Minutiae

Oct 18

I’ve just finished writing a letter to begin an appeal wherein I’m asking for compassionate use of Ibrance.  Our insurance has denied Ibrance initially, denied it again on appeal, and an external review is our last option to pursue there.  Separately from that process, I’m working with Pfizer (the company who developed Ibrance): we don’t qualify for their automatic assistance program, so I am appealing that, too.  I’m also pursuing a consult with a doctor in Indiana who has gotten this drug combination approved for a patient I know.  Last, I am working with my insurance company’s nurse to see if she can leverage influence to any of this.  Lord, I seriously pray that one of these will pan out!

Paperwork, phone calls, meetings, extra trips to the oncology office, appointments: it’s all I’ve been doing this week.  It’s mentally exhausting and physically time-consuming.  I’m really trying to not stress about this and to keep my worry tempered, however I also acknowledge that the stakes here are big.  Obviously, it is much harder to not think about cancer while simultaneously managing the endless minutiae to seek approval from someone — anyone!  Last night — after volleyball, after gymnastics — Brad and I spent an hour gathering documentation to try to support our claim that we can’t afford this medication.  It is sad to me that’s how we spent our hour alone together.  I find myself questioning the process, but I am forced to plod through the hoops as they are set.

On a positive note, I’ve had a significant number of people reach out to me via message asking for updates on the Ibrance situation.  It is humbling to me and speaks so much love to my heart that people who love me are out there wondering about my insurance woe.  There are about a billion things I would rather be thinking about and I am the one who is super invested in getting a positive result!  Thank you for thinking of us.

Due to the fact that Pfizer has a voucher program (established so that patients like me can start the drug in a timely manner while the insurance/payment cogs turn), I’ve been taking Ibrance pills for two weeks; the voucher gave me a four-week supply.  With gratitude, I take each pill and pray — given that it costs $476 per pill, I think it worthy of praying while I take each one.  Blessedly, I am feeling good!  It is remarkable to remember what it feels like to not be on chemotherapy.  I wish I could use more of my newfound energy on things that I want to do instead of paperwork and phone calls, but I am still taking what I can get.  My low-level nausea that I’ve lived with for the past year has largely resolved, so I am eating better and hoping I can ramp up my fitness effort significantly.

I ache to have a positive resolution in the short term, and am fearful of the future in the long term: we may run into this situation each treatment change from now on because I am so far down the list of lines of therapies.  Nonetheless, I vow to focus on my people, look into their eyes, and generate moments that matter.  Do today well; that’s my legacy, that’s who I am.

Yesterday was parent observation day for Greta’s gymnastics class, and it was adorable to watch.  She’s a tenacious kid on some of the elements, and flies through as fast as possible on others.  Seeing her wiggling with joy at my presence in her sparkly rainbow leopard leotard gave me a thrill.  She also convinced her friend that they should quit gymnastics and start ninja class (think America Ninja Warrior training) together, so I will be excited to see how that goes.  She’s fierce and strong, so I think it could be a good match.

Last night I sat with Maren while she did her math homework and studied for today’s test.  She is a delight: Brad and I both said to each other this week with feeling, “She’s such a good kid.”  It’s easy to love her, and I’m so proud of the ways she is blooming into herself.  She has a quiet intentionality I admire, she is a hard worker, and she takes nothing for granted.  She struggles with self-confidence and social dynamics, but I have confidence she will get there.  We talked about The Giver by L. Lowry over breakfast today; it is one of my favorite books and she just finished it.

Thank you for following along with both our minutiae, and more importantly, the stories of our hearts.  We are blessed!

 

29 comments

  1. Marlayne /

    I’m so Happy this new Rx is giving you more energy & feeling better ~ Prayers that the insurance company will pay ~ years ago, I worked on a committee @ Children’s Hospital on The Orphan Drug Law ~ My son was diagnosed w/Tourette’s Syndrome ~ he was diagnosed early & the doctors never put him on Ritalin (Thank Goodness, as they have found out the use of Ritalin & Tourette’s is not good!) I so Pray they come to their senses ~ You & Your Families Deserve to have this Rx covered ~ Prayers & Hugs 🙂

  2. Patty Wheeler /

    Jen,

    This makes me mad, sad and sick to my stomach that people who need life saving medication like you do have to fight. You are amazing as is your family. It is easy to love and admire you too. Maren sounds like you and your mom… Strong, amazing women.

  3. Lisa Marker-Robbins /

    <3

  4. Susan Taylor /

    I rarely comment but wanted to let you know that I’m hoping with you that one of the avenues will open up the possibility of having this medication covered for you. <3

  5. Praying, praying, praying. 50 years!

  6. Praying that one of your avenues will open up quickly. So sorry you are going through this. Prayers for peace and continued joy in your life.

  7. Wonder what the med would cost if it could be purchased outside of this country? Meds seem to cost so much more here. Ridiculous. You remain in my prayers.

  8. Kim Rourke /

    Jen, is there anything we “peons” can do on our end? I pray daily for you and yours and to “do today well” in your honor. Not sure the powers that set drug prices could pay this cost, and to think this is just one drug of many that has a prohibitive price tag. Grrrrr!

    In the meantime….love the kidlets updates, and soooo happy you are feeling physically strong. Love and prayers!

  9. Ugh- how frustrating! I can’t believe the cost of that pill! Praying Jesus opens up some doors!

  10. Eloise /

    Frustration doesn’t seem significant enough for what I’m feeling for you. Sending you so much love and strength for all the appeals and negotiations ahead. Praying for a positive outcome xo

  11. Oh, I’m so happy to hear you’re feeling good and energy is back in your body…there’s an answer to prayer! Continue to pray for His favor to go before you with your medication…it makes me want to cry and my blood boil all at the same time. Thankful for our God who has an “in” everywhere and the power to tell the wind what to do. I’m clinging to that, sister! Thank you for sharing this update…we keep praying. Love. Peace.

  12. Darlene /

    Hi Jen , I am going to give you my 2 cents on these appeals. Typically, approval must hinge on a few key words. I would write your Congressman and ask for his/her letter of influence, as well as use the term “financial hardship”. With the cost of each pill, it would be a financial hardship for a multimillionaire. So good luck and keep plugging. I am hopeful and confident will be approved. Many denials go through first and second appeal seem to be automatically denied until you go further up the ladder. Good luck and take care. Darlene

  13. Praying Jen.
    Kay

  14. Lisa Smith /

    praying unceasingly. love you.

    • Lisa Smith /

      PS. You are such a good Teacher of the lessons (of life). Thank you.

  15. Roslyn Mathie /

    You have made great choices all along this journey Let us know how we be the wind beneath your wings.
    Big Gentle Hugs

  16. Newbie Friend /

    Jen you better warn the drug company that if they turn you down there will be a tidal wave of wrath poured on them from your “people”! I am remaining positive that this too will all work out! Praying for you!

  17. Michelle /

    I do believe there is power in prayer . Tonight in my prayers Im asking God to perform His supernatural healing power in your body over this cancer. I curse cancer in Jesus name ! Jesus’ name is above all sicknesses ,illnesses and diseases.There is healing in His name and I pray for this cancer to leave your body right now in Jesus name ! I decree and declare that you are healed in Jesus name ! Love you Jen !

  18. I am praying for your access to Ibrance to be approved!

    Wondering if a revision or modification of your diagnosis code would be possible to gain approval.

    I know there are many different insurance plans even with the same insurance companies. And I don’t know what your diagnosis is. In my experience, I had UHC Silver Compass ( no longer exists) in 2016 when I was diagnosed with (stage 4) metastatic breast cancer ER + (hers negative, I think.) Approval for Ibrance was not a problem.

    I hope the financial eligibility form with Pfizer is just a formality, because I too don’t anyone who can afford $120,000.00/ year out of pocket for 1 of their medications! I feel blessed daily that so far my insurance companies have ok’d my meds.

    Another thought, any chance the American Cancer Society would pay for your meds?

    I know God will open a window for you!

    .

  19. Beth Acciani /

    I know how incredibly frustrating insurance companies can be. I would be happy to read through your policy and see if there is any legal avenue to take for your appeal.

  20. Mommaj /

    Ever since we’ve heard about the Insurance situation that’s been on my heart!! Praying that the Lord moves on one of these options – He already has the plan!! Love you Jen and family!!

  21. I think of you and your family and pray for you often. I am so disappointed that lobbying for life-saving medicine has to also be a part of your everyday. In a better world, this would not be your job. Or anyone’s job. I pray God’s Spirit will move to change a corporate heart or two. In the meantime, I’m thankful for your family and your community support system. You have been blessed by that. I hope your knowing how much you are being lifted up in prayer gives you both strength and comfort.

    As always, thank you for sharing.

  22. Shannon L Weiss /

    I pray and pray this all works out for you. Xoxo

  23. Christin /

    Dear God, open insurance doors!!!!

    Also, Jen, I see lots of comments of people who care and want to help. You have an army behind you. An army that wants to help you!

  24. "Another Jen" /

    I have nothing to add except that I am continuing to think about you and sending you all good wishes…

  25. Sherry /

    Jen, you continue to inspire us all! My prayers are with you in finding an answer to this terrible insurance problem. If there is anything we can do please reach out! May you continue to enjoy the wonderful times with those precious girls!!! Know that our thoughts and prayers are with you all.

  26. Hi Jen! I am a longtime reader and pray-er but I rarely comment. I just wanted to say that I am praying and also say that Maren reminds me so much of myself. I was a very shy kid and a hard worker at school. Social interactions did not come naturally to me and I relied a lot on my little sister (who Greta reminds me of!). However, through school and other activities, it gradually got easier and easier. By college, I was scared to go away from home, but it worked out great and I had super close friends. I am now much more confident socially and just wanted to share that with you as encouragement for Maren’s growth.

  27. Your family deserves to have you healthy and you deserve to have the proper medication that keeps you healthy! Praying for God to touch the hearts of the decision-makers and causes them to rule in your favor.

  28. Cindy Mitchell /

    God Bless You Jen.. You are so strong in so many ways. Prayers for great news in the future.