Total lifetime medical expenses living with sickle cell anemia One study found that women and men under the age of 65 with private health insurance in the United States had a combined total of approximately $1.6 million (SCD) of approximately $1.7 million.
The researchers concluded that some of these costs — about four times what those without the disease would pay — were paid out of pocket by patients.
“Our findings suggest that patients with SCD have a lifetime out-of-pocket cost of approximately $44,000,” Dr. Kate Johnson, lead author of the study, said in an article. Press release“For these people, the annual out-of-pocket cost could be 5% to 10% of their annual income.”
Johnson works at the Institute for Comparative Health Outcomes, Policy and Economics (CHOICE) at the University of Washington’s School of Pharmacy, which conducted the study.
Patients with SCD are highly resource-intensive, but no studies have estimated medical costs paid by health insurers, or out-of-pocket costs incurred by patients over their lifetimes.
“Determining ways to reduce the burden of many SCD patients is a critical part of coordinated research,” Johnson said in Press release Published by the National Institutes of Health (NIH), which funded the research in part through its National Heart, Lung, and Blood Institute Cure for Sickle Cell Initiative.
To calculate the combined out-of-pocket lifetime medical costs for men and women with SCD, the researchers looked at health insurance claims filed between 2007 and 2018 by 20,891 people under the age of 65. The average age of enrolment was 25.7 years and 42% were male.
The researchers compared these claims to claims made by 33,588 people of roughly the same age and gender but without blood disorders.
They found that, compared with people without SCD, people with SCD made about 2.5 times more doctor visits, 4.6 times more emergency room visits, 1.2 times more emergency room visits, and 7.4 times more prescriptions per year.
They also incur out-of-pocket medical costs of about $1,300 a year, nearly four times the cost of an unaffected person (about $350).
The researchers also adjusted medical costs to average life expectancy. For people with SCD, the average life expectancy is 51.2 years for women and 50.5 years for men. For people without the disease, it was 62.3 years for women and 60.3 years for men.
Estimated total annual medical costs and costs attributable to SCD peaked between 13 and 24 years. Out-of-pocket medical expenses are relatively stable until age 40, and then begin to decline.
Over the lifetime, total medical costs attributable to SCD were $1.6 million for women and $1.7 million for men. Some of these costs ($42,395 for women and $45,091 for men) were paid out of pocket. Total lifetime medical costs for SCD patients were 907% higher than those without the disease, while out-of-pocket medical costs for patients were 285% higher than for controls.
“Although limited to the commercially insured population, these results suggest that the immediate financial burden of SCD is substantial and peaks at a young age, suggesting the need for therapeutic and new medical treatments,” the researchers wrote.
As some “very expensive but potentially curative” gene therapies enter clinical testing, “with projected prices approaching $2 million,” the findings provide a basis for assessing their true economic impact, they said.
“Hopefully these findings will spark some discussion around gene therapy pricing,” Johnson said. “While SCD is a rare disease, currently available treatments impose a significant financial burden on individuals and our entire healthcare system.”
The study did not consider potential indirect costs associated with SCD, such as lack of productivity due to inability to work, and was considered a limitation. It also doesn’t cover patients covered by public insurance plans, another notable limitation.
The research team leading the Cure Sickle Cell Economic Impact Consortium plans to gain a comprehensive understanding of the total costs associated with living with SCD.