THE 2016 ANNUAL REPORT Contents Message from Chairman Board of Directors Sickle Cell Foundation Nigeria 4 Brief about Sickle Cell Foundation Nigeria 6 Departmental/Services Reports 7 Advocacy & IEC Programmes and Activities 13 Partnerships & Funding 19 Annex 22 Financials 23 List Of Donors/Sponsors (2016) 28 Photographs 29 4 5 Message from Sickle Cell Foundation Nigeria The year 2016 was a difficult year for Sickle Cell collaboration with LUTH–as part of SCFN’s • SCFN tackled the issue of sustainable funding key to achieving the health-related Sustainable Foundation Nigeria and for Nigeria as a whole. Being research coordination work)–on the use of head-on; while vigorously pursuing our tradi- Development Goal/targets; the document will a not-for-profit NGO that depends largely on dona- Transcranial Doppler (TCD) Ultrasound scan; a tional revenue generation strategies, we sought serve as a tool for SCFN to key into SDG pro- tions for revenue, the challenges were daunting but major outcome of this workshop/project is the out creative, forward-looking strategies, reg- gramming and funding for the foreseeable future. we tackled them and recorded a number of achieve- equipping of 6 centres across the country with istering with FundsForNGOs–a global online ments; these include the following: TCD machines and resultant increased access platform. Funds were raised from across the As we turn the page on 2016, we at SCFN have set • Successful Hip Replacement Surgery for 25 indi- to the service for many more children with SCD. globe for the two projects approved for the our sight to the future with hope. The year 2017 looks gent persons with Sickle Cell Disorder (SCD) who foundation. to be a promising one as experts have predicted had degeneration of the hip joint/joints. These • SCFN successfully organized and facilitated a that the Nigerian economy is expected to rebound. beneficiaries now have a new lease of life. workshop, in collaboration with the WHO, for the • Still in order to ensure sustainable funding, SCFN Welcome 2017! development of a Handbook on Management of commissioned a Consultant to come up with a • Training of Trainers (T.O.T) workshop (in SCD for Doctors and Nurses. The handbook will Strategy for the Control of SCD in Nigeria as a Professor Olu Akinyanju (OON) serve as an indispensible, portable tool for doc- tors and nurses across the country in their daily encounters with SCD patients. As we turn the page on 2016, we • SCFN began to collaborate meaningfully with the numerous sickle cell NGOs – mostly in Lagos at SCFN have set our sight to the State. Inter alia, we organized a seminar on SCD for the NGOs, ensuring that they had accurate, future with hope. The year 2017 up-to-date information about SCD and intimated them about the services we offer. This is for the looks to be a promising one as benefit of the NGOs and the public at large. experts have predicted that the • SCFN’s presence on both mainstream and social media increased markedly and this has impacted Nigerian economy is expected to positively on our image and recognition factor as well as on our IGR through increased patronage of our services. rebound. Welcome 2017! SICKLE CELL FOUNDATION NIGERIA / 2016 ANNUAL REPORT SICKLE CELL FOUNDATION NIGERIA / 2016 ANNUAL REPORT 6 7 Sickle Cell Foundation Nigeria (SCFN) is a non-gov- SCFN operates as a Private Public Partnership (PPP) ernmental and non-profit-making organization with the Nigerian government through its affiliations dedicated to the proper care and control of sickle with the Lagos University Teaching Hospital/College cell disorder in Nigeria. SCFN was registered in of Medicine and the Federal Ministry of Health, and November 1994 to address important issues such the clinics supervised in Lagos, Edo, Delta and as capacity building, research, policy development, Kano States. In addition, SCFN is associated with implementation, monitoring and evaluation neces- the Department of Public Information (DPI) of the sary for the sustained management and control of United Nations. sickle cell disorder in Nigeria. Vision In accordance with World Health Organisation To alleviate the burden of sickle cell disorder on the (WHO) recommendation, SCFN established the country and to ensure that all affected persons can National Sickle Cell Centre–the first comprehensive live normal pain-free lives. sickle cell centre in Africa. It is situated opposite the Lagos University Teaching Hospital (LUTH) in order Mission to facilitate an effective and sustainable collabora- To develop a world class National Sickle Cell Centre tion with a teaching hospital and medical research that will drive the search for effective solutions to centre. Proudly and significantly, all funds for its the problems associated with sickle cell and related development were donated in Nigeria by corporate disorders in Nigeria and beyond. and individual Nigerians. SICKLE CELL FOUNDATION NIGERIA / 2016 ANNUAL REPORT SICKLE CELL FOUNDATION NIGERIA / 2016 ANNUAL REPORT 8 9 DepartMental/SERVICES Reports DepartMental/SERVICES Reports 1. Dedicated Sickle Cell Clinics 2. Pre-Natal Diagnosis (PND) & the MTN It is important to note that PND help parents, who Laboratory parameter Number In line with our objective to improve the standard DNA Laboratory are healthy carriers with HbAS, allay their fears Blood group 253 of health care for persons with sickle cell disor- Prenatal diagnosis (PND) is a procedure for deter- and anxiety over the birth of their baby. Where the Reticulocyte count 21 der (SCD), the SCFN, with support from the MTN mining the genotype of an unborn child (foetus) child is affected (HbSS), early interventions for the MP 47 Foundation, continued its collaboration and support in early pregnancy. PND is usually requested by a affected newborn can be instituted. Blood film report 75 with 6 dedicated Sickle Cell Clinics in Delta, Edo, couple who have a risk of bearing children with a Kano and Lagos States. Essential drugs and free particular disorder, usually an inherited one, such 3. The Reference Haemoglobin ISC 00 consultations were provided in all clinics. However, as SCD. PND makes it possible for couples at risk Laboratory HbA1C 28 dwindling funds from sponsors has impacted on the to have healthy offspring or prepare for an affected The Reference Haemoglobin Laboratory (RHL) of TOTAL 3,200 dynamics of the clinics resulting in reduced clinic pregnancy, thus relieving the couple of anxiety the Sickle Cell Foundation Nigeria offers haema- visits by beneficiaries especially when drugs run before the child is born. tological, clinical Laboratory tests which help to In addition, as part of activities to commemorate out of stock for long period of time. In 2016, a total examine blood and its components for the diagno- the World Sickle Cell Day 2016, the Laboratory was of 21,664 patients were seen and treated in all the The uptake of this service by couples at risk of bear- sis of diseases as well as the proper monitoring of fully involved in the free genotype and blood group clinics–a significant decline when compared 34,843 ing children with sickle cell disorder continues to individuals living with Sickle Cell disorder and other testing during the outreach programme to Ijede patients seen in 2015. increase. In 2016, a total of 155 prenatal diagnosis haemoglobinopathies. The Laboratory is equipped LCDA in Ikorodu, Lagos. A total of 360 people aged procedures were carried out between January and with modern and standard Laboratory equipment to from 1 – 60 years were sampled and the table below Nevertheless, this intervention continues to demon- December. This is a significant increase in the num- offer the following services: shows the outcome of the exercise: strate to stakeholders, the positive impact of ber of procedures done in 2015 (126). 1. Full Blood Count (FBC) dedicated Sickle Cell Clinics on the health and lon- 2. Erythrocyte Sedimentation Rate Table showing Haemoglobin Phenotype Test Results gevity of SCD-affected persons. We are hopeful The genotype results from the procedures are as 3. Sickle Solubility Test Hb Phenotype Number Percentage (%) that with support from well-meaning Nigerians and follows: 4. WBC Differential Hb AA 239 66.4 corporate bodies, as well as collaboration with rel- 5. Blood film report SN Genotype Number Percentage (%) Hb AS 86 23.9 evant stakeholders (including state governments), 6. Reticulocyte Count 1 HbAA 52 33.5 we will be able expand coverage to all states of the 7. Irreversible sickle cell count (ISC) Hb AC 11 3.1 federation. 2 HbAS 66 42.6 8. Hb Electrophoresis (Alkaline electrophoresis) Hb SS 20 5.5 3 HbSS 30 19.4 9. ABO grouping and Rhesus factor testing. Hb SC 3 0.83 Impact: Although patronage of the clinics declined 4 HbAC 2 1.3 10. Haemoglobin detection and Quantification Hb AG 1 0.27 in 2016 from the previous year, there is evidence that (Hb A, Hb S, Hb C, Hb A2, Hb D etc). 5 HbSC 2 1.3 TOTAL 360 they continue to improve the quality and longevity 6 HbAWillamette 1 0.6 of lives of persons with SCD. Data from the clinics Haemoglobin A1c determination (very useful in for Table showing Blood Group Test Results 7 AGPhiladephia 1 0.6 shows that about 70% of the patients are in steady monitoring diabetes) Blood group Number Percentage (%) state, an indication that frequency of painful cri- 8 SGPhiladephia 1 0.6 A Rh “D” positive 58 16.2 ses as well as ill health have reduced significantly. In 155 In 2016, the following test parameters were carried O Rh “D” positive 178 49.6 addition, reported deaths are at single digits levels. out in the lab on a total number of 1,720 patients: This shows general improvement in the health out- Impact: The National Sickle Cell Centre remains at B Rh “D” positive 78 21.7 Laboratory parameter Number come for a condition known specifically for its high the forefront of offering PND services in Nigeria.