NIH Record - National Institutes of Health

Researchers Identify High Costs of Living with SCD

Americans ages 64 and younger with commercial health insurance who live with sickle cell disease (SCD) pay almost quadruple the out-of-pocket medical costs over their lifetimes—a total of $44,000—as people living without the disease. And insurers pay $1.7 million on average for each person living with SCD, according to new NIH-supported research.

The health care spending analysis—published in Blood Advances—highlighted the financial toll that SCD—an inherited blood condition—has on patients, families and the health care system.

To calculate the lifetime out-of-pocket medical costs for people living with SCD, researchers analyzed commercial health insurance claims filed between 2007-2018 by 20,891 people living with SCD and compared those claims to those filed by 33,588 people of the same age and sex who did not have SCD.  

Researchers found that people living with SCD had more medical appointments, urgent care and emergency medical visits, and prescriptions as well as higher out-of-pocket medical costs, which averaged about $1,300 annually. 

SCD affects 100,000 people in the United States and millions worldwide. For more on this study, see: https://go.usa.gov/xJCjd

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Editor: Dana Talesnik
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Associate Editor: Patrick Smith
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Assistant Editor: Eric Bock
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Staff Writer: Amber Snyder
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