Factor VIII and Factor IX
Table 2. HTC Population Profile Patient Characteristics, Factor VIII and Factor IX, Data Reported from 1/1/2012 through 9/29/2021
| Hemophilia A (Factor VIII deficiency)(n=21844) | Hemophilia B (Factor IX deficiency)(n=7036) | ||||||||||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Factor level >=40% | Mild | Moderate | Severe | Severity Unknown |
Factor level >=40% | Mild | Moderate | Severe | Severity Unknown |
||||||||||||
| # | (%) | # | (%) | # | (%) | # | (%) | # | (%) | # | (%) | # | (%) | # | (%) | # | (%) | # | (%) | ||
| # of patients | 1507 | (100) | 7059 | (100) | 3493 | (100) | 9348 | (100) | 437 | (100) | 599 | (100) | 2180 | (100) | 2424 | (100) | 1715 | (100) | 118 | (100) | |
| Age (years) | <2 | 26 | (2) | 157 | (2) | 85 | (2) | 223 | (2) | 32 | (7) | 16 | (3) | 76 | (3) | 71 | (3) | 63 | (4) | * | * |
| 2-10 | 191 | (13) | 1070 | (15) | 607 | (17) | 1716 | (18) | 68 | (16) | 109 | (18) | 331 | (15) | 448 | (18) | 317 | (18) | 21 | (18) | |
| 11-19 | 330 | (22) | 1600 | (23) | 737 | (21) | 1971 | (21) | 59 | (14) | 109 | (18) | 466 | (21) | 522 | (22) | 308 | (18) | 16 | (14) | |
| 20-44 | 606 | (40) | 2294 | (32) | 1342 | (38) | 4188 | (45) | 177 | (41) | 259 | (43) | 684 | (31) | 782 | (32) | 689 | (40) | 37 | (31) | |
| 45-64 | 236 | (16) | 1182 | (17) | 492 | (14) | 1006 | (11) | 70 | (16) | 70 | (12) | 393 | (18) | 381 | (16) | 258 | (15) | 22 | (19) | |
| 65+ | 118 | (8) | 756 | (11) | 230 | (7) | 244 | (3) | 31 | (7) | 36 | (6) | 230 | (11) | 220 | (9) | 80 | (5) | * | * | |
| Sex† | Male | 250 | (17) | 5890 | (83) | 3431 | (98) | 9299 | (99) | 182 | (42) | 92 | (15) | 1653 | (76) | 2401 | (99) | 1709 | (100) | 66 | (56) |
| Female | 1257 | (83) | 1169 | (17) | 62 | (2) | 49 | (1) | 255 | (58) | 507 | (85) | 527 | (24) | 23 | (1) | 6 | (0) | 52 | (44) | |
| Ethnicity | Hispanic, Latino/a, or Spanish origin | 226 | (15) | 1420 | (20) | 743 | (21) | 1636 | (18) | 85 | (19) | 36 | (6) | 168 | (8) | 155 | (6) | 319 | (19) | 10 | (8) |
| Not Hispanic, Latino/a, or Spanish origin | 1222 | (81) | 5507 | (78) | 2704 | (77) | 7604 | (81) | 296 | (68) | 534 | (89) | 1966 | (90) | 2249 | (93) | 1372 | (80) | 92 | (78) | |
| Unknown | 59 | (4) | 132 | (2) | 46 | (1) | 108 | (1) | 56 | (13) | 29 | (5) | 46 | (2) | 20 | (1) | 24 | (1) | 16 | (14) | |
| Race | American Indian/Alaska Native | 40 | (3) | 91 | (1) | 47 | (1) | 79 | (1) | 7 | (2) | * | * | * | * | 29 | (1) | 17 | (1) | * | * |
| Asian | 32 | (2) | 205 | (3) | 130 | (4) | 498 | (5) | 19 | (4) | * | * | 34 | (2) | 35 | (1) | 85 | (5) | * | * | |
| Black or African American | 104 | (7) | 384 | (5) | 476 | (14) | 1440 | (15) | 40 | (9) | 30 | (5) | 170 | (8) | 101 | (4) | 252 | (15) | * | * | |
| Native Hawaiian or other Pacific Islander | * | * | 11 | (0) | 11 | (0) | 51 | (1) | * | * | * | * | * | * | 9 | (0) | 8 | (0) | * | * | |
| White | 1232 | (82) | 5966 | (85) | 2682 | (77) | 6868 | (73) | 292 | (67) | 523 | (87) | 1898 | (87) | 2199 | (91) | 1292 | (75) | 100 | (85) | |
| More than one of these | * | * | 105 | (1) | 39 | (1) | 147 | (2) | * | * | * | * | 10 | (0) | 15 | (1) | 18 | (1) | * | * | |
| Unknown | 83 | (6) | 297 | (4) | 108 | (3) | 265 | (3) | 72 | (16) | 33 | (6) | 58 | (3) | 36 | (1) | 43 | (3) | 10 | (8) | |
| Insurance Status | Insured | 1433 | (95) | 6738 | (95) | 3291 | (94) | 8906 | (95) | 365 | (84) | 448 | (75) | 1919 | (88) | 1891 | (78) | 1635 | (95) | 79 | (67) |
| Uninsured | 41 | (3) | 182 | (3) | 107 | (3) | 197 | (2) | 28 | (6) | 117 | (20) | 221 | (10) | 497 | (21) | 45 | (3) | 23 | (19) | |
| Unknown | 33 | (2) | 139 | (2) | 95 | (3) | 245 | (3) | 44 | (10) | 34 | (6) | 40 | (2) | 36 | (1) | 35 | (2) | 16 | (14) | |
| History of HCV infection | Yes | 46 | (3) | 890 | (13) | 716 | (20) | 2297 | (25) | 31 | (7) | 7 | (1) | 208 | (10) | 399 | (16) | 520 | (30) | 10 | (8) |
| No | 1141 | (76) | 5410 | (77) | 2559 | (73) | 6593 | (71) | 250 | (57) | 416 | (69) | 1667 | (76) | 1746 | (72) | 1091 | (64) | 65 | (55) | |
| Unknown | 320 | (21) | 759 | (11) | 218 | (6) | 458 | (5) | 156 | (36) | 176 | (29) | 305 | (14) | 279 | (12) | 104 | (6) | 43 | (36) | |
| History of HIV infection | Yes | 12 | (1) | 105 | (1) | 187 | (5) | 933 | (10) | 12 | (3) | * | * | 29 | (1) | 43 | (2) | 130 | (8) | * | * |
| No | 1181 | (78) | 6121 | (87) | 3060 | (88) | 7889 | (84) | 269 | (62) | 421 | (70) | 1828 | (84) | 2069 | (85) | 1463 | (85) | 70 | (59) | |
| Unknown | 314 | (21) | 833 | (12) | 246 | (7) | 526 | (6) | 156 | (36) | * | * | 323 | (15) | 312 | (13) | 122 | (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.
† On August 10, 2020, “intersex” was added as a response option. The number of intersex patients is too small to report by year or other characteristics; therefore, these counts have been excluded to protect patient confidentiality.
* Counts of five or fewer have been suppressed to protect patient confidentiality. Additional cells may be suppressed to prevent derivation of these counts by subtraction.