Annual Out-of-Pocket Expenses for SCD Care Average $1,300

Each year, privately insured Americans with sickle cell disease (SCD) pay an average of $1,300 more in out-of-pocket medical expenses than people who do not have SCD, according to findings published in Blood Advances. The study also found that insurers pay an average of $1.7 million over time for each person with SCD.

To calculate the lifetime out-of-pocket medical costs, investigators from the University of Washington analyzed commercial health insurance claims filed between 2007-18 by 20,891 people with SCD aged younger than 65. They compared those claims with those filed by 33,588 people of the same age and sex who did not have SCD. Investigators then adjusted for average life expectancy: 51 for women with SCD, 50 for men with SCD, 62 for women without SCD, and 60 for men without SCD.

In addition to $44,000 more in lifetime out-of-pocket expenses, people with SCD had more medical appointments, more urgent care and emergency medical visits and more prescriptions than people who do not have SCD. Out-of-pocket costs peaked between the ages of 13-24 and declined with older age. According to the authors, this could be explained by patients having challenges identifying or connecting with SCD specialists and providers who understand their needs.

Notably, the analysis does not include people who are covered by public insurance plans, nor did it reflect indirect costs that can accumulate when receiving care for SCD for patients or caregivers. The authors believe that pairing these types of analyses with health care spending could provide a comprehensive lifetime cost of having SCD.  

The National Heart, Lung and Blood Institute (NHLBI) funded this research through the Cure Sickle Cell Disease Initiative, an NHLBI-led research partnership created to identify curative SCD therapies that could be used in clinical research studies between 2023-28.