I understood this from an objective perspective prior to my terminal diagnosis with Stage IV metastatic breast cancer. I have fought with insurance companies for decades as a lawyer and hearing that the system needs to be fixed in some or a lot of ways is not entirely unknown to me as a concept. There is, however, a large discrepancy between knowing something and experiencing it. In other words, fighting on behalf of a client is far different from self-advocacy.
Case on point, my newest prescription, Piqray.
Some of you may remember that I had a PET scan on August 2nd. On Monday, August 5th, I learned from my medical oncologist that I was experiencing progression. She labeled the progression as mild since I “only” have two new lesions in my bones and there is still no organ involvement. We decided, during that appointment that I would start Piqray and Faslodex as soon as possible. She submitted the prescriptions electronically while my husband and I sat in front of her.
It is difficult to describe the amount of anxiety that follows the news that cancer is growing unchecked, that the medication is no longer working.
It is extremely difficult to describe the amount of anxiety that follows the news that you must start a new medication, with new side effects.
I waited a few days before following up. My insurance company didn’t have the prescription for consideration, but I was trying very hard to be patient, which is decidedly not in my wheelhouse. When I called and emailed my doctor on Friday, the 9th, I was finally told that the prescription never made it to the pharmacy. My medical oncologist is in the same building as the pharmacy and they use the same computer system. I’d thought that would help. Nope.
Despite the fact that my medical oncologist’s office knew that the pharmacy didn’t have the prescription, no one walked the prescription to the pharmacy (a distant journey on the same floor of about 2 minutes) until Monday morning, the 12th. When I called to find out the status, I asked for the required internal review to be expedited.
I called the following day, I was told it was processing and there was still no communication to my insurance company.
Wednesday, I had finally run out of patience. When the first person to answer the phone at the pharmacy had a snarky attitude, I insisted on being transferred to the person actually in charge of getting medication approved. There, I found out that not only was the internal review not expedited, they then called the wrong insurance company.
I literally was bouncing back between my insurance company and the pharmacy all day. The people in the call center that kept answering my calls started saying that they recognized my voice. When the pharmacy finally got everything sent to the right place, I sat on the phone with the review team at my insurance company while they approved the medication. It took 5 minutes, if that, once they had everything from my doctor.
At the end of the day, my medication was ready for pickup on Thursday, the 15th, and I was ready to start when I received my chemo training, but I literally spent approximately 5 hours on the phone Wednesday (that doesn’t count all the calls and emails in other days) to make it happen.
5 hours at my hourly rate while I was working most recently as a lawyer comes out to $1,875.00. Think they would pay if I sent a bill?!
As a patient, I do not think that is ok. As a patient, the amount of stress and anxiety this caused is unconscionable. We are told over and over to reduce stress, that cancer is fed by stress and the byproducts of its affect on the body. And yet, the very people who are assisting me with fighting the cancer cause extra stress.
Oh, but it does get better …
On Friday, I had my scheduled chemo education and the first Faslodex shots. I spent nearly the entire day at the cancer center and learned literally nothing new. A nurse practitioner literally read the drug insert to me and when I asked knowledgeable questions because I’ve been doing A LOT of research, she either gave us answers we knew to be wrong or she didn’t know. For instance, diet is a huge issue with my new drug and she said to simply avoid processed sugar. I spent hours and my insurance company paid hundreds of dollars for that. Then, I learned that the modus operandi at the infusion center is to de-thaw the Faslodex shots (which takes 30-45 minutes) only after one physically checks in at the infusion center. I’d been in the building for hours and checked in when I arrived but didn’t go all the way up to the infusion center. If they’d taken the shots out when I arrived, I wouldn’t have had. I’m working on a solution for this, but as I explained to anyone who would listen, if I have an appointment at a certain time, I actually expect that I will be seen at that time. Crazy, I know, but I do have other things to do and wasting that much time three times this month!? Oh, hell no.
The health care system in our country is broken. I have private insurance, so everyone working with me has to appease a for profit company, a company that is looking to deny claims in order to turn more profit. My insurance company has only had the temerity to deny one thing last year (this is one thing denied in the two years since my initial diagnosis). They’ve not attempted to deny anything else, but that is always something to be concerned about, to be ready for.
Why should anyone struggling with a terminal illness have to deal with that? Why should anyone have to worry or budget for medical bills that should be covered by insurance?
Yes, I’m going to get my medicine. Yes, we are hopeful that this medicine will give me more time. Yes, alls well that ends well.
No, it should not have come to this. No, patients should not bear the burden of fighting with the very people who are supposed to care for us.
Our health care system is broken and it needs to be fixed, before it kills those of us it is supposed to be helping.