Situation of sickle cell and genetics services in Nigeria
Sickle cell anaemia is the predominant birth defect in Nigeria. However, a variety of other birth defects exists and was reported over a 10 year period in Lagos (1981-1990). The incidences were GIT and CNS defects in 3.9 and 3.5 per 1000 births respectively, while musculo-skeletal, cardiopulmonary and genito-urinary had overall incidences of 2.1, 1.7 and 1.5 per 1000 respectively. Cutaneous and chromosomal defects had relatively low incidences of 0.4 per 1000 births each. Sickle cell anaemia (HbSS) is overwhelmingly predominant with 1 in 4 or 40 million Nigerians carrying the sickle cell trait (HbAS) and 20 per 1000 babies born with HbSS. This translates to over 150,000 babies born annually with sickle cell anaemia. Most of these children do not survive childhood largely because of malaria and bacterial infections and lack of access to appropriate care. Genetic services are largely unavailable and medical genetics speciality is not yet recognised or developed. Efforts to redress the situation have been led by voluntary NGOs functioning as patient/parent support & advocacy groups. The NGOs, known as Sickle Cell Clubs, have created public awareness, sensitised government, trained genetic counsellors, run special clinics, delivered public as well continuing professional education and introduced a cost-recovery early trimester prenatal diagnosis service. The scope and coverage of these services are limited because of absence of funding. The related Sickle Cell Foundation of Nigeria has commenced the development of a National Sickle Cell Centre in Lagos to conduct and promote research, develop essential capacity, undertake advocacy, help evolve a national policy and facilitate its integration into the health care system. A sub-Regional NGO named the Federation des Associations de Lutte contre la Drepanocytose en Afrique (FALDA) has so far linked the Sickle Cell NGOs in 13 West African countries in order to build a synergy for effective advocacy, cooperation and collaboration within the sub-Region. Although its effectiveness has been hampered by lack of support, the network should be a useful tool for the awakened WHO interest in the management and care of sickle cell and other birth defects in Africa.