The Burden of Sickle Cell Disease
People living with sickle cell disease and their caregivers shoulder immense burdens, including risk of severe complications, early death, societal discrimination, compromised quality of life, and overwhelming financial hardships.
- It is estimated that 4 million live with sickle cell disease worldwide
- Every year it is estimated that up to 300,000 children are born with sickle cell disease worldwide; approximately 200,000 are born annually in Africa with sickle cell disease
- In Africa, 50-90% of children die before 5 years of age. Many before their parents know their sickle cell disease diagnosis and many of these deaths are preventable
- While a cure is not widely available, early diagnosis coupled with education, antibiotics, specialized vaccines and a disease modifying medication called hydroxyurea have proven to reduce early mortality and significantly improve quality of life
- Based on current research, investments to access high quality healthcare can save millions with sickle cell disease in the next 20 years
A Call to Action
The overwhelming burden of sickle cell disease in Sub-Saharan Africa, the highest in the world, highlights the critical need for a coordinated global effort to:
- Support research, advocacy, and the dissemination of information at global, national, and local levels across Sub-Saharan Africa
- Adapt and implement proven methodologies across regions in Sub-Saharan Africa to expand newborn screening, establish national registries, and enhance case monitoring
- Introduce cost-effective interventions for palliative care, pain management, curative treatments, and psychosocial support, ensuring affordability for nations and minimal cost for patients
- Establish networks of best practices and centers of excellence in Sub-Saharan Africa to strengthen consortiums, partnerships, and national initiatives
Our Approach
Sickle Gene International Foundation will work with the global sickle cell disease community of stakeholders. Through private-public partnerships we will mobilize resources to:
- Support local Sub-Saharan African organizations that aim to reduce burdens associated with sickle cell disease
- Advance the delivery of life-saving interventions that are integrated into health systems, both public and private, in Sub-Saharan African countries