When I was diagnosed with metastatic disease in 2013, my most significant worry was about progression of disease and the end of my life. Today, and over the last several years, I am living with stable disease. That stability has given me time to worry about those issues while also worrying about others as well. One of those “others” is my health insurance coverage.
The topic of healthcare and health insurance for Americans is a topic I wish I could avoid. It is a daunting subject of study full of political rock throwing and posturing done to persuade people that a certain plan will be best for a country with 324 million people. Getting as many people as possible to pay for an insurance plan allows for larger sums of money to be placed into a figurative pot that then can be used for those hopefully fewer members of that pot who are in need--that part is easy enough to understand. But the details of how it should be implemented, who the money should be distributed to, what dollar figure for premiums is actually affordable for the largest number of people, how to fund those that cannot contribute, and what health conditions and medicines insurance companies should cover makes for a complicated mess that is not easily agreed upon.
The way I see it, conversations concerning healthcare and health insurance must not neglect how government agencies and private insurance companies will manage paying for every desire that people have in terms of the prevention and the treatment of illnesses. The main obstacle for everyone getting what they want from any system is money; it is finite. I wish there was an unlimited amount of it, but there is not. Because of that fact the inevitable yes's and the no's in the care of an individual's health are unavoidable. No matter how hard we wish it were so and no matter how much each of us may want to help the sick and want the government and insurance companies to pay for every person's illnesses endlessly simply isn't possible. Decisions to treat or not to treat happen every day. So, in determining where best to spend the available funds means that someone somewhere will be left with nothing but hope. Hope doesn’t have any purchasing power. That someone could be me.
This post, though, isn't about the big picture of health insurance and healthcare in America. It is about my experience in it so far.
My health insurance is purchased through my husband’s employer. Every year his company negotiates a new contract with Blue Cross Blue Shield of North Carolina. So far, the changes have been minimal. The deductible has remained high causing financial woes for my family, but the benefits package has remained the same allowing me to receive the necessary drugs, surgeries, scans, genetic testing, and radiation needed to keep me alive. For that I am extremely grateful. With every change, I worry that a denial of coverage for some aspect or all of my treatment will come my way. On Friday, my worry became reality.
I received a large white envelope, and in that envelope I found words. Words that others have faced, but I had not until that day. There, throughout the first two pages, I read “. . . notice of an adverse benefit determination . . . declined to provide benefits . . . ” I found that someone in the medical review department of my insurance company decided my current treatment drug “does not meet the definition of Medical Necessity found in the member’s benefit booklet.” Wow, so many words when one was all that was needed. The ugly one. The big, black, bold lettered one saying—
And, I must let it be known, the denial is for a treatment that I have already had. That makes sense, right?
I knew what was coming as I read, but with all those extra words, for one hot second I thought maybe this wasn’t a denial notice. Yet, it was.
Page two read with more words of denial: “. . . coverage of ado-tratuzumab emtansine (Kadcyla) is denied.” Further down, I read, “ado-tratuzumab emtansine is considered investigational when coverage criteria are not met. . . . found insufficient peer-reviewed medical literature to show a beneficial effect on health outcomes compared to established alternatives. The member’s policy does not cover investigational services.”
Investigational? Kadcyla? What are they talking about? I have been on this drug for 3 years and 3 months.
I soon sent a message to the nurse navigator who works with me at the hospital where I receive treatment. She responded by letting me know she was contacting the people who will help me tackle this problem and get it appealed. Surprisingly, I felt calm that day believing the denial would be reversed. But, today, the heaviness I am feeling inside my chest caused by this denial further reinforces my ongoing fear that at any time when it comes to my treatment, someone will always be making decisions about it. Decisions about whether money should be spent on me or someone else.
How hard it is for me to accept that my existence is controlled by a disease and by the decisions of everyone connected to me. I mourn those lost days of which I believed I was in control of my living and my dying--oh, how naive.
Until this issue is resolved, my treatment #57 of Kadcyla (TDM-1) has been put on hold.
Breathe . . . I just need to . . .