United Against Sickle Cell Disease
A GLOBAL COALITION
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Sickle Cell Disease (SCD) is a genetic blood disorder that affects millions of people worldwide, causing immense pain and suffering, especially in children.
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.
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%.
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.
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.
the road ahead
Overcoming these many barriers and challenges, and increasing overall interest around SCD, will be critical to invigorating efforts to combat the disease and essential to meet the Sustainable Development Goals.
To help ensure there is a long-term mechanism to advance efforts to combat and treat SCD, we have created the World Coalition on Sickle Cell Disease.
Initially founded by the World Health Organization, the World Bank, the US Department of Health and Human Services, and private sector leaders, this new Coalition provides a unique, multi-stakeholder and cross-sectoral platform for elevating SCD and enhancing coordination of programmatic efforts on a global scale.
Priorities for Action
“By working together, we can elevate this long-neglected issue on the global stage and finally give SCD patients the attention and support they deserve”
Scale Newborn Screening
Early detection and diagnosis of sickle cell disease is crucial for improving patient outcomes. Scaling up newborn screening programs is a top priority to ensure that all infants are screened for the disease shortly after birth. This can help identify individuals who have sickle cell trait or disease, allowing for early intervention and treatment to prevent serious complications.
Integrate SCD Management into Primary Care Services.
Sickle cell disease requires lifelong management and care. To ensure that patients receive appropriate treatment and support, it's important to integrate SCD management into primary care services. This can help to improve access to care, reduce healthcare costs, and improve patient outcomes by providing a comprehensive approach to managing the disease.
Adequately resource SCD programs, including research.
Sickle cell disease is a complex condition that requires ongoing research to develop new treatments and improve patient outcomes. Allocating resources to support SCD programs and research is essential to address the current gaps in knowledge and improve the quality of care provided to patients.
Expand access to care.
Increasing access to healthcare services, improving the quality of care provided, and addressing the social and economic factors can positively impact patients with the disease. By expanding care, we can ensure that all individuals with sickle cell disease receive the support and treatment they need to live healthy and productive lives.
Reconfigure SCD action as an investment.
With SCD, small investments can have a huge impact. By investing in early diagnosis, improved access to care, research and awareness, we can improve patients’ quality of life – while saving lives. Only by laying the groundwork of strong healthcare can we fully capitalize on the promise of gene therapy and other cutting-edge treatments.
The Coalition
We are an international public-private partnership that aspires to be the global focal point for efforts to address sickle cell disease in low- and middle income countries. The Coalition gathers a diverse group of stakeholders, including national governments, international organizations, financial institutions, foundations, health care providers, patients’ groups, medical organizations, pharmaceutical companies and other private sector entities – each of which brings unique insights and capabilities to the table.
Together, and in collaboration with external partners, we will work to vastly reduce childhood mortality associated with SCD, and to significantly improve the lives of those living with the disease in LMICs, addressing some of the most urgent priorities.
Engaging country stakeholders in developing national SCD strategies, including advocacy and education.Working with donor communities to mobilize resources to support SCD efforts.Acting as a repository of best practices to ensure quality of care can be provided regardless of the geographic location of the individual. Join us
If you are an organization interested in getting involved in the fight against sickle cell disease, please don't hesitate to reach out to us at the World Coalition on Sickle Cell Disease. We welcome partnerships with organizations who share our vision and mission to raise awareness about sickle cell disease and provide resources and support for individuals and families affected by this blood disorder. Through collaboration and cooperation, we can make a meaningful impact in the lives of those affected by sickle cell disease and work towards finding a cure. Whether you have a specific project or idea in mind, or simply want to learn more about our organization, we would love to hear from you. Together, let's strive towards a future where sickle cell disease no longer poses a threat to the health and wellbeing of individuals and communities worldwide.
