My cancer journey began nine months ago when I decided that despite a previous doctor's dismissal, the persistent lump in my neck was not just a swollen lymph node. Since then, I've traveled down this path alternately fearful, uncertain, brave, curious, angry, in pain, nauseous, grateful and--over the past month--investigational. This last term was a gift from my insurance company, intended to describe the treatment my doctors prescribed rather than me directly. But throughout my battle with Anthem, it has permeated my experience. My tumor was very rare, and it had a tiny, tiny chance of being malignant. When the pathology report came back and I had to make some tough decisions, I realized that statistics were not going to save me. Anthem, however, did not want to pay for anything not backed by solid statistics. Refusing to fall through their cracks, I turned the term "investigational" back on them and asked: "What isn't investigational for my condition?"
Now that I've won my fight with Anthem, I realize that an investigational spirit is one of my best weapons in both my fight for insurance coverage and my fight against cancer.
I'll be in Houston for the next eight weeks, mostly alone with my disease--and my computer. I intend to spend this time not only eating well and making jokes with the technicians as they zap me. Mostly I'm treating it as a chance to explore what brought me here and where to go next. I'll be searching medical journals and news articles, reading other blogs, and reaching out to fellow students who have learned similar lessons. Here are the questions I'm starting with:
- How rare is my condition, and how have other people in my shoes dealt with it?
- What defines a rare condition in the medical community, and how do the best doctors come up with good treatment plans? How is good research done despite small sample sizes?
- How rare are rare conditions? How are they treated by the insurance industry--and why?
- What makes student insurance different from other insurance types? Who is available to support us?
Stay tuned, and keep in touch!