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 3/31/2023

HTC Population Profile Patient Characteristics, Factor VIII and Factor IX
Hemophilia A (Factor VIII deficiency)(n=23436) Hemophilia B (Factor IX deficiency) (n=7616)
Factor level >=40% Mild Moderate Severe Severity
Unknown
Factor level >=40% Mild Moderate Severe Severity
Unknown
# (%) # (%) # (%) # (%) # (%) # (%) # (%) # (%) # (%) # (%)
# of patients 1764 (100) 7667 (100) 3685 (100) 9738 (100) 582 (100) 687 (100) 2405 (100) 2582 (100) 1790 (100) 152 (100)
Age (years) <2 31 (2) 155 (2) 105 (3) 221 (2) 30 (5) 18 (3) 80 (3) 76 (3) 50 (3) 20 (13)
2–10 219 (12) 1102 (14) 607 (16) 1716 (18) 85 (15) 131 (19) 373 (16) 477 (18) 330 (18) 30 (20)
11–19 380 (22) 1739 (23) 761 (21) 1966 (20) 87 (15) 118 (17) 503 (21) 524 (20) 326 (18) 18 (12)
20–44 715 (41) 2527 (33) 1423 (39) 4461 (46) 261 (45) 301 (44) 746 (31) 865 (34) 711 (40) 53 (35)
45–64 285 (16) 1268 (17) 528 (14) 1091 (11) 85 (15) 79 (11) 434 (18) 395 (15) 278 (16) 25 (16)
65+ 134 (8) 876 (11) 261 (7) 283 (3) 34 (6) 40 (6) 269 (11) 245 (9) 95 (5) 6 (4)
Sex Male 283 (16) 6346 (83) 3615 (98) 9688 (99) 264 (45) 105 (15) 1798 (75) 2561 (99) 1782 (100) 80 (53)
Female 1481 (84) 1321 (17) 70 (2) 50 (1) 318 (55) 582 (85) 607 (25) 21 (1) 8 (0) 72 (47)
Ethnicity Hispanic, Latino/a, or Spanish origin 274 (16) 1567 (20) 799 (22) 1736 (18) 134 (23) 48 (7) 186 (8) 179 (7) 336 (19) 20 (13)
Not Hispanic, Latino/a, or Spanish origin 1429 (81) 5938 (77) 2840 (77) 7877 (81) 394 (68) 599 (87) 2164 (90) 2374 (92) 1435 (80) 110 (72)
Unknown 61 (3) 162 (2) 46 (1) 125 (1) 54 (9) 40 (6) 55 (2) 29 (1) 19 (1) 22 (14)
Race American Indian/Alaska Native 45 (3) 90 (1) 48 (1) 84 (1) * * * * 8 (0) 30 (1) 15 (1) * *
Asian 40 (2) 225 (3) 136 (4) 523 (5) 25 (4) 11 (2) 49 (2) 37 (1) 90 (5) * *
Black or African American 113 (6) 431 (6) 489 (13) 1489 (15) 52 (9) 31 (5) 184 (8) 107 (4) 260 (15) * *
Native Hawaiian or other Pacific Islander 6 (0) 14 (0) 11 (0) 52 (1) * * * * 6 (0) 9 (0) 9 (1) * *
White 1427 (81) 6402 (84) 2808 (76) 7105 (73) 411 (71) 596 (87) 2069 (86) 2333 (90) 1348 (75) 122 (80)
More than one of these 19 (1) 120 (2) 43 (1) 160 (2) 7 (1) * * 16 (1) 19 (1) 20 (1) * *
Unknown 114 (6) 385 (5) 150 (4) 325 (3) 80 (14) 43 (6) 73 (3) 47 (2) 48 (3) 17 (11)
Insurance Status Insured 1693 (96) 7349 (96) 3498 (95) 9312 (96) 514 (88) 537 (78) 2154 (90) 2026 (78) 1710 (96) 115 (76)
Uninsured 39 (2) 184 (2) 101 (3) 216 (2) 29 (5) 123 (18) 218 (9) 528 (20) 48 (3) 25 (16)
Unknown 32 (2) 134 (2) 86 (2) 210 (2) 39 (7) 27 (4) 33 (1) 28 (1) 32 (2) 12 (8)
History of HCV infection Yes 46 (3) 905 (12) 727 (20) 2326 (24) 35 (6) 6 (1) 214 (9) 408 (16) 524 (29) 10 (7)
No 1373 (78) 5970 (78) 2729 (74) 6952 (71) 352 (60) 504 (73) 1864 (78) 1905 (74) 1160 (65) 84 (55)
Unknown 345 (20) 792 (10) 229 (6) 460 (5) 195 (34) 177 (26) 327 (14) 269 (10) 106 (6) 58 (38)
History of HIV infection Yes 12 (1) 114 (1) 193 (5) 952 (10) 16 (3) * * 32 (1) 46 (2) 134 (7) * *
No 1415 (80) 6687 (87) 3234 (88) 8266 (85) 372 (64) 509 (74) 2021 (84) 2239 (87) 1532 (86) 89 (59)
Unknown 337 (19) 866 (11) 258 (7) 520 (5) 194 (33) * * 352 (15) 297 (12) 124 (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 41 transgender individuals. For confidentiality purposes, the number of transgender patients is too small to report by year or other characteristics. Transgender 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.

* 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.