I imagine the picture of being told that no known medicine will work for your cancer makes waiting a month to start a clinical trial difficult for some to comprehend, but the kind of leukemia I’m diagnosed with is a slow, chronic form that, for the moment, has been at least controlled superficially by Sprycel. The good news is that I’m finally logistically prepared to move forward with the start of the trial. The bad news is that my insurance has yet to approve coverage. So even if I wanted to start last week, I still wouldn’t have been able to.
I had an appointment this Monday, the 19th. It was supposed to be the beginning of my trial, but I found out on Friday that Aetna has denied my coverage.We are in the process of an appeal, but that could take up to 30 days. I’m not sure how long it has been since the appeal was initiated so I don’t really have a timetable of things as of this point. In fact, I don’t even know why the claim was denied. Needless to say, it has been a frustrating couple of weeks. Now I just have to wait. It can really eat at your soul if you let it. Just when you think you have a little momentum, there’s another roadblock, and another, and another.
One of the things that has been reinforced the most in recent weeks has been the understanding that things really are out of my control. I wrestle with that a lot. Maybe that’s because I want to feel as if I can do something to make a difference. Your whole life you’re taught that if you work a little harder, concentrate a little longer, or dig a little deeper, you’ll eventually reach what has eluded you. My physician’s assistant reinforced the notion that none of this is true when we had a conversation over the phone the other day. She said that my illness is a matter of genetics, and no amount of proper nutrition, training, or lifestyle will have an affect on my leukemia, good or bad, nor will it alter how my medicine works. It was not something that I wanted to hear, but at the same time, it removed a lot of the temptation to feel like this is somehow my fault.
I have no idea when I’ll begin the trial. I have three options at this point. My first is to wait out the appeal and hope that they cover the point of care costs as they would with any FDA approved drug (bone marrow, blood/lab work, dr visits, ecg, etc.). The second option is to pay those costs out of pocket. The third would be to move forward with the process of a bone marrow transplant. I’m still with the first option now. Just waiting. Just taking medicine that will, at some point, completely give out. Even if Sprycel isn’t going to save my life, it’s at least buying me time.