Insurance issues are the worst side effect of having cancer!

You wouldn’t believe the story if I told you. Honestly, I told the idiots at our insurance that the worst part of having a terminal illness isn’t that or the side effects of chemo, but having to deal with them and their new constant “denial” of drugs that work for me. Now, this is not even mentioning the huge burden it puts on an oncologist who has hundreds of patients he is trying to help. UCLA sent a 27 page document with 3 case studies why I should be getting the drug I need. Instead, they came back with denied and called UCLA for more info, but didn’t tell them what info they needed. ONE week passed by and nothing was done except a real idiot who called my internist to tell her the claim for chemo was denied. I guess reading is a skill that is not required for denying insurance claims. My internist can’t even order chemo and lucky she is so fabulous and her office staff so meticulous that they phoned me with this info. Besides all this, it used to be that claims that were having “issues” we were able to see online, but now they are hidden in a black hole to force a patient to either file bankruptcy to pay for the ginormous cost of treatment (can be over $100K monthly, yes it is true for newer drugs so pharm companies can make up the cost for all their trials) or just give up and die. You know me! There is no giving up here. So even though Jim took time out of his day to have a conference call last week with idiot #2 at the insurance who assured us she would escalate and find out what the status AND move things along, NOTHING was done.  We had another call on Friday (of course at the crack of dawn because no one in insurance works on the west coast, so again just more struggles for west coast cancer patients)  to find out absolutely nothing. I can now add up the hours I have spent on this project to about 2 days. Two valuable days lost on trying to get a drug which has multiple case studies that it would work and I know it works because I had it on 8/6!  I called again Friday only to finally be escalated to Paul the supervisor. I have zero confidence in Paul. I also have zero confidence in the medical “doctors” reviewing my oncologist’s 27 page fax of evidence to support the use of the drug for me. I really believe that their doctors are veterinarians and definitely not oncologists and definitely not gynecological oncologists. They are determining my care, my future treatment, and are able to easily stamp my life away to “denied”?  This is the sad reality for all patients who have any type of illness. It is one giant game where the many paper pushers involved have no care, concern, or decency as they are probably just thrilled to have a job and hate their jobs. I always like to shake them with the reality and ask them how should I explain to my 13 year old that his mom can’t get a drug which will eliminate the malignant fluid which continues to grow because the insurance company’s strategy is for his mom to give up?

All this insurance side effect game was just one more frustration added to the equally frustrating week. I learned on Monday that my oncologist was in Europe when I got my Weds treatment. How did I learn about this? By an email triggered from UCLA changing my appointment to another oncologist whom I met once? Being treated at UCLA for over 4 years, I’ve met the many many oncologists there with all different expertise beyond gyno, but why do I get one I’ve only met for 5 seconds. This week was a bit different since Jim who always takes me for treatment was away for work. I had my friend, Elina take me. If I didn’t have her there no one would have believed my story that this oncologist saw me for less than a minute. I am not even kidding. Elina had the list of questions we needed answered and lucky we prepared on the drive up, because we had no idea that we would be chasing the doc down the hall asking for answers. In the time, Elina pulled out the paper from her purse, the doc was gone. This is to give you an idea of how fast it was. We both shook our heads in disbelief. I wondered if she was going to charge my insurance $800 for the visit (could all this be part of the problem of this system) and was she just this way with me OR all my oncologist’s patients. This seems unacceptable for any oncology practice. Even when in the factory of trials at UCLA this summer, I don’t think I was dismissed so quickly. Yes, my symptoms were ignored since they had different goals of drug toxicity, but here I thought it was different. Again, my nurses have my back. I had visits from many of them reminding me that the drug that I need the insurance to pay for did work for me. Just want to mention that it is the principal of the thing with this insurance game as Jim reminds me he would spend every last cent getting me well because it is only money and I am his world as he is mine.
This all leads to the development of the lizard baby, cancer baby, or plain ole’ I can’t touch my toes inflation of the belly. As usual, this developed day by day until the tipping point where my body cannot process this malignant fluid if there isn’t a drug to get rid of it. This causes a whole host of problems.  Now being an expert in avoiding a major crisis, I booked myself at Hoag Irvine for the draining party. Of course, not only did we have an insurance call that morning, but I went to the Renaissance to meet the gal who is helping me with the centerpieces for the bar mitzvah. Crazy? Yes, of course I am. Jim knew better than to ask me anything except if I could drive. Having zero pain meds, I was good to go wearing my absolute comfy clothes without looking like I woke up and was wearing my pajamas. I went with the idea of that I don’t know about tomorrow, so I just had to do it. Jim and Alex attempted to support my craziness with their concerned smiles. After that fun sunshine of seeing these amazing centerpieces exactly how I could dream of how they should look, I was ready to drug up, pain free, to face the drain. I do love the IR Doc who has the process down to second by second, play by play, pain by pain, announcements every step of the way. I like knowing what is happening and felt more at ease this way versus the UCLA IR Nurse idea of “stop asking too many questions, no one  asks this many questions.” After the 3 lbs lighter, I could breathe much easier. The unfortunate thing was that it came back the next day.
Again, much avoidance of the river of denial, I am forced to face the music and send multiple emails to UCLA and my doc while he is most likely on a plane from Europe to the US. Jim is armed with his next steps of evidence. Alex is cheering me on. I have to admit that I hate feeling like this when I know the drug is available to make me dance on the tables once again. Okay, maybe dance on the floor. So, while I feel the breeze through the windows and smell a hint of the ocean, I see my sunshine, but am grasping at the rays beyond the clouds. Alex plays his concert for me and I feel my sunshine once again. In the meantime, I will drug up and take a nap. Please find your sunshine today, appreciate every moment because today is now and tomorrow is yet to come.
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