By Shelby Smoak, Ph.D. & Justin Lindhorst, MBA

The bleeding disorders community has long endured health-system-related challenges. Attending college in the early 2000s, I secured my first private insurance policy offered to students attending the university. After attempting to order factor, I was contacted and told that my policy included exclusions for pre-existing conditions and that I’d have to wait a year before the plan would cover my medication.

After one grueling year of jumping through many hoops to maintain access to my life-saving medication, I finally placed my first factor order through my insurance company. Six months after that, I hit the “lifetime max” on the plan and was forced to find coverage elsewhere. Before the passage of the Affordable Care Act, lifetime caps and pre-existing condition exclusions were some of the primary health-system-related roadblocks experienced by members of the bleeding disorder community. Today step-therapy, copay accumulators, and high out-of-pocket costs threaten or delay our access to prescribed therapies. The fact is people with chronic health conditions such as hemophilia and VWD face a range of challenges navigating our fragmented healthcare system. Patient navigation programs can help.

References

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