A JOINT COMMUNIQUE RELEASED BY THE SICKLE CELL SUPPORT SOCIETY OF NIGERIA AND THE NIGERIAN SOCIETY OF HAEMATOLOGY AND BLOOD TRANSFUSION AT THE END OF THE WEBINAR TO COMMEMORATE THE 2020 WORLD SICKLE CELL DAY
We bring you greetings from the Sickle Cell Support Society Nigeria (SCSSN), who in collaboration with the Nigerian Society of Haematology and Blood Transfusion (NSHBT) has toiled to make this celebration and awareness Webinar a huge success.
Sickle cell disease (SCD) has assumed public health proportions with approximately 300,000 new births annually globally, with major health implications especially in Sub-Saharan Africa, where Nigeria accounts for about three quarters of the disease burden. Arising from the deliberations at this august meeting, our Societies feel compelled to release this communique targeted at influencing policy decisions and advancing patient care across Nigeria. The highlighted salient points are as follows;
- Failure to highlight the contribution and linkage of SCD to the poverty and mortality indices of children and mothers in Nigeria by the major development partners.
- Poor integration of SCD prevention and control services with maternal and child health services.
- Inability of government to mobilize the much needed resources for SCD interventions.
- The low usage of Hydroxyurea (HU), which is an efficacious pharmaceutical intervention in SCD is due to unjustified concerns about its toxicity and safety, in addition to lack of knowledge and training of health care providers.
- With increased awareness and usage of HU, we can achieve significant reduction in pain crisis, transfusion requirements, hospital admissions and acute chest syndrome with improvement of quality of life, as well as reduced frequency and duration of hospital admissions.
- There are other recently-licensed drug therapies such as L- Glutamine, Crizanlizumab, Voxelotor and promising novel treatment modalities including Omega 3 fatty acid either used alone or in combinations. Funding and support are needed for therapeutic trials using these novel agents in Nigeria.
- That the Country has been carrying out bone marrow transplant in Benin for some years now and there is urgent need for support in terms of training and up-scaling of this curative treatment modality.
- That gene editing is a promising treatment modality for SCD; the country should train local experts to prepare to participate in this field.
- That two innovative point-of-care testing devices for SCD have been validated nationwide and their feasibility, in newborn screening for SCD using immunization programs in Primary Health Care Centres, has been demonstrated in a ground-breaking study published this week in the Lancet Haematology.
- That progress in collaborative research in the last three years through the Sickle Pan African Research Consortium (SPARCO) project has resulted in the enrollment of over 4,700 patients in SCSSN Clinical Centres in a centralised electronic, patient-consented SCD database.
- That multilevel, standard-of-care guidelines have been developed by SPARCO, which can be used to harmonize the care given in our hospitals with training of health care workers in its use.
- Delta state is making good progress in newborn screening for SCD. However, the challenge has been the high cost of reagents, and equipment maintenance.
We therefore recommend:
- The adoption of multilateral partnership approach for SCD considering the ramifications of issues surrounding the disease in Nigeria.
- The implementation by partners and stakeholders of the National Multi Sectoral Action Plan for the Prevention and control of Non-Communicable Diseases (2019-2025) as it applies to SCD. This should include WHO Country Office, the academia, indigenous and international pharmaceutical companies.
- Subsidizing patient treatment and funding bone marrow transplant training and practice across the country to stem the tide of medical tourism for these treatments.
- Increased sensitization and health education of both patients and caregivers on SCD
- Training of health care providers with emphasis on implementation of standard-of-care guidelines
- Focus on Implementation Science as related to SCD control and management through facilitation, support and coordination of SCD research and utilization of research findings
- Streamlining and coordinating of activities of NGO/CSOs in the SCD space.
- Adoption of new evidence showing that newborns can be reliably screened for SCD within the existing National Program on Immunization program, using POCT and evidence-based interventions given to affected babies to reduce the burden of SCD in Nigeria
- National Health Insurance Scheme to support newborn screening and early intervention for SCD as is being done in other African countries.
We thank you all and we pray that going forward we will all work together to ensure the burden of sickle cell in Nigeria is made lighter. Keep Safe and God bless Nigeria.
Professor Adekunle Adekile
Sickle Cell Support Society of Nigeria (SCSSN)
Professor Aisha Gwarzo
Nigerian Society for Haematology and Blood
Professor Obiageli E. Nnodu,
Director, Centre of Excellence for Sickle Cell Disease Research & Training, University of Abuja
SPARCO Nigeria PI Convener
Abuja, 25th June 2020
Rapporteurs: Dr. Anazoeze Madu – (Vice Chair, NSHBT, SPARCO Nigeria Site Lead), Dr. Abdul-Azziz Hassan (Secretary NSHBT, SPARCO Nigeria Site Lead), Dr. Hezekiah Isa (Secretary SCSSN, SPARCO Nigeria Coordinator) and Dr. Samuel Adegoke (SPARCO Nigeria Site Lead)