Driving coordinated global action to elevate sickle cell disease on national, regional, and global health agendas.
Strategic Priorities
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.
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.
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.