Western States Region IX Cost of Care
- Patients with hemophilia, like others with rare chronic conditions, require more frequent and intensive services from various medical disciplines than do average members of the public. Yet, reimbursement for hemophilia services is based on the experience of typical healthy citizens. Therefore, additional support is needed for special prevention, diagnostic, surveillance and treatment needs.
- State funding helps pay hemophilia care expenses for most people in California and Hawaii. Nevada funds a program for persons up to age 21.
- Clotting factor concentrate is very expensive (averaging $100,000 per year per adult patient), yet is necessary to prevent and treat damaging and life-threatening situations. Without it, life spans would be shortened and patients would be disabled.
Western States Region IX Standard of Care
The HTC model of care is multidisciplinary and integrates intensive patient and family education in its core philosophy. All of the HTCs provide diagnostic and treatment services in line with MCHB and CDC goals and National Hemophilia Foundation standards. HTCs are typically housed in university-based tertiary care hospitals, offering a full range of outpatient and inpatient services including case management and collaboration with primary care practitioners and other subspecialists. Because of the expertise of their medical directors, HTC care has expanded to other bleeding and, in two thirds of HTCs, clotting disorders.