Table 2.
Basic condition for the 8 rare diseases
| Obs. [n(1/106)] |
Medical cost | ||||||
|---|---|---|---|---|---|---|---|
| TTC (¥. RMB) |
INSURAPAY (¥. RMB) |
Rreimbursement (%) | |||||
| sample(incident rate) a | mean | medium | mean | medium | mean | medium | |
| Total | 7,747(65.8) | 5180.12 | 533.44 | 3279.93 | 334.28 | 67.1 | 72.1 |
| Disease type | |||||||
| Acute promyelocytic leukemia, APL | 660(5.6) | 12167.46 | 7322.63 | 7635.91 | 4616.91 | 63.2 | 67.5 |
| Growth hormone deficiency, GHD | 94(0.8) | 2419.08 | 1312.88 | 1352.71 | 965.82 | 54.7 | 60.6 |
| Hemophilia | 1,517(12.9) | 4957.53 | 1659.20 | 3408.02 | 876.16 | 64.8 | 71.0 |
| Motor neuron disease, MND | 958(8.1) | 10619.24 | 571.64 | 5744.06 | 350.09 | 71.3 | 78.4 |
| Mucopolysaccharidosis, MPS | 20(0.2) | 6858.53 | 6053.39 | 4635.00 | 4526.71 | 57.8 | 65.7 |
| Multiple sclerosis, MS | 775(6.6) | 5042.85 | 547.00 | 3449.75 | 383.09 | 69.5 | 72.1 |
| Myasthenia gravis, MG | 3,683(31.3) | 2744.99 | 312.29 | 1842.70 | 208.06 | 67.4 | 72.7 |
| Phenylketonuria, PKU | 40(0.3) | 587.55 | 20.00 | 425.44 | 20.00 | 69.1 | 65.5 |
Note: a) incident rate was the percentage of health service records with main diagnosis of rare disease in all the health service records in the database