NED - insurance denying herceptin?

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livebig
livebig Member Posts: 86
edited September 2017 in Stage IV/Metastatic Breast Cancer ONLY

Long story short, I was diagnosed stage 4 de novo and had 2 small liver mets that responded to neoadjuvant chemo - so much so that by the time they did a biopsy following my first round of Taxotere/herceptin/perjeta they were not able to get a good sample, so my results were negative for cancer in my liver. My last scan was clear.

Now my insurance company (Cigna) is denying me herceptin past one year because it "is not standard of care since I am not metastatic since it was not proven with biopsy to be in my liver.

My onc and I know that I am stage 4. It was all over lymph nodes (both axillary, intercostal, and sternal) and the 2 spots to live. He has argued with them to the top and it is still denied.

Is anyone able to share wisdom on next possible steps?

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  • illimae
    illimae Member Posts: 5,710
    edited September 2017

    livebig, wasn't there an initial biopsy of the liver tumor before starting chemo? I would think that would prove mets existed to the insurance company. Sorry, that's all I can think of to try.

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  • livebig
    livebig Member Posts: 86
    edited September 2017

    thanks illimae - the initial biopsy was done 2 weeks after I started chemo - so they were saying it had actually shrunk in size and results were "inconclusive". My pet scan and MRI confirmed liver mets prior to chemo and the consensus was start treatment right away and not wait on that liver biopsy, so sadly, no.

    Thanks for your response! Anyone else have success with persistance? At this point it's the only tool I have is to just call every fay

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  • MommyErin
    MommyErin Member Posts: 187
    edited September 2017

    Ugh! That totally sucks! So sorry you're in this situation! When I asked my MO about insurance covering perjeta beyond 6 cycles, he basically told me that if he puts in my chart that I'm stage IV, insurance will cover it. I'm surprised your MO isn't getting anywhere with them. :-( Maybe see if another MO will look over your original scans and provide a second opinion to insurance. Keep fighting Big hugs!

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  • RebzAmy
    RebzAmy Member Posts: 322
    edited September 2017

    The fact it shrank in size after chemo is extremely suggestive that it was cancer. How about before & after scans?

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited September 2017

    https://www.facebook.com/kevinmdblog/videos/101557...

    A friend posted this on Facebook. Another friend of mine who is an oncologist was going to start using this method the next day.

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  • NO1-2NV
    NO1-2NV Member Posts: 95
    edited September 2017

    livebig, I am sorry you have to deal with this.

    Next steps. Your MO needs to call and request a peer-to-peer with the medical director who denied the request for drugs. Depending on the insurance company, chemo drugs may go through a specialty pharmacy. Whom ever reviewed your records be it through a specialty pharmacy or through the medical side of the insurance utlization group needs some serious retraining. If your MO's office did not submit all of your information...this happens all the time...then the insurance person who reviewed your records should have called the MO's office to get the additional information. If the insurance company medical director still continues to deny the request with all of the clinical evidence and a peer-to-peer with your MO, then you will need to request a fair hearing. Some insurance companies allow your MO to submit a request for a fair hearing on your behalf while others require that you request it. Call the customer service number on the back of your insurance card and ask.

    Also, if your insurance company has nurse case managers ask for one. They are responsible for coordinating your care. They are not the same as a navigator with your MO's office/clinic.

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  • livebig
    livebig Member Posts: 86
    edited September 2017

    hi there! Thanks for this response!

    I have a case manager who is currently fixing all of it. It ended up revealing that my oncologist is more wishy washy than I thought. In my mind - on stage 4 and need herceptin to stay NED. But he thinks I can just do the year.

    I mean - the metastatic horse was out of the barn, right?

    So I've got some circling back to do with him.

    I so appreciate all of your practical step help! Thank you

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