Lifetime medical costs of sickle cell disease total $1.7 million
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Privately insured individuals with sickle cell disease spend about $1.7 million on disease-related medical expenses during their lifetime, according to study results published in Blood Advances.
Rationale and methods
“This is part of a larger project — Cure Sickle Cell Initiative, funded by National Heart, Lung, and Blood Institute — where we developed an economic model to evaluate potential curative therapies,” Kate Johnson, PhD, assistant professor in the division of respiratory medicine and the department of medicine at The University of British Columbia in Vancouver, told Healio. “We specifically sought to quantify the lifetime medical costs associated with sickle cell disease from a commercial payer perspective to give us an idea of the true economic burden of sickle cell disease both on health insurers, as well as on patients. Down the road, we also hope to provide key inputs for our economic model and assess the potential value of curative therapies to reduce costs.”
Investigators gathered data from a retrospective cohort of 20,891 patients with sickle cell disease (mean age, 25.7 years; 58% female) included in a commercial claims database between 2007 and 2018. They assessed outpatient and inpatient medical claims, prescription drug claims, health utilization records, payer and individual costs, demographics and insurance plans. Investigators then compared patients with sickle cell disease with 33,588 matched controls without sickle cell disease.
Key findings
Results showed lifetime out-of-pocket medical costs attributed to sickle cell disease of approximately $1.6 million for women and $1.7 million for men, with corresponding out-of-pocket estimates of $42,395 and $45,091.
Researchers found a 907% increase in total medical costs for patients with sickle cell disease compared with controls and an increase in out-of-pocket costs of 285% above controls.
“These findings are the most recent and current estimate of the lifetime burden of medical costs. From a commercial health care payer and patient perspective, there is a massive economic burden of sickle cell disease,” Johnson said. “It is important to keep in mind that these are direct medical costs and do not include the indirect economic burden of sickle cell disease. There is great potential for curative therapies both to improve the lives of patients with sickle cell disease and to reduce the economic burden.”
Implications
Future research interests include the evaluation and pricing of novel therapies on the horizon, according to Johnson.
“The next steps of this project are being carried out by other members of our team, including the development of economic models to evaluate the cost-effectiveness value of curative therapies,” she said. “These figures have been used as inputs into that model. Evaluating curative therapies and pricing those therapies are the next steps and broader implications of this research.”
References:
- Johnson KM, et al. Blood Adv. 2022;doi:10.1182/bloodadvances.2021006281.
- The cost of living with sickle cell disease (press release). Available at: www.hematology.org/newsroom/press-releases/2022/the-cost-of-living-with-sickle-cell-disease. Published May 16, 2022. Accessed June 23, 2022.
For more information:
Kate Johnson, PhD, can be reached at kate.johnson@ubc.ca.
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