Factor VIII and Factor IX

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Table 2. HTC Population Profile Patient Characteristics, Factor VIII and Factor IX Deficiencies, Data Reported from 1/1/2012 through 9/29/2023

HTC Population Profile Patient Characteristics, Factor VIII and Factor IX
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 8/10/2020, the responses for this question changed such that “Male to Female” and “Female to Male” (i.e., 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.