While only around 20,000 Americans have hemophilia, it represents an important driver of health care costs for employers. The disease requires a lifetime of intensive management and individualized care strategies. Hemophilia consistently ranks among the top-10 high cost claims conditions. Because of the low prevalence of hemophilia, employers (as a key payer group) have very limited knowledge of and experience with this genetic bleeding disorder.
Facts About Hemophilia
Hemophilia is caused by a missing or deficient protein called clotting factor. In the absence of this protein, blood cannot clot normally. The type of hemophilia a person has depends on the specific type of missing or deficient clotting factor. According to the Centers for Disease Control:
- Family history of hemophilia is present in almost two-thirds of cases
- Hemophilia occurs more commonly in men - 1 in every 5,000 male births
- Primary symptoms are excessive bleeding and easy bruising
- Bleeding can occur both externally and internally
- Internal bleeding, which often happens in the space around the joints (especially the knee, elbow, ankle) and in muscles, frequently causes pain and swelling and can lead to decreased mobility and disability
- Left untreated, bleeding can lead to permanent painful joint disease and sometimes death
Living with Hemophilia
Most people with hemophilia are diagnosed at a very young age. It is important for employers to be aware that this condition can impact employees who have it, as well as their spouses and/or children. Living with hemophilia as an adult or as a primary caregiver can present psychosocial, physical and financial challenges. These challenges affect everything from activities of daily living to treatment adherence and work productivity.
Most adults with hemophilia and caregivers of children with the condition report that managing hemophilia has a substantial impact on their lives, including:
- Hemophilia-related absences from work or school (e.g. due to emergencies, hospitalizations)
- Difficulty performing certain activities due to pain or mobility issues
- Difficulty concentrating due to bleeds or pain
- Fear and anxiety about accidental injuries
Currently there is no cure for hemophilia, but very effective treatments are available in the US, primarily involving acute care of bleeds when they occur (on-demand) and regular administration of clotting factor to prevent bleeds (prophylaxis).