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 9/29/2019

HTC Population Profile Patient Characteristics, Factor VIII and Factor IX
Hemophilia A (Factor VIII deficiency) (n=19718) Hemophilia B (Factor IX deficiency) (n=6285)
Mild Moderate Severe Severity Unknown Mild Moderate Severe Severity Unknown
# (%) # (%) # (%) # (%) # (%) # (%) # (%) # (%)
# of patients 7377 (100) 3231 (100) 8760 (100) 350 (100) 2370 (100) 2227 (100) 1583 (100) 105 (100)
Age (years) <2 150 (2) 101 (3) 212 (2) 17 (5) 62 (3) 56 (3) 56 (4) * *
2-10 1142 (15) 579 (18) 1711 (20) 54 (15) 399 (17) 420 (19) 299 (19) 21 (20)
11-19 1640 (22) 715 (22) 1942 (22) 45 (13) 513 (22) 485 (22) 299 (19) 14 (13)
20-44 2480 (34) 1194 (37) 3783 (43) 155 (44) 775 (33) 728 (33) 632 (40) 34 (32)
45-64 1252 (17) 447 (14) 910 (10) 60 (17) 403 (17) 357 (16) 229 (14) 27 (26)
65+ 713 (10) 195 (6) 202 (2) 19 (5) 218 (9) 181 (8) 68 (4) * *
Sex Male 5459 (74) 3173 (98) 8720 (100) 145 (41) 1550 (65) 2207 (99) 1576 (100) 66 (63)
Female 1918 (26) 58 (2) 40 (0) 205 (59) 820 (35) 20 (1) 7 (0) 39 (37)
Ethnicity Hispanic, Latino/a, or Spanish origin 1394 (19) 659 (20) 1512 (17) 71 (20) 171 (7) 136 (6) 295 (19) 12 (11)
Not Hispanic, Latino/a, or Spanish origin 5858 (79) 2537 (79) 7177 (82) 257 (73) 2155 (91) 2077 (93) 1277 (81) 85 (81)
Unknown 125 (2) 35 (1) 71 (1) 22 (6) 44 (2) 14 (1) 11 (1) 8 (8)
Race American Indian/Alaska Native 109 (1) 43 (1) 72 (1) * * * * 27 (1) 14 (1) * *
Asian 191 (3) 118 (4) 441 (5) 18 (5) 37 (2) 30 (1) 82 (5) * *
Black or African American 433 (6) 443 (14) 1345 (15) 32 (9) 174 (7) 95 (4) 234 (15) 7 (7)
Native Hawaiian or other Pacific Islander 9 (0) 11 (0) 47 (1) * * * * 10 (0) 9 (1) * *
White 6293 (85) 2488 (77) 6531 (75) 257 (73) 2095 (88) 2040 (92) 1200 (76) 93 (89)
More than one of these 87 (1) 39 (1) 133 (2) * * 10 (0) 8 (0) 13 (1) * *
Unknown 255 (3) 89 (3) 191 (2) 34 (10) 48 (2) 17 (1) 31 (2) * *
Insurance Status Insured 7061 (96) 3109 (96) 8440 (96) 311 (89) 2021 (85) 1750 (79) 1532 (97) 83 (79)
Uninsured 226 (3) 92 (3) 231 (3) 24 (7) 298 (13) 461 (21) 40 (3) 14 (13)
Unknown 90 (1) 30 (1) 89 (1) 15 (4) 51 (2) 16 (1) 11 (1) 8 (8)
History of HCV infection Yes 882 (12) 685 (21) 2243 (26) 29 (8) 198 (8) 388 (17) 497 (31) 14 (13)
No 5554 (75) 2319 (72) 6041 (69) 213 (61) 1731 (73) 1573 (71) 985 (62) 58 (55)
Unknown 941 (13) 227 (7) 476 (5) 108 (31) 441 (19) 266 (12) 101 (6) 33 (31)
History of HIV infection Yes 113 (2) 183 (6) 914 (10) 13 (4) 23 (1) 46 (2) 129 (8) * *
No 6250 (85) 2794 (86) 7300 (83) 232 (66) 1886 (80) 1886 (85) 1338 (85) 64 (61)
Unknown 1014 (14) 254 (8) 546 (6) 105 (30) 461 (19) 295 (13) 116 (7) * *

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 52 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.