SCD Patients’ Lifetime Medical Costs Come to $1.7M, Partly Out of Pocket

The total lifetime medical costs of living with sickle cell disease (SCD) total about $1.6 million for women and $1.7 million for men younger than 65 who hold private health insurance in the U.S., a study found.

Researchers concluded that some of these expenses — which are roughly four times higher than those paid by people without the disease — are paid out-of-pocket by patients.

“Our findings suggest that the lifetime out-of-pocket cost of medical care is about $44,000 for people with SCD,” Kate Johnson, PhD, the study’s first author, said in a press release. “For this population, the annual out-of-pocket cost burden could be five to 10% of their annual income.”

Johnson works at the Comparative Health Outcomes, Policy & Economics (CHOICE) Institute at University of Washington School of Pharmacy, where the research was conducted.

The study, “Lifetime medical costs attributable to sickle cell disease among nonelderly individuals with commercial insurance,” was published in Blood Advances.

People with SCD make high use of medical resources, but there have been no studies to estimate the medical costs paid by health insurers, or out-of-pocket costs sustained by patients over a lifetime.

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“Identifying ways to reduce the burden many people living with SCD face is a critical part of coordinated research,” Johnson said in a press release issued by the National Institutes of Health (NIH), which funded the study in part through its National Heart, Lung and Blood Institute, Cure Sickle Cell Initiative.

To calculate the total and out-of-pocket lifetime medical costs for men and women living with SCD, researchers looked at health insurance claims filed at any point between 2007 and 2018 by 20,891 people younger than 65. The mean age at enrollment was 25.7 years, 42% were men.

Researchers compared those claims to the ones filed by 33,588 people of about the same age and sex who did not have a blood disorder.

They found that per year, those with SCD had about 2.5 times more medical appointments, 4.6 times more urgent care visits, 1.2 times more emergency room visits, and filled 7.4 times more prescriptions than those without the disease.

They also had out-of-pocket medical costs amounting to about $1,300 per year, which was almost four times as high as the costs for those without the disease (about $350).

Researchers also adjusted the medical costs to mean life expectancy. For people living with SCD, the average life expectancy was 51.2 years for women and 50.5 years for men. For those without the disease, it was 62.3 years for women, 60.3 years for men.

The estimated total medical costs per year, as well as those attributed to SCD, peaked between 13 and 24 years. Out-of-pocket medical costs were relatively stable until age 40 and started to decline thereafter.

Over a lifetime, the total medical costs attributable to SCD were $1.6 million for women and $1.7 million for men. Part of these costs ($42,395 for women, $45,091 for men) were paid out of pocket. Lifetime total medical costs were 907% higher for SCD patients relative to people without the disease, while out-of-pocket medical costs were 285% higher for patients than for controls.

“Although limited to the commercially insured population, these results indicate that the direct economic burden of SCD is substantial and peaks at younger ages, suggesting the need for curative and new medical therapies,” the researchers wrote.

As a number of “very costly but potentially curative” gene therapies enter into clinical testing, with “expected prices of nearly $2 million,” these findings provide a ground for evaluating their true economic impact, they said.

“Hopefully, these findings will trigger some conversation around the pricing of gene therapies,” Johnson said. “While SCD is a rare disease, the current treatments available are placing a substantial economic burden on individuals and our entire health care system.”

The study did not account for potential indirect costs associated with SCD, such as lack of productivity due to being unable to work, and is noted as a limitation. It also did not include patients covered by public insurance plans, another noted limitation.

Research teams leading the Cure Sickle Cell Economic Impact Consortium plan to develop a comprehensive picture of the total costs associated with living with SCD.