What to know
Table 2
HTC Population Profile Patient Characteristics, Factor VIII and Factor IX Deficiencies, Data Reported from 1/1/2012 through 3/31/2024
Download the table as an Excel file.
| Hemophilia A (Factor VIII deficiency)(n=24508) | Hemophilia B (Factor IX deficiency)(n=7984) | ||||||||||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Factor level >=40% | Mild | Moderate | Severe | Severity Unknown |
Factor level >=40% | Mild | Moderate | Severe | Severity Unknown |
||||||||||||
| # | (%) | # | (%) | # | (%) | # | (%) | # | (%) | # | (%) | # | (%) | # | (%) | # | (%) | # | (%) | ||
| # of patients | 1934 | (100) | 8120 | (100) | 3815 | (100) | 10046 | (100) | 593 | (100) | 739 | (100) | 2529 | (100) | 2701 | (100) | 1839 | (100) | 176 | (100) | |
| Age (years) | <2 | 32 | (2) | 153 | (2) | 92 | (2) | 204 | (2) | 32 | (5) | 24 | (3) | 82 | (3) | 77 | (3) | 43 | (2) | 21 | (12) |
| 2–10 | 245 | (13) | 1142 | (14) | 601 | (16) | 1727 | (17) | 81 | (14) | 145 | (20) | 382 | (15) | 488 | (18) | 343 | (19) | 37 | (21) | |
| 11–19 | 420 | (22) | 1808 | (22) | 798 | (21) | 2003 | (20) | 71 | (12) | 121 | (16) | 531 | (21) | 530 | (20) | 327 | (18) | 20 | (11) | |
| 20–44 | 777 | (40) | 2697 | (33) | 1483 | (39) | 4648 | (46) | 275 | (46) | 315 | (43) | 793 | (31) | 927 | (34) | 741 | (40) | 57 | (32) | |
| 45–64 | 309 | (16) | 1358 | (17) | 549 | (14) | 1152 | (11) | 89 | (15) | 87 | (12) | 446 | (18) | 417 | (15) | 283 | (15) | 31 | (18) | |
| 65+ | 151 | (8) | 962 | (12) | 292 | (8) | 312 | (3) | 45 | (8) | 47 | (6) | 295 | (12) | 262 | (10) | 102 | (6) | 10 | (6) | |
| Sex† | Male | 313 | (16) | 6660 | (82) | 3747 | (98) | 9987 | (99) | 239 | (40) | 114 | (15) | 1884 | (74) | 2680 | (99) | 1831 | (100) | 77 | (44) |
| Female | 1621 | (84) | 1460 | (18) | 68 | (2) | 59 | (1) | 354 | (60) | 625 | (85) | 645 | (26) | 21 | (1) | 8 | (0) | 99 | (56) | |
| Ethnicity | Hispanic, Latino/a, or Spanish origin | 302 | (16) | 1693 | (21) | 849 | (22) | 1834 | (18) | 117 | (20) | 54 | (7) | 197 | (8) | 189 | (7) | 353 | (19) | 14 | (8) |
| Not Hispanic, Latino/a, or Spanish origin | 1564 | (81) | 6237 | (77) | 2909 | (76) | 8081 | (80) | 415 | (70) | 644 | (87) | 2274 | (90) | 2478 | (92) | 1469 | (80) | 140 | (80) | |
| Unknown | 68 | (4) | 190 | (2) | 57 | (1) | 131 | (1) | 61 | (10) | 41 | (6) | 58 | (2) | 34 | (1) | 17 | (1) | 22 | (13) | |
| Race | American Indian/Alaska Native | 44 | (2) | 96 | (1) | 50 | (1) | 84 | (1) | 7 | (1) | * | * | 10 | (0) | 31 | (1) | 16 | (1) | * | * |
| Asian | 45 | (2) | 242 | (3) | 149 | (4) | 548 | (5) | 26 | (4) | 14 | (2) | 52 | (2) | 44 | (2) | 92 | (5) | * | * | |
| Black or African American | 126 | (7) | 461 | (6) | 511 | (13) | 1535 | (15) | 59 | (10) | 32 | (4) | 191 | (8) | 115 | (4) | 264 | (14) | * | * | |
| Native Hawaiian or other Pacific Islander | 7 | (0) | 13 | (0) | 10 | (0) | 51 | (1) | * | * | * | * | * | * | 10 | (0) | 10 | (1) | * | * | |
| White | 1554 | (80) | 6724 | (83) | 2883 | (76) | 7319 | (73) | 405 | (68) | 641 | (87) | 2170 | (86) | 2425 | (90) | 1389 | (76) | 147 | (84) | |
| More than one of these | 26 | (1) | 130 | (2) | 45 | (1) | 162 | (2) | * | * | * | * | * | * | 20 | (1) | 22 | (1) | * | * | |
| Unknown | 132 | (7) | 454 | (6) | 167 | (4) | 347 | (3) | 87 | (15) | 44 | (6) | 83 | (3) | 56 | (2) | 46 | (3) | 15 | (9) | |
| Insurance Status | Insured | 1860 | (96) | 7825 | (96) | 3653 | (96) | 9674 | (96) | 528 | (89) | 583 | (79) | 2236 | (88) | 2084 | (77) | 1773 | (96) | 131 | (74) |
| Uninsured | 44 | (2) | 195 | (2) | 112 | (3) | 253 | (3) | 32 | (5) | 130 | (18) | 275 | (11) | 595 | (22) | 46 | (3) | 35 | (20) | |
| Unknown | 30 | (2) | 100 | (1) | 50 | (1) | 119 | (1) | 33 | (6) | 26 | (4) | 18 | (1) | 22 | (1) | 20 | (1) | 10 | (6) | |
| History of HCV infection | Yes | 48 | (2) | 932 | (11) | 737 | (19) | 2347 | (23) | 34 | (6) | 7 | (1) | 219 | (9) | 424 | (16) | 526 | (29) | 11 | (6) |
| No | 1531 | (79) | 6397 | (79) | 2836 | (74) | 7250 | (72) | 342 | (58) | 549 | (74) | 2007 | (79) | 2054 | (76) | 1211 | (66) | 88 | (50) | |
| Unknown | 355 | (18) | 791 | (10) | 242 | (6) | 449 | (4) | 217 | (37) | 183 | (25) | 303 | (12) | 223 | (8) | 102 | (6) | 77 | (44) | |
| History of HIV infection | Yes | 14 | (1) | 113 | (1) | 193 | (5) | 959 | (10) | 12 | (2) | * | * | 31 | (1) | 48 | (2) | 132 | (7) | * | * |
| No | 1569 | (81) | 7136 | (88) | 3349 | (88) | 8594 | (86) | 365 | (62) | 555 | (75) | 2175 | (86) | 2405 | (89) | 1580 | (86) | 93 | (53) | |
| Unknown | 351 | (18) | 871 | (11) | 273 | (7) | 493 | (5) | 216 | (36) | * | * | 323 | (13) | 248 | (9) | 127 | (7) | * | * | |
Note. Hemophilia severity is defined based on the level of factor activity circulating in the blood. In this table, “Factor level >=40%” is defined as greater than or equal to 40% baseline clotting factor activity; “mild” is defined as greater than 5% and less than 40% baseline clotting factor activity; “moderate” is defined as 1%–5% baseline clotting factor activity; “severe” is defined as less than 1% baseline clotting factor activity; and “severity unknown” is reported if the factor activity is missing or unknown. Males and females with factor VIII and IX deficiency are classified the same.
*Counts greater than zero but less than five have been suppressed to protect patient confidentiality. Additional cells may be suppressed to prevent derivation of these counts by subtraction.