Understanding the Impact and Healthcare Costs of Rare Diseases

Rare diseases, though individually uncommon, collectively affect a significant portion of the population. In fact, it is estimated that in the United States alone, 25 to 30 million Americans suffer from rare diseases resulting in direct medical costs that are estimated to reach $449 billion.

To better understand the larger picture, ADVI Health’s Strategic Analytics, Values and Economics (SAVEs) team conducted research on the prevalence and healthcare utilization patterns of rare diseases among Medicare Fee-for-Service (FFS) beneficiaries in 2022. The findings unveiled a startling reality: a total of 379 rare diseases were identified within the Medicare FFS population, affecting approximately 3.5 million beneficiaries.

One of the most striking revelations from the study was the stark contrast in healthcare expenditures between Medicare beneficiaries with rare diseases and those without. On average, Medicare expenditure for beneficiaries diagnosed with rare diseases was found to be over three times higher than their counterparts with more common health conditions.

The high healthcare costs associated with rare diseases highlight the importance of continued research, advocacy, and policy efforts aimed at addressing the unique needs of this population. Initiatives focused on improving access to affordable treatments, expanding coverage options, and fostering innovation in rare disease research and drug development are essential to alleviate the financial burden faced by patients and their families.

The SAVEs team will continue to follow this issue and changes that may impact your business. If you are interested in additional analysis related to rare diseases please get in touch.

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Caitlin Sheetz, MPH
Senior Vice President and Head of Strategic Analytics, Value and Economics