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National Economic Burden of Rare Disease Study

The National Economic Burden of Rare Disease Study report was released last month.

This study, conducted by the Lewin Group on behalf of the EveryLife Foundation for Rare Diseases, is the first of its kind, providing the most comprehensive assessment of the total economic burden of 379 rare diseases in a single year. This study identified direct medical costs, via an analysis of claims data, and indirect costs associated with productivity loss and non-medical and other uncovered healthcare costs, via a survey of 1,399 members of the rare disease community.

The study found that the total economic burden of 379 rare diseases was nearly $1 trillion in the United States in 2019, exceeding estimates for many of the country’s most prevalent chronic diseases.

One of the study’s most compelling findings is that excess direct medical costs associated with a rare disease diagnosis are not the largest cost-driving category. Indirect costs associated with productivity loss are the largest cost driver, coming in at $437 billion dollars and representing 45% of total costs. The third cost category assessed, non-medical and uncovered healthcare costs, came in at $111 billion. These two cost categories are particularly significant to the rare disease community because these are the cost categories that have never before been quantified and yet represent the costs that fall directly on patients and families.

The report estimates that 15.5 million individuals in the U.S. have any of the 379 rare diseases included in the study. These numbers underscore both the massive public health crisis of rare diseases, and the need for additional research and funding. By funding research, improving awareness and diagnosis, and supporting legislation, we can begin to relieve the massive economic, medical, and personal burden of rare diseases.

The EveryLife Foundation for Rare Diseases is encouraging each of us to contact elected representatives, share the study findings, and urge Congress to support important rare disease appropriations that would advance critical rare disease research and therapy development at the National Institutes of Health, the Centers for Disease Control and Prevention, and the Food and Drug Administration.

The full study report can be found at www.burdenstudy.org.

The National Economic Burden Of Rare Disease Study Infographic

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