Sickle Cell Patients and Practitioners
Community of Practice
An innovative initiative of the Africa Sickle Cell Organization and the World Coalition of Sickle Cell Disease to enhance dialogue amongst SCD patients and practitioners to improve policy and health delivery.
The SCD Patients and Practitioners Community of Practice (COP) to facilitate discussions between patients and practitioners to improve health outcomes of adults living with sickle cell in sub-Sahara Africa (SSA). The COP aims to fill the gaps in healthcare delivery to inform policy and practice for adult patients with SCD.
The Problem
It is estimated by the NCDI poverty commission, Sickle Cell Disease (SCD) individuals living among the poorest billion lose up to 50 years of healthy life. The childhood onset of SCD and the lack of early intervention in many settings in sub-Sahara Africa (SSA) result in multiple complications and great disability in individuals with SCD in their adult years.
Age of mortality for individuals with sickle cell is changing from early childhood and adolescence to young and mature adulthood years. The increasing implementation of proven interventions of new-born screening, penicillin and malaria prophylaxis, improved access and uptake of hydroxyurea and utilization of other disease modifying therapies has resulted to this change in the pattern of mortality over the past years.
Our Approach
We will bring together patients and practitioners i.e. (healthcare providers, decision makers, researcher, stakeholders) across sub-Sahara Africa in yearlong virtual convenings held every two months. The final proceedings from the discussions will be published in a peer reviewed article. The proceedings reports and publication will highlight barriers, identify solutions and inform patient centered policy, programming, healthcare delivery to improve quality of life for adults with SCD
Are you an adult SCD patient, healthcare provider, decision-maker, or advocate in the field of Sickle Cell Disease? Become part of our Community of Practice and contribute to shaping better health outcomes for adults living with SCD in Sub-Saharan Africa.
Enter your email in the form below to download the proceedings from our SCD Community of Practice! The proceedings outline the critical discussions that took place during this COP and highlight the major themes that came about during these sessions.
