379 rare diseases cost healthcare $966B per year: study

Katie Adams - Print  | 

The treatments for 379 rare diseases cost the U.S. economy nearly $966 billion in 2019, according to The National Economic Burden of Rare Disease Study.

To assess the total economic burden rare diseases produce in a single year, researchers analyzed claims data as well as indirect and non-medical costs for 1,399 Americans who live with rare diseases. They released the study results Feb. 25.

The research team found that in 2019, many of the leading costs components came from indirect costs associated with productivity lost, such as absenteeism ($149 billion), not being able to fully function in the workplace ($138 billion) and forced retirement ($136 billion). 

Inpatient and outpatient care were also significant contributors to rare diseases' total economic burden in 2019, costing $143 billion and $62 billion, respectively. Prescriptions and outpatient prescription administration also cost a combined $96 billion in 2019.

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