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.
