Background
With its current population at 167 million, Nigeria is the most populous African country. It has the highest sickle cell disease (SCD) burden in the world with ~19 of 1000 births affected with the disease. Although there have been several SCD associations and other non-governmental organizations devoted to the disease, a concerted truly national advocacy group had been lacking.
Birth of the Sickle Cell Support Society of Nigeria
At the global SCD congress in Accra in July 2010, the Nigerian delegates met and decided to launch the Nigerian Sickle Cell Disease Network, bringing together Nigerian doctors, scientists, NGOs and patients with interest in the disease, both within the country and in the Diaspora.
Achievements
A Development of a national policy on NCD, contribution to the position paper presented by the Nigerian President at the 2011 UN Summit on Non-Communicable Diseases, development of IEC materials and management guidelines for SCD, have been produced four model comprehensive SCD centers have been established in the country, advocacy for the provision of pneumococcal vaccines for children under the EPI, adaptation of the NIH parents handbook for Nigeria, and a registry of dedicated SCD clinics in the country has been prepared. A comprehensive Bill for an Act for the Prevention, Control and Management of SCD is now before the National Assembly. Oyo State commenced newborn screening.
Collaborations
Several partnerships are already active in different parts of the country involved with research and other projects including the following: Sickle cell cohort study, infection surveillance, genomic studies (H3Africa, African Pharmacogenomics network), Sickle CHARTA, pilot newborn screening programs, collaboration with King’s and Guy’s Hospitals, London and FIOCRUZ foundation, Bahia, Brazil, University of Chicago.
Future Direction and Conclusion
The Sickle Cell Support Society of Nigeria has made progress in advocacy for the control of sickle cell disease, building collaborations for scientific research, establishing guidelines for uniform management of patients with the disease at primary secondary and tertiary health care levels. This has been done by working closely with the government, professional groups both within the country and in Diaspora.These are indeed very exciting times in the field of SCD in Nigeria. We need to expand the activities of the network and we seek more international partnerships.