SCSSN Chairman’s Speech 2017 Conference

Prof Kunle Adekile
Prof Kunle Adekile giving speech

It gives me great pleasure to welcome you all to this historic conference of the Sickle Cell Support Society of Nigeria and the Nigerian Sickle Cell Disease Network. Although we have had 2 previous conferences, this is the first time it is held outside of Abuja and we hope in future, other zones will have the opportunity of hosting us. This is important to raise awareness in all parts of this large and great country. I want to particularly welcome our keynote speaker, Prof. Lucio Luzzatto, who is not a stranger to many of us, especially those of us who were his students and mentees. He is one of the giants of hematology all over the world and we are proud that he started his career in UCH, Ibadan in the late 60s. This is a homecoming for him and I am happy he got to eat jollof rice last night.
As we have heard over and over, Nigeria has the dubious honor of carrying the highest burden of sickle disease worldwide. With a population of ~167 million and a birth prevalence of 2-3%, this translates to >100,000 affected births per year, roughly half the total born in the whole world. The country, therefore bears the legacy of this disease and should be in the forefront of the fight to control it. This informed the founding of the Nigerian Sickle Cell Disease Network in 2010, which morphed into the Sickle Cell Support Society of Nigeria, and registered by the Corporate Affairs Commission in 2013.
The SCSSN is a network of Nigerians both at home and in the Diaspora, with interest in SCD and consists of physicians, scientists, patients, NGOs and others. Currently we have a membership close to 500 and it is growing. The cardinal objectives of the society are advocacy for SCD, collaborative research and capacity building. I am happy to note that we have recorded major successes on all these fronts. We contributed significantly to the SCD uniform management and counselling guidelines and the handbook for affected families, which have been ratified and distributed by the Federal Ministry of Health. We have organized conferences and workshops to raise awareness in all the different zones of the country.
In terms of research, we have carried out collaborative, multicenter surveys, involving more than 20 centers in the country, which have led to landmark publications in international journals. We recently completed a trial of a Point-of-Care-Testing Device and our experience was published in Hemoglobin. These POCTs are going to be very useful in quick diagnosis and the over-all management of the disease.
In the area of capacity building, we have obtained sponsorships for many young deserving members to obtain clinical, professional and research training abroad. Apart from the MSc of the University of London, we were fortunate to obtain scholarships for PhD and MSc programs through the FIOCRUZ organization of Brazil in 2014. Indeed Dr. Ademola Adegoke is the first of the lot to complete his PhD program and he is here at this conference. Dr. Adekunle Alagbe of UCH and Barth Chukwu of UNTH have just successfully defended their MSc theses, while Drs. Oladele Olatunya of EKSTU, Mr. Uche Ndidi of ABU and Chinedu Okeke of University of Abuja are finishing soon. We continue to look for more opportunities and, of course, to start our own local programs.
We acknowledge the efforts of the Federal Ministry of Health in the establishment of the 6 MDG sickle cell centers and the promotion of newborn screening. There is still a lot to do in this regard especially in streamlining and upscaling the efforts. I want to take this opportunity to again appeal to the federal government for the need for a comprehensive national policy for the control of SCD. A bill to this effect was presented to the National Assembly four years ago. This needs to revisited as a matter of priority. Sickle cell patients need to be supported and they should have access to subsidized, if not free medical services.
However, given the large numbers of patients in the country and the fact that most of them live in rural areas, there is a need to change our orientation on how care is provided for them. We have to empower primary healthcare workers at the community level in the diagnosis of patients, provision of routine counselling and treatment and the identification of those for referral to the hospital. That is why we incorporated a training program for community health workers in the agenda for this conference. We have prepared a curriculum for inclusion in the training program for Community Extension Workers.
I wish to thank members of the organizing committee for their hard work and commitment in arranging this conference and also our sponsors for their generous support. I thank you all for your attendance and attention.