The third Conference of Sickle Cell Support Society of Nigeria (SCSSN) was successfully held at the Enugu Campus of the University of Nigeria with the theme: “Reducing the Burden of Sickle Cell Disease in our Communities” from Wednesday, 23rd to Friday, 25th of August, 2017.
The three-day conference had the presence of a total of 199 participants including sixty-six students and staff of the Community Health Trainer’s School University of Nigeria Teaching Hospital, Enugu. The keynote lecture was delivered by a renowned Professor of haematology, Professor Lucio Luzzatto with three plenary sessions and demonstration of point of care tests for diagnosis of SCD. The President of the Ghana Sickle Cell Foundation, Professor Kwaku Ohene-Frempong also graced the occasion and shared his wealth of practical experience in new born screening and sickle cell disease (SCD) work in Ghana. The Desk Officer of Sickle Cell Disease, the Federal Ministry of Health (FMOH), Dr. Alayo Sopekan and gentlemen of the press all participated. The conference closed with the annual general meeting on August 25th, 2017.
PRESENTATIONS AND DISCUSSIONS
Pre-Conference Workshop held on the 23rd August, 2017
The welcome address was delivered by Professor Adekunle Adekile, Chairman, SCSSN.
Major topics of discussion were primary health care and health education in SCD, comprehensive care of SCD, prevention and counselling. There were also presentations of abstracts of high quality scientific work.
Tree plenary sessions were by erudite scholars and renowned researchers in the field of SCD. Highlights of the plenary sessions included discussions on:
- Multi-sectorial approach in the control of SCD
- Early detection and appropriate intervention in the control of SCD
- Setting up a new-born screening program for SCD
- Setting the research agenda for SCD and opportunities for capacity building
- Reports from the Zones
- Genomics research on SCD and update on the NIH-funded Sickle Pan African Research Consortium.
The Sickle Cell Support Society of Nigeria noted that despite an enabling policy and purchase of equipment for new-born screening in the MDG, SCD Screening Centres, implementation has been fraught with challenges of procuring reagents resulting in poor utilisation and redundant machines.
Availability of Transcranial Doppler machines for stroke risk assessment and primary stroke prevention is still poor.
It was agreed that the most practical intervention for stroke prevention is hydroxyurea therapy since chronic blood transfusion seems herculean and impractical in most of our communities.
It was noted that SCD-related activities of NGOs and researchers in the country are currently not co-ordinated.
The dearth of funding for research and lack of an enabling environment were discussed at length.
More co-ordination in research and NGOs’ activities is necessary to make impact. It was suggested that Nigeria and its government take responsibility for the sickle cell problem rather than rely on international funding while missing components of comprehensive SCD care should be addressed.
The participants rose from the AGM with the following recommendations:
- The Sickle Cell Support Society of Nigeria (SCSSN) noting the lack of data on the true prevalence of SCD in Nigeria is ready to partner with the Federal Ministry of Health to obtain accurate data for SCD in Nigeria
- The SCSSN seeks an end to the current redundancy of the machines for new-born screening in the MDG Sickle Cell Centres and calls on the Federal Ministry of Health to make annual budgetary provision for reagents and consumables for new-born screening, as well as recalibration and preventive maintenance of the current machines at the centres.
- The SCSSN is ready to collaborate with and coordinate various SCD-related NGOs to present a united front to tackle SCD in Nigeria and encourages collaboration among researchers. The SCSSN recommends that TCD machines and expertise be made universally available to offer standard-of-care for the prevention of stroke in children with SCD.
- The SCSSN noted the lack of data on SCD and recommends a centralised sickle cell registry fed by the new-born screening programme and community screening in the different zones.
- The SCSSN calls on the Government to increase research funding for sickle cell disease.
- The SCSSN wants a co-ordinated judicious deployment of resources as recommended to make greater impact in reducing the burden of SCD in Nigeria.