Phone cords tangled in a ball with health insurance cards splayed on the ground.

Insurance Saga -- Vigilance Paid Off

Upon diagnosis in October 2017, like many of us, I was clueless as to the process and what I would be up against financially. The cancer money tree doesn’t start growing in the front yard unfortunately upon diagnosis. I was literally sick and nauseous when working with the insurance company, doctor’s office, specialty pharmacy, and even the manufacturer. It was daunting, to say the least. These insurance company employees answering the customer service line are non-medical people making life-changing decisions for us from a mere script on a computer screen. How can this be?

Denied my first-line therapy

I was denied payment for my first-line therapy of Tagrisso. The reason was that this drug is normally not used as a first-line treatment. I called. I fussed. I almost cried. I explained that this drug was necessary for me as I had the exact mutation the drug targeted.

Of course, the person on the other end of the phone was clueless and merely reading a script. My only response was “I am sorry ma’am”. This is where I found strength and ammunition. This is where my determination to fight for this disease and myself showed up. I changed my entire persona from weak and pitiful to courageous and argumentative.

From scared to courageous

I asked the gentleman on the other end of the phone open-ended questions as if I were a prosecuting attorney in the courtroom and he was on the witness stand as the suspect. I sternly asked him what he would do if this were his mom, wife or sister. There was an entire 30 seconds of silence which resulted in me breaking the silence to ask if he was still there. He answered. I never allowed him to not answer my question. I repeated my question. He said he would fight to get answers. You would?

I begged him to not view me as just a number on a computer screen, but a real person that had her whole life planned out and who just hoped for tomorrow and the right tools to fight this disease. My doctor said I needed this medication. Why are you preventing me from fighting my disease? Who else can I talk to? Nobody.

This went on for an entire day. Phone calls to the doctor's office, the insurance company, the pharmacy, and repeat -- all while trying to work that day.

Phoning a friend for guidance

I, thankfully, have a friend that has worked in oncology for over 17 years. I called her almost in tears. What can I do? They are saying I can’t have this medicine that is a slam dunk for my disease and will have to have infusion that may or may not work and more time for these tiny tumors across both lungs to continue to grow and spread. The insurance company is going to let me die. She said for me to give her a few minutes and she would call back. By this point, I am exhausted. Utterly mentally and physically exhausted. Confused. Angry even.

Scared I would be denied my life-saving treatment

I call my husband. What are we going to do? I am scared. He says we will just pay out of pocket until we learned that one month’s supply was $15,000. Anxiety and fear set back in. What on earth will I do?

Meanwhile, the doctor himself has informed me that he has put a call into the insurance company on my behalf. Same story -- second verse. They aren’t budging. They are reading a script. That script hasn’t changed in two hours; therefore, we must figure out something else.

At this point, I am ignorant of FDA approvals and first lines versus second, third, and fourth. My doctor said that I needed this medication based on my mutation and I was determined to move mountains to get it.

Discovering a treatment loophole

My friend in oncology calls me back. She asked for a fax number to send me an article. I was confused. An article? I need answers why are you sending me an article? She told me to read the article and she would follow up with me shortly as she was in between patients. I received the article and read it over and over trying to interpret it. I finally was able to grasp and comprehend what she and the article were telling me.

This was an article stating that the FDA had approved Tagrisso as a first-line in September of 2017 and this was almost November 2017. This was pure gold in my eyes. I jump on the phone with my doctor’s office and relay this wonderful information. They ask for a copy. I fax over to them.

I am almost jumping up and down at this point. We’ve got some ammunition now. The doctor’s office calls and advises me to write an appeal letter from the patient perspective and to include that article. I was informed that my doctor was also going to write an appeal and we would go from there. Hope. Hope was born at that moment.

The kind people who rallied behind me

In the meantime, my husband was working behind the scenes with me and asked about contacting the manufacturer of the drug to see if there was any assistance there. When we called, the manufacturer asked to speak with me directly. Their kindness and effort was first class. They treated me as if I were one of their very own family members. They offered empathy and even prayers. The lady that I spoke with shared personal stories of cancer in her own life.

They confirmed the first line release that the article read and explained that most insurance companies had not yet received the addendum; therefore they had old information. The manufacturer also sent me 15 days of meds for absolutely free overnight. They called to make sure I received it and advised to call back if I needed more and they would send more in the event compliance wasn’t reached with the insurance company within those 15 days.

Vigilance paid off

Thankfully, within about 7 days, the insurance company showed up, approved my prescription and pushed it through. I am still on Tagrisso today -- 25 months later.

This was an event that I don’t want to go through ever again. The emotional rollercoaster that comes with cancer yet being told you can’t get a drug that you absolutely need is a completely different coaster in and of itself. Vigilance paid off in this case and I am thankful.

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