), followed in Dakar's haemophilia treatment centre from 1995 to 2012. Our study reported a prevalence of 2.3/100,000 male births, accounting for 11.6% of what is expected in Senegal. From the period 1995-2003 to 2004-2012, significant progress was seen including 67.9% increase in new patient's identification, 11.3 years reduction in mean age at diagnosis (from 15.5 to 4.2 years), lower mortality rate (from 15.3% to 6.8%) and age at death evolved from 6.5 to 23.3 years. Of the 50 haemophilia A patients who were tested for inhibitor presence, 10 were positive (eight severe and two moderate) that is prevalence of 20%. All patients were low responders since inhibitor titre was between 1.5 and 3.8 BU. Disabilities were seen in 36.5% of patients above 20 years old who had musculoskeletal sequels and 39% had no scholar or professional activities in our setting. Implementing haemophilia care in sub-Saharan Africa is a great challenge as this disease is not yet counted in national health problems in many countries. Lessons learned from this study show a significant improvement in diagnosis and prognosis parameters. This emphasizes the needs to set up such follow-up initiatives and to enhance medical and lay cooperation for better results.

Haemophilia in Côte d’Ivoire (the Ivory Coast) in 2017: Extensive data collection as part of the World Federation of Hemophilia’s twinning programme

“…The WFH estimated the total number of patients with haemophilia (PWH) at approximately 400 000, among whom 70%‐75% remain undiagnosed or untreated, mostly in developing countries . As a rare, chronic and cost‐intensive condition, haemophilia is obviously not a priority in developing countries where governments focus their limited resources on public health issues, such as nutrition, immunization, sanitation and treatment of infectious diseases . In sub‐Saharan African countries, research on haemophilia is limited, with data mainly coming from South Africa, Senegal, Zimbabwe, Nigeria and Cameroon .…”

“…8,9 As a rare, chronic and cost-intensive condition, haemophilia is obviously not a priority in developing countries where governments focus their limited resources on public health issues, such as nutrition, immunization, sanitation and treatment of infectious diseases. 2,8,10 In sub-Saharan African countries, research on haemophilia is limited, with data mainly coming from South Africa, 11 Senegal, 10 Zimbabwe, 12 Nigeria 13 and Cameroon. 14 Epidemiological data on haemophilia in the Ivory Coast are scarce.…”

Inhibitor epidemiology and genetic‐related risk factors in people with haemophilia from Côte d’Ivoire

“…[15][16][17][18] In 2015, a World Federation of Hemophilia (WFH) twinning programme was established between the Yopougon Hemophilia Treatment Center (HTC) in Abidjan, Côte d'Ivoire, and the international HTC of the Cliniques universitaires Saint-Luc in Brussels, Belgium. [15][16][17][18] In 2015, a World Federation of Hemophilia (WFH) twinning programme was established between the Yopougon Hemophilia Treatment Center (HTC) in Abidjan, Côte d'Ivoire, and the international HTC of the Cliniques universitaires Saint-Luc in Brussels, Belgium.…”

Assessing the quality of care for haemophilia at the Yaoundé reference treatment Centre of Cameroon

“…Unfortunately, about 75% of them receive little or no treatment. Implementing haemophilia care in sub-Saharan Africa remains a great challenge because this disease is not yet considered a national health problem in many countries [4]. In Cameroon, based on the estimations by the WFH, they may be up to 1800 PLWH.…”