Factor VIII and Factor IX

Table 2. HTC Population Profile Patient Characteristics, Factor VIII and Factor IX Deficiences, Data Reported from 1/1/2012 through 3/31/2022

HTC Population Profile Patient Characteristics, Factor VIII and Factor IX
Hemophilia A (Factor VIII deficiency)(n=22476) Hemophilia B (Factor IX deficiency)(n=7253)
Factor level >=40% Mild Moderate Severe Severity
Unknown
Factor level >=40% Mild Moderate Severe Severity
Unknown
# (%) # (%) # (%) # (%) # (%) # (%) # (%) # (%) # (%) # (%)
# of patients 1602 (100) 7310 (100) 3564 (100) 9505 (100) 495 (100) 629 (100) 2261 (100) 2477 (100) 1755 (100) 131 (100)
Age (years) <2 26 (2) 151 (2) 98 (3) 238 (3) 34 (7) 16 (3) 80 (4) 79 (3) 62 (4) 17 (13)
2–10 202 (13) 1098 (15) 608 (17) 1706 (18) 74 (15) 120 (19) 345 (15) 451 (18) 320 (18) 25 (19)
11–19 345 (22) 1641 (22) 746 (21) 1988 (21) 65 (13) 112 (18) 474 (21) 531 (21) 312 (18) 17 (13)
20–44 648 (40) 2403 (33) 1376 (39) 4279 (45) 213 (43) 275 (44) 710 (31) 801 (32) 712 (41) 41 (31)
45–64 254 (16) 1216 (17) 500 (14) 1041 (11) 72 (15) 73 (12) 407 (18) 386 (16) 263 (15) 24 (18)
65+ 127 (8) 801 (11) 236 (7) 253 (3) 37 (7) 33 (5) 245 (11) 229 (9) 86 (5) 7 (5)
Sex Male 255 (16) 6078 (83) 3503 (98) 9456 (99) 207 (42) 95 (15) 1706 (75) 2455 (99) 1749 (100) 68 (52)
Female 1347 (84) 1232 (17) 61 (2) 49 (1) 288 (58) 534 (85) 555 (25) 22 (1) 6 (0) 63 (48)
Ethnicity Hispanic, Latino/a, or Spanish origin 249 (16) 1487 (20) 765 (21) 1683 (18) 93 (19) 41 (7) 177 (8) 167 (7) 324 (18) 12 (9)
Not Hispanic, Latino/a, or Spanish origin 1294 (81) 5680 (78) 2745 (77) 7705 (81) 344 (69) 553 (88) 2035 (90) 2282 (92) 1410 (80) 98 (75)
Unknown 59 (4) 143 (2) 54 (2) 117 (1) 58 (12) 35 (6) 49 (2) 28 (1) 21 (1) 21 (16)
Race American Indian/Alaska Native 42 (3) 90 (1) 47 (1) 81 (1) 8 (2) * * * * 29 (1) 16 (1) * *
Asian 33 (2) 217 (3) 128 (4) 507 (5) 20 (4) 9 (1) 39 (2) 35 (1) 86 (5) * *
Black or African American 105 (7) 401 (5) 473 (13) 1468 (15) 48 (10) 32 (5) 177 (8) 106 (4) 254 (14) * *
Native Hawaiian or other Pacific Islander * * 12 (0) 11 (0) 52 (1) * * * * * * 8 (0) 9 (1) * *
White 1303 (81) 6146 (84) 2728 (77) 6953 (73) 331 (67) 546 (87) 1959 (87) 2238 (90) 1330 (76) 105 (80)
More than one of these * * 110 (2) 42 (1) 153 (2) * * * * 11 (0) 15 (1) 18 (1) * *
Unknown 97 (6) 334 (5) 135 (4) 291 (3) 79 (16) 37 (6) 65 (3) 46 (2) 42 (2) 15 (11)
Insurance Status Insured 1527 (95) 6972 (95) 3352 (94) 9024 (95) 418 (84) 473 (75) 1989 (88) 1947 (79) 1674 (95) 92 (70)
Uninsured 40 (2) 184 (3) 106 (3) 219 (2) 31 (6) 124 (20) 222 (10) 494 (20) 44 (3) 25 (19)
Unknown 35 (2) 154 (2) 106 (3) 262 (3) 46 (9) 32 (5) 50 (2) 36 (1) 37 (2) 14 (11)
History of HCV infection Yes 45 (3) 888 (12) 718 (20) 2313 (24) 31 (6) 7 (1) 208 (9) 404 (16) 528 (30) 9 (7)
No 1229 (77) 5644 (77) 2618 (73) 6729 (71) 285 (58) 449 (71) 1746 (77) 1805 (73) 1117 (64) 72 (55)
Unknown 328 (20) 778 (11) 228 (6) 463 (5) 179 (36) 173 (28) 307 (14) 268 (11) 110 (6) 50 (38)
History of HIV infection Yes 12 (1) 107 (1) 191 (5) 942 (10) 11 (2) * * 28 (1) 44 (2) 134 (8) * *
No 1271 (79) 6363 (87) 3120 (88) 8033 (85) 305 (62) 455 (72) 1901 (84) 2132 (86) 1490 (85) 77 (59)
Unknown 319 (20) 840 (11) 253 (7) 530 (6) 179 (36) * * 332 (15) 301 (12) 131 (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 47 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” (i.e., transsexual) and “Female to Male” 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 of five or fewer have been suppressed to protect patient confidentiality. Additional cells may be suppressed to prevent derivation of these counts by subtraction.