Factor VII and Factor IX

Table 2. HTC Population Profile Patient Characteristics, Factor VIII and Factor IX Deficiencies, Data Reported From 1/1/2012 Through 9/29/2017

HTC Population Profile Patient Characteristics, Factor VIII and Factor IX
Hemophilia A (Factor VIII deficiency)(n=17100) Hemophilia B (Factor IX deficiency)(n=5379)
Mild Moderate Severe Severity Unknown Mild Moderate Severe Severity Unknown
# (%) # (%) # (%) # (%) # (%) # (%) # (%) # (%)
# of patients 5891 (100) 2913 (100) 8055 (100) 241 (100) 1898 (100) 1970 (100) 1452 (100) 59 (100)
Age (years) <2 116 (2) 85 (3) 214 (3) 15 (6) 48 (3) 45 (2) 53 (4) * *
2-10 999 (17) 580 (20) 1673 (21) 34 (14) 327 (17) 389 (20) 275 (19) 13 (22)
11-19 1342 (23) 651 (22) 1841 (23) 26 (11) 413 (22) 462 (23) 287 (20) 9 (15)
20-44 1893 (32) 1030 (35) 3341 (41) 114 (47) 620 (33) 614 (31) 576 (40) 21 (36)
45-64 1022 (17) 405 (14) 834 (10) 37 (15) 320 (17) 316 (16) 208 (14) 10 (17)
65+ 519 (9) 162 (6) 152 (2) 15 (6) 170 (9) 144 (7) 53 (4) * *
Sex Male 4597 (78) 2866 (98) 8025 (100) 129 (54) 1337 (70) 1952 (99) ** ** 43 (73)
Female 1294 (22) 47 (2) 30 (0) 112 (46) 561 (30) 18 (1) ** ** 16 (27)
Ethnicity Hispanic, Latino/a, or Spanish origin 1095 (19) 578 (20) 1360 (17) 51 (21) 138 (7) 127 (6) 263 (18) * *
Not Hispanic, Latino/a, or Spanish origin 4731 (80) 2315 (79) 6659 (83) 183 (76) 1730 (91) 1833 (93) 1182 (81) 48 (81)
Unknown 65 (1) 20 (1) 36 (0) 7 (3) 30 (2) 10 (1) 7 (0) * *
Race American Indian/Alaska Native 102 (2) 34 (1) 66 (1) * * * * 22 (1) 12 (1) * *
Asian 148 (3) 106 (4) 392 (5) 13 (5) 33 (2) 21 (1) 74 (5) * *
Black or African American 358 (6) 397 (14) 1255 (16) 24 (10) 158 (8) 77 (4) 211 (15) * *
Native Hawaiian or other Pacific Islander 7 (0) 12 (0) 49 (1) * * * * 13 (1) 11 (1) * *
White 5078 (86) 2267 (78) 6086 (76) 184 (76) 1666 (88) 1820 (92) 1110 (76) 53 (90)
More than one of these 61 (1) 32 (1) 106 (1) * * * * 6 (0) 17 (1) * *
Unknown 137 (2) 65 (2) 101 (1) 12 (5) 29 (2) 11 (1) 17 (1) * *
Insurance Status Insured 5656 (96) 2818 (97) 7790 (97) 214 (89) 1624 (86) 1561 (79) 1406 (97) 51 (86)
Uninsured 178 (3) 81 (3) 203 (3) 17 (7) 216 (11) 395 (20) 35 (2) * *
Unknown 57 (1) 14 (0) 62 (1) 10 (4) 58 (3) 14 (1) 11 (1) * *
History of HCV infection Yes 752 (13) 628 (22) 2126 (26) 25 (10) 182 (10) 351 (18) 467 (32) 6 (10)
No 4297 (73) 2048 (70) 5323 (66) 143 (59) 1340 (71) 1326 (67) 871 (60) 33 (56)
Unknown 842 (14) 237 (8) 606 (8) 73 (30) 376 (20) 293 (15) 114 (8) 20 (34)
History of HIV infection Yes 105 (2) 176 (6) 885 (11) 8 (3) 16 (1) 47 (2) 120 (8) * *
No 4861 (83) 2452 (84) 6481 (80) 162 (67) 1488 (78) 1591 (81) 1198 (83) 38 (64)
Unknown 925 (16) 285 (10) 689 (9) 71 (29) 394 (21) 332 (17) 134 (9) * *

Note. Hemophilia severity is defined based on the level of factor activity circulating in the blood. In this table, “mild” is defined as greater than 5% 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 baseline factor activity is missing or unknown. Males and females with factor VIII and IX deficiency are classified the same. Beginning with the September 2020 Report, data for persons with baseline factor activity >=40% are displayed separately from persons with greater than 5% and less than 40% activity.

† The HTC Population Profile contains 30 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.

** Greater than 99% of these patients are male.