First Week of Radiation: No Superpowers, No Insurance Coverage, and Tumor Coming Back

So we’re nearly at the one-week mark of starting radiation treatments and I have yet to see any superpowers. Dangit.

We also got a letter from our insurance company, Blue Cross Blue Shield, informing us that they are denying coverage for my radiation treatments because it “does not meet the criteria of ‘medical necessity.'”

I have cancer. The tumor being irradiated is aggressive, as in incredibly fast growing. Where, exactly, is the dearth of “medical necessity”??

Obviously, we’re appealing.

And on the aggressive and fast-growing front, I can feel the tumor beginning to come back from where the chemo knocked it down. Right now, it’s just an uncomfortable pressure in my palate and against my last upper-right molar, but I remember this feeling. It will become blindingly painful in a matter of days unless the radiation overtakes it and starts pummeling it back again.

The radiation is slowing it. I don’t need painkillers yet, at least. In April, at this many days out after I finished with my R-CHOP chemo regimen, I was already taking daily painkillers and starting to ramp up the doses. And it was a week later that I went into the hospital for the first round of R-ICE chemo, needing dilaudid to manage the agony.

It’s a race to see if the radiation can hammer it back faster than the tumor can grow to a debilitating size. There’s no way we can stop in order to argue with Blue Cross Blue Shield about whether my radiation treatments are a “medical necessity.”

I have much fury, distress, and outrage.

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24 Responses to First Week of Radiation: No Superpowers, No Insurance Coverage, and Tumor Coming Back

  1. This is the second time I’ve seen recently that treatment for brain tumors is ‘not medically necessary’. I’ll think good thoughts for your appeal!

  2. Anne says:

    You do have a superpower. It’s called surviving. Will there ever be surgery? Sending love and prayers.

    • Eugie Foster says:

      No surgery. Lymphoma, being a blood cancer, is treated with chemo and radiation but not surgery. I’m not exactly sure why–and as the tumor is the only active cancer the last two PET scans have identified in me, I’ve wished several times that they could just cut this tumor out and have done with it–but that’s the medical protocol across the board.

  3. Diana Munoz Stewartd says:

    Eugie, please let us know if there is anywhere we can donate to help with the bills. I hope the pain stays away.

  4. Amy Sisson says:

    I wonder if it would help if we carpet-bombed the insurance company with letters. It’s clear to me they are just hoping you’re one of those folks who will just accept what they say at face value. It’s effing criminal that they are wasting your time with outright lies like that.

  5. Pam says:

    Set a Twitter fire!

  6. Ellen Eades says:

    I agree, this is outrageous and I share your distress and fury. I hope Twitter or a letter campaign can get them to see reason. So sorry you are going through this.

  7. Ellen Datlow says:

    Eugie, I don’t know if this will help, but this is exactly what Cellist Zoe Keating went through with her husband recently. I hope you have someone who can help you with the phone calls necessary:

    • Eugie Foster says:

      Thanks, Ellen. BCBS obviously has a “denial” template, as the first part of Zoe’s notification of denial of coverage is almost verbatim to what we got.

      My radiation oncologist has already started appeal proceedings on my behalf and fully expects the denial will be overturned, although it may take a while. He’s apparently seen this before with BCBS, is familiar with the appeals process, and has a lot of documentation and medical standards already compiled to forward to the appeals review people. Apparently, the issue is that BCBS is using guidelines from 2009 because, of course, medical science–especially oncology–doesn’t move forward at all in five years.

  8. Eileen Gunn says:

    Eugie, I hope you have gotten through to someone at BCBS who can make things right. Please don’t worry about the money: there is a community here who will help. Just fight that tumor! My thoughts are with you. Please let me know if there is anything I can do. — Eileen

    • Eugie Foster says:

      Thanks, Eileen. In addition to my radiation oncologist going to bat for me–and he’s apparently had experience doing this for other patients with BCBS–today we’re going to see if BCBS has a patient advocate we can coordinate with on our side.

  9. E Krock says:

    Which BCBS Twitter account would we start @bombing? (Make sure @ isn’t first character of tweet so it’s publicly visible.)

  10. E Krock says:

    Looks like @BCBSGaPR needs some bad PR. Could also have fun with @healthjoinin. Any objections to our beginning to voice our displeasure on twitter? Remember, put a space or other character before any @ at the start of your tweet to ensure it’s publicly visible to all!!!

    • Eugie Foster says:

      No objection at all, Eric. BCBS obviously needs impetus to update their egregiously outdated medical standards and guidelines.

  11. Kari Sperring says:

    Oh, no! I am so sorry. The US healthcare system is heartless and, to my British eyes, just immoral. You should not be in this situation.
    I’m off to buy some more of your books, in the hope that that’s some tiny help.

  12. Bridget A Wheeler-Gehrling says:

    This is complete Bull$$$$! I am a cancer survivor and had many similar battles. I feel your pain. What can we do to help?
    How does one pressure a multinational pirate (sorry to give pirates a bad name in association, but…) to do the RIGHT thing?

  13. Debra Levey says:

    My heart hurts for you. I have spent anywhere from 1 to 20, yes 20, hours a week on the phone with BCBS over the last 6 most. Their MO seems to be deny, deny, give in to those who persist. It helps to call, to demand to talk to a supervisor, to keep a log and to threaten to contact the Office of Insurance and Safety Fire Commissioner, Consumer Services. They actually can help.

  14. Diane says:

    Sorry if I overtweeted earlier. What your insurance company is doing pushed all my buttons, and I am furious, distressed and outraged on your behalf. It’s just indecent that people fighting cancer–and it is an exhausting physical, mental, emotional, as well as medical battle–should also have to fight to get the insurance companies to disgorge some of their obscene profits on the service they charge exorbitant fees to provide, in the first place.

    BTW, Catherine Lundoff’s retweet of your post turned me on to your work and I just bought A Vampire Quintet. One story in, and I can already tell I’ll be buying a lot more. *G*

  15. Nora O'Neill says:

    These kind of denials were supposed to be eliminated with the affordable care act. The politicizing of the ACA has almost destroyed the value of the intended program. I am hoping you have sought out an online community for support. See if you can find a patient advocate that is NOT part of BCBS. It is a growing field. Any advocate provided by an insurance company or a healthcare facility will have the organizations’ best interests at the forefront. Give the advocate authority to read and be involved with all of your care and let them tackle the animals. You need your energy for you and life. I used to work Oncology & the Bone Marrow Transplant. I advised a husband once to hide their assets as he verbalized that he didn’t know how he and his wife would manage the costs of her cancer. It seems to be about profit, blood money, in healthcare as it is constrained by the corset of American Capitalism. You are in my thoughts and prayers.

  16. Pingback: Shit That Pissed Me Off – 6/13 | Grail Diary

  17. So much rage over this I can barely see…

  18. Marta Randall says:

    Bastards. Years ago I worked for a law firm to which BC outsourced some of its work. I asked my contact if she and her husband had BC insurance, and she reacted with horror.

    Good luck to you. Luckily I have Medicare and Kaiser’s Senior Advantage program and they are doing well by me … although I haven’t seen the bills for co-pays yet.

  19. JMangold says:

    I am outraged at hearing the problems you have had with BCBS. This is ridiculous.
    Not a medical necessity? If your treatment is not, what is?
    Have you had any luck with your appeal? Don’t give up and don’t let them breath for a second.
    My wife and I are thinking of you and hope that the treatments will have full effect against the tumor.
    Keep fighting.
    We are all pulling for you.

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