Hemophilia became the model for a more effective approach to treating inherited chronic diseases. In 1975, the federal government began funding Hemophilia Treatment Centers (HTCs) to provide comprehensive care with the goal of treating the whole person. To expand this effort in West Virginia, the 1981 Legislature established the State Hemophilia Program.
Hemophilia Treatment Centers help individuals and families manage bleeding disorders and their complications. Usual services include:
- Joint damage and function evaluation
- Physical therapy programs to build or regain muscle strength
- Dental examinations and treatments
- Psychological/emotional counseling
- Genetic counseling
- Home infusion training
- Financial guidance and insurance advocacy
These services are organized into regularly scheduled clinics during which needed treatment can be obtained in one visit. Most persons make at least one comprehensive care visit to their HTC each year. The clinic’s core team members—hematologist, nurse coordinator, social worker and physical therapist—meet with other participating health care specialists to draw up a treatment plan and present it to the patient for agreement. The Nurse Coordinator works closest with the patient to arrange individualized follow-up treatment, factor, or other requested information.
Most HTCs have school visit programs for teachers and other staff members. Many Centers participate in summer camps for affected children and, often, their siblings.