Please check back soon for our new and improved website about sickle cell disease (SCD).

Fast facts about SCD

US statistics regarding SCD1-3

United States icon

Americans living
with SCD1

Lower mean life expectancy in SCD2,3

Bar chart illustrating that African Americans with Sickle Cell Disease have a mean life expectancy of 40 years while the national average life expectancy of African Americans is 73 years.

African Americans
with SCD

African Americans
national average

1 in 365

Black or African Americans
born with SCD1

How does this compare to other serious conditions?4


1 in 228
Americans diagnosed with
1 in 800
American women diagnosed with
breast cancer
1 in 1,010
American men diagnosed with
prostate cancer


Although more people in the US are living with SCD than with other genetic conditions, such as cystic fibrosis (~30,000 people) or hemophilia (~20,000 people), they have considerably less access to comprehensive coordinated care.5-7

While there are extensive networks of multidisciplinary specialty centers for both cystic fibrosis and hemophilia, there is no comparable national network of treatment centers for SCD.7


of people with SCD receive most of their care in the emergency room setting, which can lead to inefficient and suboptimal management of their chronic condition.8,9

Sickle cell anemia is the most common and typically most severe form of SCD in the US10


Genotype Prevalence >3 pain episodes Leg ulcers Hb g/dL LDH U/L
HbSS (sickle cell anemia) ~75% 31% 22% 8.6 437
HbSC ~18% 28% 9% 11.6 245
HbSβ+-thalassemia ~4% 26% 11% 11.1 245

HbSS = hemoglobin SS; HbSC = hemoglobin SC; HbSβ+-thalassemia = hemoglobin Sβ+-thalassemia; Hb = hemoglobin; LDH = lactate dehydrogenase

Sickle Cell Disease Resources

The National Heart, Lung, and Blood Institute

The National Heart, Lung, and Blood Institute has developed comprehensive, evidence-based guidelines for the diagnosis and management of sickle cell disease

American Society of Hematology

American Society of Hematology developed clinical practice guidelines on the management of sickle cell disease

Sickle Cell Disease Coalition

A library of useful links to sickle cell disease resources for providers

Sickle Cell Disease National Resource Directory

From the Centers for Disease Control and Prevention (CDC), this resource directory lists sickle cell disease national agencies, specialty care centers, and community-based organizations

Sickle Cell Information Center

Sponsored by the Emory School of Medicine, this online center highlights the latest clinical updates in sickle cell disease and webinars, as well as personal narratives from people impacted by SCD

References: 1. Centers for Disease Control and Prevention. Data & Statistics on Sickle Cell Disease. Updated October 21, 2019. Accessed November 12, 2019. 2. Lanzkron S, Carroll CP, Haywood C Jr. Mortality rates and age at death from sickle cell disease: US, 1979–2005. Public Health Rep. 2013;128(2):110-116. 3. Xu J, Murphy SL, Kochanek KD, Bastian B, Arias E. Deaths: final data for 2016. Natl Vital Stat Rep. 2018;67(5):1-76. 4. Centers for Disease Control and Prevention. Leading Cancer Cases and Deaths, Male and Female, 2015. United States Cancer Statistics: Data visualizations. Updated June 2018. Accessed April 30, 2019. 5. Cystic Fibrosis Foundation. About cystic fibrosis. What Is CF? website. Accessed May 3, 2019. 6. National Hemophilia Foundation. Fast facts. National Hemophilia Foundation website. Accessed May 6, 2019. 7. Grosse SD, Schechter MS, Kulkarni R, Lloyd-Puryear MA, Strickland B, Trevathan E. Models of comprehensive multidisciplinary care for individuals in the United States with genetic disorders. Pediatrics. 2009;123(1):407-412. 8. Commercial Overview. August 2018. Data on file, Global Blood Therapeutics. 9. Hemker BG, Brousseau DC, Yan K, Hoffmann RG, Panepinto JA. When children with sickle‐cell disease become adults: lack of outpatient care leads to increased use of the emergency department. Am J Hematol. 2011;86(10):863‐865. 10. National Heart, Lung, and Blood Institute. Evidence-Based Management of Sickle Cell Disease: Expert Panel Report, 2014. US Depart of Health and Human Services. Published September 2014. Accessed April 8, 2019. 11. Saraf SL, Molokie RE, Nouraie M, et al. Differences in the clinical and genotypic presentation of sickle cell disease around the world. Paediatr Respir Rev. 2014;15(1):4-12.

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