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Rare Disease Healthcare Spending Tops Costly Chronic Diseases


The survey on which this study was founded received responses from nearly 1,400 individuals regarding costs related to 379 rare diseases in 2019.

“This primary survey was specifically designed and administered for this study to deepen the understanding of the full spectrum of rare disease (RD) impact,” the study explained.

“The survey was able to collect detailed data on a broad set of indirect and non-medical costs of RD that were previously unavailable, especially the impact of RD on unpaid caregivers. This survey was one of the largest surveys conducted so far covering multiple RD communities.”

These diseases impacted 15.5 million people and cost $966 billion. This number exceeds even chronic disease cost estimates including the most expensive chronic diseases driving healthcare spending in the US such as diabetes, cancer, and heart disease.

“Notably, these studies are not easily comparable to ours, as they are based on different data, or include various burden components,” the researchers qualified.

“Therefore, any comparison between the findings of this new study and any previous literature should consider these differences.”Of that $966 billion total, […]

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