Social and Financial Considerations

Financial Concerns

The costs associated with treatment of an inhibitor are quite high. Hemophilia replacement therapy is generally very expensive and therapy for inhibitor patients tends to be even more expensive. While many insurance companies cover these medical costs, a lot depends upon the treatment regimen, one’s insurance plan and the specific policies for coverage and reimbursement.  

It is critical for individuals and healthcare providers to discuss the costs associated with inhibitor treatment and provide appropriate referrals to supplemental programs and resources, if needed. If a person is being treated at a hospital, it is important to contact the department that oversees the financial issues associated with treatment. Often this is the finance or billing department. The people in these departments can often assist with determining if a treatment is covered by a person's insurance and to what degree. In many cases an insurance company will cover only a portion of a person's treatment.

At many hospitals and HTCs, there is a social worker or social work department that assists people in learning what is covered by their plan and what is the patient's responsibility. There can be a significant difference between reimbursement of treatment received in an inpatient hospital setting and an outpatient treatment facility.  Social workers can assist people in identifying in-state or other national resources to help defray some of the costs. Financial assistance may also available to people through their local city or county social service agencies.  However, the availability of assistance can vary by locality/state and is often associated with financial need and/or income level requirements.

Another option that may be worth exploring is "risk sharing." This is a program often setup by the manufacturers that produce the medications used to treat inhibitors that lower the costs associated with treatment for those with limited or no health insurance.

Social 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 requires frequent travel to a hospital or HTC.

As inhibitor development often occurs in children, the development of inhibitors has an early psychosocial and developmental 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. Obtaining guidance from physicians and other HTC professionals are essential.

Receiving support from other patients and families is instrumental in coping with the stress and anxiety associated with this treatment complication.

Copyright National Hemophilia Foundation

Last Updated January 2022