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World Sickle Cell Day
June 19, 2019

In support of World Sickle Cell Day, the Sickle Cell Disease Coalition is raising awareness of SCD in Africa in an effort to improve health outcomes for people with the disease from infancy to adulthood.

SCD continues to be a major global public health issue. It remains a major killer of infants and children in the developing world, particularly in sub-Saharan Africa and India, where an estimated 50–90 percent of infants born with SCD will die before their fifth birthday.

The public service announcement directs people to a global resources library compiled by members of the Coalition that identifies screening sites and other treatment centers in African regions, as well as other educational tools and resources. Immediately following the PSA, stay tuned for a short documentary from the American Society of Hematology.

Global Resource Library

Explore our Global Resource Library for helpful information on sickle cell disease.

View Global Resources

The Current State

By 2050 the number of people with SCD is expected to increase by about 30 percent globally.

Organizations such as the World Health Organization (WHO) and United Nations (UN) have recognized SCD as a global health issue. In 2006, the World Health Assembly passed a resolution recognizing SCD as a public health priority and called on countries to tackle the disease. This resolution was also adopted by the United Nations in 2009.

90%+ of children with SCD do not survive to adulthood in resource-poor countries.

Prevalence of sickle cell trait varies greatly between different regions but reaches levels as high as 40 percent in some areas of sub-Saharan Africa, eastern Saudi Arabia, and central India.

30% Growth in the number of people with SCD expected globally by 2050.

Stepping Forward

Short-term goals:

  • Establish and/or expand newborn screening and early intervention programs.
  • Increase awareness and education of governments and philanthropic groups (extend global awareness beyond individual efforts by establishing a data-driven, solutions-based case describing SCD and outcomes).
  • Marry newborn screening programs with treatment (start as pilot studies and identify cultural barriers).
  • Work with local stakeholders to develop standard-of-care guidelines that apply to specific, low-resource areas globally.
  • Investigate therapeutic modalities that can be implemented worldwide.
  • Sponsor a “hemoglobinopathies institute” to foster regional education and training (provide certificate of participation to allow caregivers to remain in SCD clinics as “specialists”).
  • Establish fellowships to bring African and Indian physicians to the United States.

Progress

The 3rd Global Congress on Sickle Cell Disease held in Bhubaneswar, India on February 21-24, 2017 was attended by more than 700 participants, including patients, caregivers, physicians, and researchers from 34 countries. Based on the theme: “Breaking the Barriers,” the Congress defined the priorities and goals for SCD care, research and education in challenging resource-limited settings and culturally diverse environments globally.

Long-term goals:

  • Stabilize funding streams and sustainability of programs globally.
  • Develop a structured, thoughtful approach to adult sickle cell care in low-resource settings.
  • Enhance use of community-based organizations for care access and advocacy.
  • Foster bi-directional training.
  • Establish feasibility for bringing high-risk/high-cost curative therapies to low-resource settings.

Why it matters

Approx. 1,000 children are born with SCD in Africa every day, and more than half will die before their 5th birthday.
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The status quo is unacceptable & we are setting out to change it. Join us to #ConquerSCD! www.scdcoalition.org

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