Fig. 1: Estimated total charges for US health-care utilization of rare diseases (RDs) compared to common conditions (CCs).

RD patient cost burden was significantly higher than patients with common conditions (CCs) across all databases except Nationwide Emergency Department Sample (NEDS). (a) Estimated total charges for the Nationwide Inpatient Sample (NIS) were $768 billion (b) for RDs and $880 billion for CCs. Estimated total charges for RDs for Kids’ Inpatient Database (KID), Nationwide Readmissions Database (NRD), and NEDS were $105 billion, $337 billion, and $55 billion, respectively. Estimated total charges for CCs for KID, NRD, and NEDS were $70 billion, $385 billion, and $384 billion, respectively. All comparisons were p < 0.0001 and estimated total chargers are shown. (b) Estimated charges per discharge for RDs was higher than for CCs. Estimated average charge per discharge for NIS was $69,275 ± 1004 compared to $36,718 ± 389 for CCs (p < 0.0001). Estimated average charge per discharge for KID was $89,681 ± 289 for RDs compared to $14,226 ± 23 for CCs (p < 0.0001). Estimated average charge per discharge for NRD was $66,675 ± 98 for RDs compared to $35,585 ± 28 for CCs (p < 0.0001). Estimated average charge per discharge for NEDS was $4,670 ± 108 for RDs compared to $3,397 ± 76 for CCs (p < 0.0001). Mean cost per discharge shown with error bars indicating standard error. (c) Estimated inpatient length of stay (LOS) for RDs was longer in each Healthcare Cost and Utilization Project (HCUP) database evaluated (NIS, KID, NRD, NEDS) when compared to CCs. Estimated LOS for NIS was 6.3 days compared to 3.8 days for CCs (p < 0.0001). Estimated average charge per discharge for KID was 9.1 days compared to 2.8 days for CCs (p < 0.0001). Estimated average charge per discharge for NRD was 6.6 days compared to 3.9 days for CCs (p < 0.0001). Mean LOS is shown with error bars indicating standard error.