As of our last update, our family had some pretty good options. We have been meeting with the doctors at Mayo and worked on getting Trey prepped for chemotherapy. Yesterday we went in for our follow up to proceed and sign off to do chemo next Monday, or so we thought. Although we were told that this could happen we never mentally prepared. Yesterday we were informed insurance is denying Trey's chemotherapy's.
Days like yesterday, you really ask yourself "Why?"... "How can they do this to us?"... "Is this a joke?"... And most of all "What now?"... Our doctor did our best to reassure us we still have some options. Our best option as of now is filing an appeal. Our doctor assured us he is working on this appeal and has documents to provide to rebuttal with. "However, insurance wants a 100% fix and FDA approved drugs/treatments which in your case there are none." After hearing his "positives", we felt his "negatives" were much more powerful. There are no FDA approved drugs or treatments for Trey's cancer! He then went into explanation, which we knew. "You see you have a very rare cancer, the issue is blah blah blah". We have heard it and done the research, because there aren't enough people dying from this tumor, pharmaceutical companies can't profit off our needs. Trey asked is it possible to pay out of pocket for these medications, the doctor said it is very expensive. Temozolmide runs about 5k a month and the lapatinib runs about 7-8k a month. Knowing Trey would be on these for over a year, it is out of reach.
We continued to talk about other options. Dr. Jaeckle decided it would be good to represent the case for surgery. He understands we were informed it was a bad decision, he would like to hear from another source for verification. He also mentioned doing a much larger research for studies, not just on anaplastic ependymoma's. He said some studies leave out important factors which could allow a loophole for Trey to be a part of it. Such as leaving out age restrictions or not specifying a certain brain cancer for research. Admitting that this was still a slim chance, which we understood. Despite all of our doctors assurance, we still felt "negative" about the outcome. After giving our pharmaceutical company a call, it reassured that negative feeling.
We called to see how we could get this appeal rolling and what was needing to be done. After a few minutes with talking to the operator, he tried to transfer us to the department that declined our claim. We were on hold for a few minutes then he came back apologizing asking for more information. We gave him the medication that was declined, temozolomide and lapatinib, and explained these were both a pill form of chemotherapy. He tried again and came back with apologies. As tears rolled down Shandy's face, she then explained that time was of the essence and we had minimal time as the tumor growth is about 3-6 months until fatal. He understood and put us on a 10 minute hold......
Just to come back to say they are unwilling to talk to us at this time. We were told "they only like to talk to doctors". He apologized many times and took down notes. We then asked the bold question, what is the average turn time for an appeal? His response was the worst response we had all day "about 6 months". We said our goodbye's and hung up.
After a ton of tears, headaches, and Shandy eating a pint of ice cream later; we are able to recuperate and come back to the drawing board. This is our outreach for help. We aren't asking for donations, but asking for connections. Please help us link to someone that knows someone, that knows someone.... Thank you everyone.
"Thank you is the best prayer that anyone could say. I say that one a lot. Thank you expresses extreme gratitude, humility and understanding." ~ Alice Walker