NIH: Rare diseases cost patients 3-5 times more than non-rare diseases

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Per-patient direct medical costs for rare diseases are about three to five times higher than for non-rare diseases, a recent study by the National Institutes of Health found.

In the pilot study, researchers quantified the direct medical costs of 14 rare diseases from four healthcare system databases and compared them to those of patients with non-rare diseases.

Here are five things to know about the cost of rare diseases:

1. An Eversana database found that from 2006 to 2020, per-patient per-year costs ranged from $8,812 to $140,044 for rare diseases, compared to $5,862 for non-rare diseases.

2. A National Center for Advancing Translational Sciences database found that from 2007 to 2012, per-patient per-year costs were $4,859 to $18,994 for rare diseases, compared to $2,211 for non-rare diseases.

3. Average costs per disease are estimated to be 1.5 to 23.9 times higher for rare diseases than non-rare diseases.

4. Gross extrapolation of average costs for about 25 million rare disease patients in the U.S. creates total yearly direct medical costs of about $400 billion a year, similar to diseases such as cancer and heart failure.

5. Total costs by rare diseases — found by multiplying the number of patients with each particular disease by the average disease costs within the time period — were lower than non-rare diseases. This is likely because of the smaller number of patients per disease.

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