Social & Emotional Concerns
Both the patient and the family face many challenges with inhibitors. The ongoing financial and emotional struggles associated with hemophilia are intensified for patients with inhibitors and their families. Living at a distance from expert care may also impact personal and familial issues. Many families find themselves living in areas where therapy options require travel or are not available at all.
As inhibitor development often occurs in children, the development of inhibitors often has a psychosocial impact. Adolescence is marked by independence and risk-taking activities, which often creates a dynamic that can be a challenge regarding medical compliance with prescribed therapy. Support from physicians and other professionals are essential.
Financially, the treatment costs associated with inhibitors are high. Hemophilia replacement therapy is very expensive and infusion therapy for inhibitor patients tends to be more expensive. While many insurance companies cover the medical costs, caps can be reached quickly requiring the use of alternative insurance plans and public programs. It is critical for healthcare providers to discuss the cost of treatment with patients and their families and provide appropriate referrals to alternative programs and resources. Hospital social workers and other agencies can also help procure alternative methods of payment.