Archive for December, 2014

The pharmacy coverage game or how to get drugs covered off label!

December 9, 2014
When you are like me, beyond NCCN guidelines, I’m in this grey area where drugs that I need are not the first choice for the average oncologist. All of you know I have the wizard of wizards when it comes to oncologists. The wizard paired with my rock star husband come up with all sorts of potions to try. As predicted and expected, the tumor marker is rising. The goal again is to stay ahead of the progression. After my strange virus and slew of side effects, I started the daily chemo pill after Thanksgiving. I used to have a break even for a day of complete clarity, but now cloudiness continues daily among the new side effects. With my last chemo, the trace of protein in the urine coupled with the high blood pressure not only caused a decrease in dose by half, but has now caused me to be a 90 year old unable to exit the house before a routine blood pressure is taken among other issues. My days of exiting has become less plus I fear the germs of the season. While I remain house bubble bound, we have a new addition to the entertainment factor which is Amazon Fire TV. I’m not fully trained, but it seems fun. I should title a blog post how Amazon kept a Cancer patient sane! The addition of this pill is only taken once a day, but original dose is 3 times a day. Yikes. I can barely manage once. Tis the holiday season, but I find no records of last years cards, gifts bought etc…because that was a fog pain phase. It is often a blur of ailments, symptoms, side effects. Unknown at times whether it is the cancer or side effects and I must think back, look at my notes and get a perspective.

It is the current pharmacy game which takes a turn for a “where’s Waldo? ” type of adventure. For the past four plus years, I’ve always had to use a specialty pharmacy for expensive drugs. We begin the new game of off label drug treatment. So for 2 weeks, the paper trail nightmare starts and numerous calls are made. I get names, numbers, dates, and the mystery continues. I think this is their secret game. If you don’t call or push things along, you lose this game and possibly your life if you are like so many others who are too sick or rely on the system of paper pushers. In the meantime, I get a bill from UCLA for a surgery that didn’t happen. Even though, this was the one wheeled in and out before anything happened. Recall the Fellow who was loving the idea of surgery. Of course, the number of charges were excessive. I get a balance forward with no details and demand the details if only to delay payment and am told I’m the first to ask this ever. Yes, again because people are too sick to question, too tired to do battle. Spend time with family or friends or battle insurance and bills?!
The paper pushers seem to be winning this game and one day I was told it was in the process. Then, surprising news that now it is being moved to another specialty pharmacy since instead of a drug benefit it is considered a medical benefit. I call the new specialty pharmacy only to be told that they have nothing even though the one I just talked to said they sent things via fax. At this point, my option is to either start the process all again losing 2 weeks of time OR be the go-between with these specialty pharmacies. I choose path two after rolling the dice hoping for lucky number 7. Now, I’m given the wrong number for the new specialty pharmacy and the old specialty pharmacy says it is really up to the pharmacist dept when they want to fax the script. HUH? I’m thrilled to know this info and wondering how many wave the white flag at this point. I call again the first specialty pharmacy using words like rapid resolution, supervisor, manager, expert or anything that would translate to urgency for these paper pushers. I’m now told that the fax will be sent to the new specialty pharmacy. One more call to the new pharmacy and confirm that I have all the right numbers and they tell me that once received, this will start the paper pusher process. Do I think it will be done my Weds? I doubt it. ¬†I will continue to take this daily chemo pill, get the chemo combo pending my urine results on Weds and continue the pharmacy game. The game continues today when I call only to be told that even though it was escalated and the first pharmacy did fax the script to the new pharmacy, it is now in the black hole. Why you ask? Oh, no one knows why. Now, it will be escalated again. Not sure what is different about this escalation vs the old escalation. I’m now convinced it is a marketing ploy to pacify a patient. Okay paper pushers, “use the word escalate, so the patient feels as if we are doing something, but we are going to delay until the patient either pays out of pocket or gives up.” Yes, it is a scary thought, but seems a bit too real.
While my days are more cloudy, I ask you to find your sunshine during this crazy season. I also recommend making the most of your time. If you enjoy putting up decorations, do it. If not, skip it and do something else your family would enjoy together. If you love baking, do it. If you are at a loss for time, use slice and bake. It is about the experience and “kind of” the taste! If you really can’t get your act together for sending a card, don’t stress, don’t do it. Either do a New Year’s card or skip it. All these minutes can add up to less stress, more time with your family. Honestly, it is the simple things. ¬†Prioritize what is important and show your kids what should be important. It’s really not about the “stuff”. Take a drive, look at the lights, get a hot chocolate and laugh a lot. Today is what is important. Ask your kid to tell you what gift you bought them for the last 3 years. Unless it was something near and dear, I bet they will remember last year’s seeing a show, movie, or other fun family experience together. If there is one thing I am constantly reminded about besides the value of having good health, the stuff really doesn’t matter. There are so many who have so little. I encourage you like Alex encourages me to take a day during this December and give to others. Giving can be as simple as letting someone cut the line, smiling at a cashier, or thanking someone like your kid’s teacher. Find your sunshine!