What to know
This table shows data on general patient demographics and clinical characteristics for people with hemophilia A (factor VIII) and B (factor IX). To view this table in Excel, download the file at the top of this page.
Table 2
HTC Population Profile Patient Characteristics, Factor VIII and Factor IX Deficiencies, Data Reported from 1/1/2012 through 9/29/2023
Download the table as an Excel file.
| Hemophilia A (Factor VIII deficiency)(n=23867) | Hemophilia B (Factor IX deficiency) (n=7762) | ||||||||||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Factor level >=40% | Mild | Moderate | Severe | Severity Unknown |
Factor level >=40% | Mild | Moderate | Severe | Severity Unknown |
||||||||||||
| # | (%) | # | (%) | # | (%) | # | (%) | # | (%) | # | (%) | # | (%) | # | (%) | # | (%) | # | (%) | ||
| # of patients | 1818 | (100) | 7845 | (100) | 3738 | (100) | 9887 | (100) | 579 | (100) | 701 | (100) | 2446 | (100) | 2649 | (100) | 1801 | (100) | 165 | (100) | |
| Age (years) | <2 | 30 | (2) | 147 | (2) | 97 | (3) | 214 | (2) | 30 | (5) | 20 | (3) | 77 | (3) | 74 | (3) | 46 | (3) | 19 | (12) |
| 2–10 | 226 | (12) | 1117 | (14) | 598 | (16) | 1695 | (17) | 86 | (15) | 135 | (19) | 366 | (15) | 485 | (18) | 330 | (18) | 35 | (21) | |
| 11–19 | 389 | (21) | 1754 | (22) | 781 | (21) | 2009 | (20) | 79 | (14) | 115 | (16) | 515 | (21) | 543 | (20) | 326 | (18) | 19 | (12) | |
| 20–44 | 738 | (41) | 2606 | (33) | 1451 | (39) | 4553 | (46) | 262 | (45) | 305 | (44) | 765 | (31) | 892 | (34) | 719 | (40) | 56 | (34) | |
| 45–64 | 294 | (16) | 1307 | (17) | 540 | (14) | 1118 | (11) | 85 | (15) | 82 | (12) | 443 | (18) | 404 | (15) | 280 | (16) | 29 | (18) | |
| 65+ | 141 | (8) | 914 | (12) | 271 | (7) | 298 | (3) | 37 | (6) | 44 | (6) | 280 | (11) | 251 | (9) | 100 | (6) | 7 | (4) | |
| Sex† | Male | 292 | (16) | 6467 | (82) | 3666 | (98) | 9835 | (99) | 244 | (42) | 105 | (15) | 1824 | (75) | 2628 | (99) | 1794 | (100) | 79 | (48) |
| Female | 1526 | (84) | 1378 | (18) | 72 | (2) | 52 | (1) | 335 | (58) | 596 | (85) | 622 | (25) | 21 | (1) | 7 | (0) | 86 | (52) | |
| Ethnicity | Hispanic, Latino/a, or Spanish origin | 282 | (16) | 1619 | (21) | 823 | (22) | 1786 | (18) | 114 | (20) | 48 | (7) | 190 | (8) | 183 | (7) | 344 | (19) | 17 | (10) |
| Not Hispanic, Latino/a, or Spanish origin | 1472 | (81) | 6057 | (77) | 2860 | (77) | 7975 | (81) | 406 | (70) | 616 | (88) | 2202 | (90) | 2436 | (92) | 1438 | (80) | 128 | (78) | |
| Unknown | 65 | (3) | 169 | (2) | 55 | (1) | 126 | (1) | 59 | (10) | 37 | (5) | 54 | (2) | 30 | (1) | 19 | (1) | 20 | (12) | |
| Race | American Indian/Alaska Native | 45 | (2) | 91 | (1) | 50 | (1) | 81 | (1) | * | * | * | * | 8 | (0) | 30 | (1) | 15 | (1) | * | * |
| Asian | 40 | (2) | 228 | (3) | 143 | (4) | 535 | (5) | 25 | (4) | 12 | (2) | 50 | (2) | 41 | (2) | 89 | (5) | * | * | |
| Black or African American | 113 | (6) | 451 | (6) | 494 | (13) | 1509 | (15) | 54 | (9) | 31 | (4) | 188 | (8) | 110 | (4) | 261 | (14) | * | * | |
| Native Hawaiian or other Pacific Islander | 6 | (0) | 14 | (0) | 11 | (0) | 52 | (1) | * | * | * | * | 6 | (0) | 10 | (0) | 9 | (0) | * | * | |
| White | 1472 | (81) | 6528 | (83) | 2843 | (76) | 7208 | (73) | 399 | (69) | 611 | (87) | 2101 | (86) | 2385 | (90) | 1360 | (76) | 138 | (84) | |
| More than one of these | 21 | (1) | 124 | (2) | 43 | (1) | 160 | (2) | 9 | (2) | * | * | 15 | (1) | 20 | (1) | 22 | (1) | * | * | |
| Unknown | 121 | (7) | 409 | (5) | 154 | (4) | 342 | (3) | 84 | (15) | 41 | (6) | 78 | (3) | 53 | (2) | 45 | (2) | 15 | (9) | |
| Insurance Status | Insured | 1742 | (96) | 7538 | (96) | 3565 | (95) | 9484 | (96) | 516 | (89) | 551 | (79) | 2196 | (90) | 2057 | (78) | 1727 | (96) | 126 | (76) |
| Uninsured | 45 | (2) | 186 | (2) | 103 | (3) | 239 | (2) | 27 | (5) | 124 | (18) | 224 | (9) | 567 | (21) | 47 | (3) | 30 | (18) | |
| Unknown | 31 | (2) | 121 | (2) | 70 | (2) | 164 | (2) | 36 | (6) | 26 | (4) | 26 | (1) | 25 | (1) | 27 | (1) | 9 | (5) | |
| History of HCV infection | Yes | 49 | (3) | 925 | (12) | 734 | (20) | 2336 | (24) | 32 | (6) | 6 | (1) | 220 | (9) | 412 | (16) | 524 | (29) | 12 | (7) |
| No | 1419 | (78) | 6120 | (78) | 2779 | (74) | 7110 | (72) | 342 | (59) | 515 | (73) | 1900 | (78) | 1965 | (74) | 1169 | (65) | 88 | (53) | |
| Unknown | 350 | (19) | 800 | (10) | 225 | (6) | 441 | (4) | 205 | (35) | 180 | (26) | 326 | (13) | 272 | (10) | 108 | (6) | 65 | (39) | |
| History of HIV infection | Yes | 13 | (1) | 114 | (1) | 193 | (5) | 961 | (10) | 13 | (2) | * | * | 33 | (1) | 47 | (2) | 131 | (7) | * | * |
| No | 1462 | (80) | 6859 | (87) | 3292 | (88) | 8435 | (85) | 362 | (63) | 520 | (74) | 2064 | (84) | 2304 | (87) | 1543 | (86) | 93 | (56) | |
| Unknown | 343 | (19) | 872 | (11) | 253 | (7) | 491 | (5) | 204 | (35) | * | * | 349 | (14) | 298 | (11) | 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.
†The HTC Population Profile contains 39 transsexual individuals. For confidentiality purposes, the number of transsexual patients is too small to report by year or other characteristics. Transsexual patients have been included in the counts of male and female according to the sex assigned to them at birth since hemophilia and von Willebrand disease, the most common congenital bleeding disorders, affect the sexes differently. On August 10, 2020, the responses for this question changed such that "Male to Female" and "Female to Male" (that is, transsexual) were removed and "Intersex" was added. 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 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.