World Sickle Cell Day Celebration 2016

Dear All,

It is a pleasure to write to you ahead of the 2016 World Sickle Cell Day Celebrations. It would appear that there has been little public communication from the SCSSN since the outing in June 2015. This is partly because much effort has been put into a number of research projects aimed at improving care for individuals with SCD, which is the society’s main thrust of objectives and priorities. These are blood transfusion services in Nigeria, evaluation of a point-of-care test for sickle haemoglobin, which allows healthcare workers to screen for SCD at primary healthcare levels and a pilot on the possibility of using mobile phones to deliver care for individuals with SCD.

Our members have also been working hard to leverage resources to evaluate the economic burden of SCD, to identify phytomedicines used for SCD, the metagenomics of leg ulcers, education intervention in SCD and have been participating in a high-quality international clinical trial on the use of hydroxyurea in SCD, as well as several genetic studies in different clinical centres.

Two groups have also participated in proposal development for a Sickle Cell Collaborative Consortium in Sub-Saharan Africa in collaboration with partners in Ghana, Tanzania, Cameroon and Democratic Republic of Congo and other countries of which, if funded, will help bring workers in SCD together across Africa to develop skills necessary for preventive services, standardised management, develop the skills needed to enroll individuals with SCD into registries to enable them access the best care and provide the infrastructure for future research including clinical trials. Training opportunities will also be available at all levels not only for health workers but for those involved in advocacy and for policy makers so that, together, we can work to reduce the burden of SCD in our communities. I want to urge every member of the Society to pay attention to the control of SCD at community level, especially at primary care centres. This is because many of our people cannot afford to travel long distances to specialist hospitals so it is important that we focus attention at PHCs to see how we can assist in screening, counselling, basic health maintenance of SCD at that level and to strengthen referral pathways to the clinical centres for specific interventions and then help them to go back to the PHCs. As you know, various agencies are already providing some services and support for health at PHCs whether it is for control of malaria, nutrition, and other infectious diseases. SCD could be integrated at this level to save costs.

For this year’s World Sickle Cell Day Celebration, the theme of the Society is Reducing the Burden of Sickle Cell Disease in Our Communities. This will be the running theme for the next 5 years until we internalise it and take concrete steps at zonal levels to achieve our aim of identifying individuals with sickle haemoglobin, offering genetic counselling to those with Sickle Cell Trait, offering counselling, health maintenance and therapeutic services to those with SCD and raising public awareness to reduce stigmatization while increasing advocacy for resources needed to bring real help to people with SCD. The coordinators in different zones should be contacted enquiries.

Lastly I want to bring to your attention to the 6th Sickle Cell Symposium in Accra Ghana from 5-11th July 2016. This is an important education event and it is mostly because of this that the SCSSN is not having a formal event this year to enable members attend. Details are attached to this email. There will be a network meeting in Accra. We urge as members as possible to attend. Look forward to seeing you there.

With Warm Regards
Professor Kunle Adekile