Living with Sickle Cell Disease is Ridiculously Expensive, Out-Of-Pocket Costs Hit More Than $44,000

A new healthcare study shows that American citizens aged 64 and younger who have sickle cell disease or SCD pay out-of-pocket health bills by approximately four times the original costs throughout their lifetimes.

These people, who all have commercial health insurance coverage, were discovered to pay $44,000 compared to individuals who do not have SCD. Moreover, the insurers also spend at least $1.7 million on a person living with the disease, the research found.

The insights into the healthcare status of patients with this particular disease highlight how people spend more than they should for treatments and the financial toll they incur from the present setup of healthcare systems that cater to victims of the illness.

Sickle cell disease is a blood condition that is commonly inherited, being passed on between parents and offspring from one generation to another.

High Cost of Living with Sickle Cell Disease

Living with Sickle Cell Disease is Ridiculously Expensive, Study Shows

(Photo: Karolina Grabowska)

University of Washington's Economics Institute specialist and author of the study, Kate Johnson, explained in a report by the National Institutes of Health that their research aims to specify the solutions to reduce the burden of patients affected by SCD in terms of healthcare.

The team hopes that the findings collected from the analysis could back up larger studies that look for cures for sickle cell disease, Johnson continued.

Experts calculated the average expenditures of SCD patients through the healthcare insurance claim data consolidated from 2007 to 2018. The claims were from over 20,800 individuals that ranged from 64 years old and younger.

The healthcare information of this group, who were all diagnosed with the illness, compared to a separate cluster of more than 33,500 of the same ages and gender that did not have SCD.

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The average age of the SCD patients is 25 years, and lifetime expectancy at 50 and 51 years for men and women, respectively. In the group without SCD, the average life expectancy recorded was 69 and 62 for men and women, respectively. According to the Centers for Disease Control and Prevention, American citizens have a collective lifetime expectancy of 77 years.

Out-of-Pocket Costs of SCD Patients

It was observed that people who had SCD had more frequent medical appointments, needed more urgent care, and required more prescriptions and emergency visits compared to the group who did not have SCD.

The most striking discovery is that SCD patients had to pay higher medical costs directly out of their own pockets averaging $1,300 per year compared to non-patients.

The out-of-pocket costs peaked when the patients aged 13 to 24 years. People with SCD transition from pediatric to adult types of medical care during this age, causing more visits to facilities.

According to the authors, this increase is induced by other challenges such as identifying or reaching for SCS specialists and even for healthcare providers that cater to their specific needs.

The paper also revealed that many SCD patients experience stigma when seeking assistance. For example, institutional racism leads many to switch providers, which disrupts their plans and process for obtaining proper care.

The study was published in the journal Blood Advances, titled "Lifetime medical costs attributable to sickle cell disease among nonelderly individuals with commercial insurance."