PARP Inhibitors for UPSC

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MJS19
MJS19 Member Posts: 38 Member
edited December 2022 in Uterine/Endometrial Cancer #1

Good evening. I need to make some insurance decisions during open enrollment, and I'm wondering if anyone on the board is on a PARP inhibitor for UPSC. I have a choice between private insurance through work and Medicare, and since I think PARP inhibitors are not yet standard of care for uterine cancer (although they are for ovarian), I'm thinking Medicare would be a better choice, even though the cost of a PARP inhibitor on every Part D Medicare drug plan is in the $11,900-13,500 range per year.

If anyone with UPSC is taking a PARP inhibitor and is on Medicare or private insurance, I'd love to know if your insurance company or Medicare covers it.

Thanks,

MJS

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  • MJS19
    MJS19 Member Posts: 38 Member
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    I can't figure out how to delete my post, so I will do the equivalent of deleting it by saying that there is no need to reply. I have since found out that this use is off label, so Medicare Part D doesn't cover it and neither will private insurance.

    Thanks,

    MJS

  • MoeKay
    MoeKay Member Posts: 481 Member
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    Hi MJS,

    Have you looked into the possibility of a clinical trial? I found this November 30, 2022 Opinion Statement mentioning that there are ongoing clinical trials of PARP inhibitors for uterine serous carcinoma: https://link.springer.com/article/10.1007/s11864-022-01030-7

    It's my understanding that trial sponsors typically cover cost of participation in clinical trials. You might want to consider touching base with the corresponding author of this Opinion Statement to see if you can get any additional information.

    Good luck and good health!

  • MJS19
    MJS19 Member Posts: 38 Member
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    Thank you, Moe Kay. I looked into it through the clinical trials finder a couple of weeks ago, and there is nothing recruiting, open, or on the horizon that I qualify for. My oncologist is enthusiastic about PARP inhibitors for UPSC. He told me about them when I was first diagnosed three years ago and hoped that if I recurred they would by then be standard of care. Even though I was stage I, I knew I could easily recur, but I didn't think it would happen less than two years after my initial chemo and assumed that PARP inhibitors would be available to me.

    Thanks again,

    MJS

  • MoeKay
    MoeKay Member Posts: 481 Member
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    Hi MJS,

    I found a thread on this board from last year in which one of our members posted about her experience with the PARP inhibitor Zejula (nirapibib). See: https://csn.cancer.org/node/323228#comment-1682425

    As you will see, in post #11 on the thread, the member states that she worked things out with the drug manufacturer GSK, so that it ended up that she didn't have to pay anything for the PARP inhibitor. Since you said that your oncologist is enthusiastic about PARP inhibitors for UPSC, perhaps he will assist you in obtaining the drug without cost from the manufacturer. It might also not hurt to shoot the member an email to see if she has any ideas on what you might do to help you accomplish that goal. Good luck!!

  • MJS19
    MJS19 Member Posts: 38 Member
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    It's so kind of you to take an interest, MoeKay. A few days ago, I contacted the manufacturer's compassionate use/patient assistance programs, but there are a number of barriers. This would be off-label use, my income is high, and I'm currently insured through Medicare. All three of the drug companies have several different ways/programs that they make drugs available, and the eligibility varies within those programs. That was one of the reasons I considered going back on my work insurance, as that would eliminate one of the barriers. I'm still working on it. and I will post the outcome in case it's helpful for others.

    Thanks again for your interest and research. I have my final herceptin treatment this week and will have a pretty good idea from the CA-125 whether it is back and I need a PARP inhibitor. Of course, I won't know for sure until the after-treatment CT scan. It's possible that there isn't another recurrence -- my oncologist's guess is 15-20% -- but the insurance decision I need to make this week during open enrollment will determine my coverage for 2023.

    MJS

  • thatblondegirl
    thatblondegirl Member Posts: 386 Member
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    Hello, MJS

    I just responded a few minutes ago to your message. For others reading this thread, my doctor’s office took care of all the paperwork to get me the Zejula. I don’t really know the particulars of how it occurred. I was too sick from the chemo, sick of the whole cancer experience, and was disappointed and upset that now they’re saying I need a “maintenance” drug…..so, I didn’t care and didn’t ask.

    I wish I could be of more help. I send you my best.

    😎, A

  • MJS19
    MJS19 Member Posts: 38 Member
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    Thanks again. I know just what you mean about being sick of the whole thing.


    Warmest best wishes,

    MJS