What is Sickle Cell Disease

SCD is a genetic blood disorder that affects the production of hemoglobin, the protein in red blood cells that carries oxygen throughout the body. People with SCD have abnormal hemoglobin molecules called hemoglobin S, which can cause red blood cells to become rigid, sticky, and sickle-shaped. These abnormal cells can block blood flow, leading to pain, anemia and increased risk of infections, among a host of other complications.

Sickle cell disease is one of the most common inherited blood disorders. Every year, approximately 274,000 children are born with SCD, with nearly 230,000 of those cases found in Africa.  Most importantly, the disease is extremely lethal for children in high-burden countries, with mortality rates for children under 5 in Sub-Saharan Africa ranging between 50% to 90%.

Despite its significant disease burden and recognition by the World Health Organization (WHO) as a public health priority, SCD has been largely absent from global and national health agendas.

Insufficient resource mobilisation and inadequate funding for program implementation in high-burden countries are the primary barriers to advancing efforts to tackle the disease.

To address these challenges, the World Coalition on Sickle Cell Disease provides a unique platform for elevating SCD and enhancing coordinated action on a global scale.

Together, we can make a difference and provide hope to those affected by SCD.

A growing health challenge

500 children die each day of SCD complications, mostly in Sub-Saharan Africa.

In addition to the pain inflicted on patients, the economic costs associated with SCD are considerable. A report by The Economist Intelligence Unit found that annual costs associated with SCD were approximately $9.1b across 11 Sub-Saharan countries. (Countries: Ghana, Angola, Benin, Cameroon, Republic of the Congo, Democratic Republic of the Congo, Kenya, Madagascar, Nigeria, Senegal, Uganda).

Worse, the challenges raised by SCD are likely to only increase in the coming decades. By 2050, the number of newborns with SCD is expected to grow by 30%, globally.  Despite this significant disease burden, SCD remains a generally neglected disease area.

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In addition to insufficient resource funding at the national and international levels for program implementation, other critical challenges in the field of SCD include: stigma, fragmentation of efforts between SCD-oriented organizations, insufficient stakeholder collaboration, lack of reliable data, underinvestment in disease and program research, lack of healthcare capacity and infrastructure, and insufficient support for more accessible and affordable treatments.