Factor VIII and Factor IX

Table 2. HTC Population Profile Patient Characteristics, Factor VIII and Factor IX Deficiencies, Data Reported From 1/1/2012 through 9/29/2020

HTC Population Profile Patient Characteristics, Factor VIII and Factor IX
Hemophilia A (Factor VIII deficiency)(n=20768) Hemophilia B (Factor IX deficiency)(n=6653)
Factor level >=40% Mild Moderate Severe Severity
Unknown
Factor level >=40% Mild Moderate Severe Severity
Unknown
# (%) # (%) # (%) # (%) # (%) # (%) # (%) # (%) # (%) # (%)
# of patients 1346 (100) 6616 (100) 3381 (100) 9038 (100) 387 (100) 533 (100) 2042 (100) 2315 (100) 1651 (100) 112 (100)
Age (years) <2 23 (2) 151 (2) 88 (3) 202 (2) 23 (6) 11 (2) 62 (3) 66 (3) 57 (3) * *
2-10 174 (13) 1003 (15) 606 (18) 1722 (19) 64 (17) 100 (19) 320 (16) 431 (19) 307 (19) 21 (19)
11-19 276 (21) 1494 (23) 718 (21) 1956 (22) 53 (14) 108 (20) 452 (22) 499 (22) 296 (18) 15 (13)
20-44 561 (42) 2156 (33) 1283 (38) 3998 (44) 161 (42) 223 (42) 629 (31) 752 (32) 670 (41) 36 (32)
45-64 211 (16) 1132 (17) 469 (14) 940 (10) 61 (16) 62 (12) 367 (18) 366 (16) 246 (15) 25 (22)
65+ 101 (8) 680 (10) 217 (6) 220 (2) 25 (6) 29 (5) 212 (10) 201 (9) 75 (5) * *
Sex Male 231 (17) 5559 (84) 3321 (98) 8994 (100) 161 (42) 81 (15) 1558 (76) 2295 (99) 1644 (100) 65 (58)
Female 1115 (83) 1057 (16) 60 (2) 44 (0) 226 (58) 452 (85) 484 (24) 20 (1) 7 (0) 47 (42)
Ethnicity Hispanic, Latino/a, or Spanish origin 189 (14) 1316 (20) 704 (21) 1565 (17) 82 (21) 30 (6) 157 (8) 145 (6) 314 (19) 11 (10)
Not Hispanic, Latino/a, or Spanish origin 1107 (82) 5191 (78) 2635 (78) 7386 (82) 267 (69) 478 (90) 1846 (90) 2153 (93) 1322 (80) 92 (82)
Unknown 50 (4) 109 (2) 42 (1) 87 (1) 38 (10) 25 (5) 39 (2) 17 (1) 15 (1) 9 (8)
Race American Indian/Alaska Native 35 (3) 84 (1) 46 (1) 74 (1) * * * * * * 28 (1) 17 (1) * *
Asian 26 (2) 192 (3) 124 (4) 466 (5) 19 (5) * * 32 (2) 32 (1) 83 (5) * *
Black or African American 96 (7) 365 (6) 462 (14) 1376 (15) 36 (9) 27 (5) 159 (8) 96 (4) 245 (15) 6 (5)
Native Hawaiian or other Pacific Islander * * 8 (0) 12 (0) 52 (1) * * * * * * 11 (0) 8 (0) * *
White 1108 (82) 5655 (85) 2607 (77) 6702 (74) 270 (70) 471 (88) 1785 (87) 2107 (91) 1249 (76) 99 (88)
More than one of these * * 86 (1) 36 (1) 140 (2) * * * * 9 (0) 13 (1) 14 (1) * *
Unknown 68 (5) 226 (3) 94 (3) 228 (3) 52 (13) 22 (4) 50 (2) 28 (1) 35 (2) * *
Insurance Status Insured 1278 (95) 6334 (96) 3222 (95) 8646 (96) 334 (86) 395 (74) 1782 (87) 1790 (77) 1586 (96) 82 (73)
Uninsured 38 (3) 181 (3) 99 (3) 221 (2) 25 (6) 108 (20) 225 (11) 495 (21) 43 (3) 15 (13)
Unknown 30 (2) 101 (2) 60 (2) 171 (2) 28 (7) 30 (6) 35 (2) 30 (1) 22 (1) 15 (13)
History of HCV infection Yes 45 (3) 869 (13) 707 (21) 2265 (25) 30 (8) * * 201 (10) 393 (17) 510 (31) 13 (12)
No 1012 (75) 5006 (76) 2453 (73) 6311 (70) 230 (59) 357 (67) 1541 (75) 1647 (71) 1038 (63) 56 (50)
Unknown 289 (21) 741 (11) 221 (7) 462 (5) 127 (33) * * 300 (15) 275 (12) 103 (6) 43 (38)
History of HIV infection Yes 9 (1) 106 (2) 184 (5) 928 (10) 12 (3) * * 27 (1) 44 (2) 132 (8) * *
No 1052 (78) 5703 (86) 2945 (87) 7579 (84) 250 (65) 361 (68) 1697 (83) 1963 (85) 1396 (85) 62 (55)
Unknown 285 (21) 807 (12) 252 (7) 531 (6) 125 (32) * * 318 (16) 308 (13) 123 (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 62 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.

* 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.