Pevsner

Millions Suffer From Untreatable Rare Diseases While Medical Costs Skyrocket

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Lundi, décembre 12, 2022
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HERNDON, Va., Dec. 12, 2022 /PRNewswire-PRWeb/ -- The economic burden of rare diseases has been vastly underestimated. A retrospective study of medical and insurance records indicates medical costs for people with a rare disease are three to five times greater than for other medical conditions.(1) Additional studies identified inpatient care, longer lengths of stay, higher charges per admission, and high readmission charges as contributing to the disproportionate direct costs of $768 billion for rare disease patients compared to $880 billion for all other conditions combined.(2) IndoUSrare is a U.S.-based humanitarian nonprofit 501(c)(3) tax-exempt public charity organization dedicated to addressing the unmet needs of patients living with rare diseases around the world.

Key Points: 
  • Impacting about 30 million people in the United States alone, the direct and indirect medical costs of rare diseases approach $1 trillion annually.
  • Meanwhile, individuals living with rare diseases are often misdiagnosed, which prolongs their suffering as they are burdened personally and financially.
  • A retrospective study of medical and insurance records indicates medical costs for people with a rare disease are three to five times greater than for other medical conditions.
  • Still, the National Policy for Rare Diseases (NPRD) has identified three groups of rare diseases based on their treatability, treatment availability, and status.