Demographics and access to care
| . | Era A . | Era B . | Era C . | Era D . | ||||
|---|---|---|---|---|---|---|---|---|
| <1958 . | 1958-1975 . | 1976-1982 . | 1983-1992 . | |||||
| Severe . | Mild . | Severe . | Mild . | Severe . | Mild . | Severe . | Mild . | |
| Total number | 688 | 843 | 1542 | 787 | 1121 | 427 | 1548 | 530 |
| Hemophilia type (%) | ||||||||
| A (FVIII deficiency) | 78.8 | 74.7 | 82.2 | 75.1 | 87.2 | 80.1 | 85.3 | 80.2 |
| B (FIX deficiency) | 21.2 | 25.3 | 17.8 | 24.9 | 12.8 | 19.9 | 14.7 | 19.8 |
| Race/ethnicity (%) | ||||||||
| White (non-Hispanic) | 78.6 | 87.4 | 69.7 | 79.2 | 62.2 | 74 | 62.3 | 73.2 |
| African American (non-Hispanic) | 11.8 | 4.7 | 14.7 | 7.9 | 16.2 | 5.4 | 16.4 | 6.0 |
| Hispanic | 5.2 | 4.5 | 8.8 | 8.9 | 12.4 | 17.6 | 13.8 | 14.3 |
| Asian | 2.5 | 1.1 | 3.4 | 2.0 | 5.0 | 1.6 | 3.2 | 1.5 |
| Other | 1.9 | 2.2 | 3.3 | 2.0 | 4.3 | 1.4 | 4.3 | 4.9 |
| Access to care (%) | ||||||||
| Age at diagnosis: Birth | 2.2 | 0 | 2.3 | 1.4 | 3.2 | 1.9 | 2.6 | 1.1 |
| First HTC visit: ≤2 years old | 7.3 | 1.5 | 23.5 | 11.1 | 53.1 | 23.2 | 69.1 | 32.3 |
| HTC visits: Frequent | 84.2 | 56.2 | 82.8 | 55.4 | 79.2 | 54.1 | 82.9 | 62.4 |
| Treatment regimen: Prophylaxis | 15.8 | 0.2 | 20 | 1.8 | 27.6 | 1.2 | 45.4 | 1.3 |
| Treatment regimen: Home infusion | 70.3 | 25.6 | 76.1 | 32.4 | 74.2 | 34 | 73.9 | 25.8 |
| Start home infusion: <6 years old | 1.6 | 0.4 | 10.0 | 1.2 | 28.5 | 4.4 | 45.7 | 4.7 |
| Health insurance (%) | ||||||||
| Commercial | 36.5 | 52 | 43.2 | 67.3 | 48 | 61.8 | 51.9 | 68.5 |
| Medicaid | 9.2 | 4.6 | 16 | 8.6 | 23.6 | 10.8 | 24.2 | 12.1 |
| Medicare | 47.4 | 33.1 | 29.6 | 7.9 | 10.5 | 4.2 | 4.4 | 0.6 |
| Uninsured | 1.4 | 4.3 | 3.2 | 7.9 | 6.7 | 13.8 | 7.3 | 9.1 |
| . | Era A . | Era B . | Era C . | Era D . | ||||
|---|---|---|---|---|---|---|---|---|
| <1958 . | 1958-1975 . | 1976-1982 . | 1983-1992 . | |||||
| Severe . | Mild . | Severe . | Mild . | Severe . | Mild . | Severe . | Mild . | |
| Total number | 688 | 843 | 1542 | 787 | 1121 | 427 | 1548 | 530 |
| Hemophilia type (%) | ||||||||
| A (FVIII deficiency) | 78.8 | 74.7 | 82.2 | 75.1 | 87.2 | 80.1 | 85.3 | 80.2 |
| B (FIX deficiency) | 21.2 | 25.3 | 17.8 | 24.9 | 12.8 | 19.9 | 14.7 | 19.8 |
| Race/ethnicity (%) | ||||||||
| White (non-Hispanic) | 78.6 | 87.4 | 69.7 | 79.2 | 62.2 | 74 | 62.3 | 73.2 |
| African American (non-Hispanic) | 11.8 | 4.7 | 14.7 | 7.9 | 16.2 | 5.4 | 16.4 | 6.0 |
| Hispanic | 5.2 | 4.5 | 8.8 | 8.9 | 12.4 | 17.6 | 13.8 | 14.3 |
| Asian | 2.5 | 1.1 | 3.4 | 2.0 | 5.0 | 1.6 | 3.2 | 1.5 |
| Other | 1.9 | 2.2 | 3.3 | 2.0 | 4.3 | 1.4 | 4.3 | 4.9 |
| Access to care (%) | ||||||||
| Age at diagnosis: Birth | 2.2 | 0 | 2.3 | 1.4 | 3.2 | 1.9 | 2.6 | 1.1 |
| First HTC visit: ≤2 years old | 7.3 | 1.5 | 23.5 | 11.1 | 53.1 | 23.2 | 69.1 | 32.3 |
| HTC visits: Frequent | 84.2 | 56.2 | 82.8 | 55.4 | 79.2 | 54.1 | 82.9 | 62.4 |
| Treatment regimen: Prophylaxis | 15.8 | 0.2 | 20 | 1.8 | 27.6 | 1.2 | 45.4 | 1.3 |
| Treatment regimen: Home infusion | 70.3 | 25.6 | 76.1 | 32.4 | 74.2 | 34 | 73.9 | 25.8 |
| Start home infusion: <6 years old | 1.6 | 0.4 | 10.0 | 1.2 | 28.5 | 4.4 | 45.7 | 4.7 |
| Health insurance (%) | ||||||||
| Commercial | 36.5 | 52 | 43.2 | 67.3 | 48 | 61.8 | 51.9 | 68.5 |
| Medicaid | 9.2 | 4.6 | 16 | 8.6 | 23.6 | 10.8 | 24.2 | 12.1 |
| Medicare | 47.4 | 33.1 | 29.6 | 7.9 | 10.5 | 4.2 | 4.4 | 0.6 |
| Uninsured | 1.4 | 4.3 | 3.2 | 7.9 | 6.7 | 13.8 | 7.3 | 9.1 |