Orthopedics Hip, Knee, and Shoulder Injuries Forum - Financial concerns of monostotic fibrous dysplasia

A friend of my suffers from monostotic fibrous dysplasia in her right forearm (ulna), and she's told me that since she was 13, when the disease became very much noticeable, this bone has broken more times than she can remember. It's reached a point for her where the pain of breaking a bone is common place and nothing she fears. It's a chilling conversation anytime I hear her describe incidents such as lifting a heavy book bag only to find that she receives a forearm fracture.

Anyway, the point of my post is this: This disease is very rare, what I am trying to understand is the financial aspect of it. My friend has informed me that her health insurance is incredibly high so that she can undergo her 6 month bone infusion treatments along with receiving the necessary medication (bisphosphonates in various commercial brands). If she did not have health insurance, her bone infusion treatments would be somewhere nearing $10,000. $20,000/year to avoid the pain and suffering she goes through (and I assume you all must endure) seems unreasonable. Why is there no federal funding or grant provided to suffers of this disease; this seems like a self-evident case of the insurance companies working against the sufferer, the patient.

What's more unreasonable is that she is a college. Is she, and are you sufferers of this disease, actually expected to pay for being so randomly afflicted by this disease? I read that it is non-hereditary, and considering the rarity of the disease, it just doesn't seem right that you must not only suffer the physical pain of this disease but also the financial burden it bears just to avoid the pain it induces.

For example, she is in University, as said, but she has to make all of her life decisions based on how she will be able to financially cope with bearing this disease.

My main question is this: Is FD a financial burden to you (assuming you are not financially well off already), and if it is, how do you cope with it as an individual with only one source of income? Furthermore, she's under 20 years of age.