I just returned from four days in the Bluegrass State with my daughter. It was lovely, she did amazingly well at her tournament, and I was so busy and involved that I spent no time whatsoever thinking about having cancer, not having cancer, radiation, or insurance. I was just me, doing my thing, and it was wonderful!
That is, I was in the Cancer Free Zone until I received a call from Dr. Ray Donc at the hotel the night before we flew back home. In a nutshell: The insurance denied the use of proton beam therapy, aaaaaannnnnnnd...also denied IMRT radiation! A double denial!
THAT was a surprise, to say the least. I had expected a first round denial for the proton beam, but to deny regular radiation, too? Way to keep things interesting, insurance! Thanks for that!
Anywho, Dr. Ray Donc and his peeps are ready to fire back at the insurance company. They need to put together all kinds of documentation and present their plans--basically how they would do the proton beam and how they would do IMRT as safely as possible. Dr. Ray Donc said that if this tumor were in my armpit, there wouldn't be a denial for IMRT--it's that inappropriately (and inconveniently) cozy relationship of the leftover tumor with my heart that is the wrench in the works.
Part of presenting the plan involves providing simulation data. To that end I will go on Monday for a CT scan with contrast to map out my blood vessels. (Reward: There is an outrageously delicious Italian deli that is located along the far trek to this cancer center, so after my fasting and visit to the Tube O' Zap, I can stop and get a cannoli on the way home! Yesssss!)
And Tuesday I see my cardio-thoracic surgeon buddy to let him look at the latest PET. And we can have a fun conversation about arteriosclerosis and I can get his take on this particular gamble.
I am not a person who has ever enjoyed gambling. I am a low-risk kinda gal. So all these percentages and probabilities and likelihoods and maybes are driving me crazy. I want a 100% clear path, one-choice only scenario, and no one is going to give it to me, and I'm not going to find it anywhere. Which makes sense: No one really gets that in life, right? So I will just have to take a deep breath, get my mind right, and keep moving forward.
The insurance appeal is in good hands, of that I am confident. I don't think Dr. Ray Donc and his team would commit to investing all the time and the immense resources they have to do this if they (a) didn't think they had a good shot and (b) weren't invested in a positive outcome. Yes, I'm sure they do care about me as a person. But perhaps slightly more importantly for them: They want the data that my proton beam treatment and lifetime followup can provide.
So I'll keep you posted. In the meantime, we'll all just enjoy...everything we can. That's really all anyone can do at any given time, right? Enjoy! (And maybe have a cannoli!)
Very frustrating! Sounds like you have a great team behind you, wanting to help you get the treatment you need. May they get the wording and documentation just right so the insurance with join your team of helpers too. Praying for you to have patience and hope and strength. I had a scone instead on a cannoli and enjoyed it thoroughly:-)
ReplyDeleteYou know, I just don't understand why we, as a people, have handed insurance companies so much power. Greed I get, I really do. I've watched a shit ton of Wall Street movies and I understand greed. But even the folks who swing these deals are human, with human parents and siblings and friends and colleagues who sadly, at some point in their lives stand a good chance of needing medical care and will thusly find themselves at the mercy of their insurance provider. Fifteen years ago a friend who is like a sister to me had Acute Myelogenous Leukemia. Never once did she come up against any resistance about treatment and she was in a clinical trial. In fact, Aetna, her provider, used to call her to say they were checking in on her to see how she was feeling and if she needed anything! She rang up over a million bucks in medical bills. It was a grueling, protracted, miserable slog up hill...but there was never a question about a bill. They all got paid. It frustrates the shit out of me to read that you are contending with denials for treatment while you should be able to focus soley on getting well.
ReplyDeleteSo I'm asking myself, when did this handoff of power happen? How did it happen? Why did it happen? My husband has been turned down for a silly nasal spray four times from Blue Shield. A nasal spray. It's $350 for a teeny tiny bottle for a 30 day supply which I think is ghastly. But the point is, we pay our premiums and are still denied the care we need. It is infuriating to me.
I am so glad that you have a team of eager experts who care about you as a person as well as pioneering a path to wellness for the people who are unwittingly next in line for the big C. I hope your doctors whoop some butt in their counter attack. I also think that the folks denying claims should have to look us in the eye when they do it. I could not do that job, I could not live with myself knowing that I made it one iota harder for someone who is ailing to get what they need to be well again. Something simply has to change.
I'm rooting for you Andrea!