Table 2.
Direct medical cost of rare diseases by age, insurance coverage, and type of service, in 2019
| Total excess medical cost due to RD | Per-person (2019 $) | ||
|---|---|---|---|
| (in Million $) | Percentage of the total (%) | ||
| Age | |||
| < 18 | 42,381 | 9.4 | 32,037 |
| 18–64 | 248,198 | 55.2 | 29,647 |
| ≥ 65 | 158,884 | 35.3 | 27,157 |
| Insurance | |||
| Medicaid | 43,621 | 9.7 | 27,573 |
| Commercial | 213,094 | 47.4 | 29,910 |
| Medicare | 192,747 | 42.9 | 28,185 |
| Type of service | |||
| Inpatient | 143,000 | 31.8 | 9199 |
| Prescription medication | 79,466 | 17.7 | 5112 |
| Outpatient | 62,032 | 13.8 | 3990 |
| Other ancillary | 48,974 | 10.9 | 3150 |
| Outpatient prescription administration | 47,567 | 10.6 | 3060 |
| Physician | 31,372 | 7.0 | 2018 |
| Non-acute inpatient | 30,759 | 6.8 | 1979 |
| Durable medical equipment | 4,401 | 1.0 | 283 |
| Caregiver | 1890 | 0.4 | 122 |
| Overall | 449,462 | 100 | 28,913 |
Source: RD prevalence calculated from claims data:2018 de-identified Normative Health Information (dNHI) claims, a large claims database for the privately insured, 2019 Medicare 5%, and 2016 Medicaid, combined with the 2019 Census population projections; direct medical cost estimates also based on three claims databases. Other ancillary services include telehealth, ambulance transportation via land, air or water, mobile unit services, etc.