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The actual numbers of individuals with sickle cell has not been determined but is in the millions worldwide.  People from varying ethnic and racial backgrounds are living with sickle cell including individuals of African American, Greek, Latino, SE Asian, African, Middle Eastern, Caribbean, Central and South America and other European ethnicities.

While the life expectancy of patients with sickle cell disease has increased with improved childhood treatment, many lack access to specialized providers needed who have an understanding of chronic multidisciplinary care management.  Even in the United States, equity of care and lack of access to care and shortages of transition to adulthood programs are prevalent.

Sickle Cell disease is one of the most common inherited blood disorders in the United States, but the exact number of people living with sickle cell disease and sickle cell trait are unknown.

Significant disparities exist for funding for inherited blood disorders. Although sickle cell is three times as prevalent as cystic fibrosis, NIH funding cystic fibrosis was $2807 per person vs $812 per person for sickle cell. In philanthropy $7,690 was spent per person with cystic fibrosis vs $102 per person with for sickle cell.  This also translates into less research dollars and less discoveries of new treatments. (Farooq, Mogayzel and Lanzkron: JAMA Network Open, 2020:3)

If individuals and families living with sickle cell are afforded equitable care, treatment and employment opportunities this would also translate into increased economic contributions to the communities, states and nation in which they live.