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When My Insurance Said My Life-Changing Surgery Wasn't 'Medically Necessary'

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Three years ago, I began having symptoms of endometriosis, except I didn’t realize this was the case at the time. I remember it like it was yesterday. One minute I was a healthy, happy, fit, active 20-something, and the next, I was fighting just to exist. The two-year journey to diagnosis was treacherous, and even worse was the treatment I received from far too many doctors after diagnosis: the doubting of my symptoms, the dismissing of how terrible I felt and the lack of concern for the lack of quality of life I now had.

Even through all of that, I persevered. With the help of my wonderful family and amazing boyfriend, I pioneered and got myself to one of the best treatment centers in the nation, the Center for Endometriosis Care in Atlanta. There is no cure for endometriosis, but at the CEC I was able to have excision surgery (surgically cutting out any endometriosis implants ) which is the “gold standard” treatment option with high potential for long-term relief from the disease. Last month, I traveled across the country from California to Atlanta. To me, there were no other options. This was my last shot at getting my life back.

Little did I know, what would be even more difficult than being diagnosed and receiving proper treatment, was proving to my health insurance carrier that traveling to a specialist out of my network was medically necessary. Two months prior to surgery, I put together a very compelling argument. Over the course of three years, I tried every hormonal treatment thrown at me, with no relief. I did a three-month course of a medication used to treat prostate cancer, which put me into medically induced menopause. The side effects were unbearable, and my symptoms worsened. I had a surgery, performed by a non-specialist, using a technique not shown to be as successful as excision. This surgery left me in more pain than before. I did everything I possibly could have done before turning to this option of last resort. I had paid my dues. In my head I thought, “There is no way they can say no to covering this.” I could not have been more wrong.

I finally got around to opening all of the mail waiting for me after getting back from Atlanta. In the pile was a letter from my insurance, denying my appeal for them to cover my surgery at the CEC as an in-network provider. Their argument was that they have providers in their network that can do what the CEC does, and therefore my claim wasn’t “medically necessary.” I sent 50 pages of literature, including my precious medical history, outlining why this was false. It seemed they didn’t read a single page. My stomach sank after reading the letter. I got so emotionally overwhelmed that I broke out in hives. I was only 11 days post-surgery. My immune system couldn’t handle the added stress. Now, here I sit with a $115,000 medical bill, and not a clue about how much, if any, will be paid for.

The number of emotions running through me are countless. Angry that we live in a country with so much opportunity, yet such a flawed healthcare system that I think the average person is oblivious to. Helpless, as this was already my second appeal. Grateful that though I may face a lifetime of debt, I’m still lucky enough to have had this life-changing surgery. Sad that there are millions of women who will continue to suffer because there is just no way for them to get excellent care. Confused, because as a nurse manager,  I have a front-row view of this flawed system and see injustices day in and day out. How do I continue in this profession having had a look “behind the scenes” of just how crooked it can be?

My take-away from my insurance company was this: You may have so much pain it’s excruciating just to exist, suffer fatigue, have so much difficulty breathing that it feels like you’re starving for air, have countless sleepless nights, lose so much weight that you’re unrecognizable, experience unrelenting nausea and constipation and lose your will to live, but at the end of the day, your one chance at survival is “medically unnecessary.”

There has to be a better way. These are people’s lives we are talking about! As hopeless as the situation may seem, I refuse to let this story end here. The decision of a life of sickness or health for another human being shouldn’t be as casual as flipping a coin heads or tails. These are our mothers, fathers, sisters, brothers, ourselves. I know one thing: A fire has been ignited in me to seek justice for all of these people, for my fellow people with chronic illness and for myself, in any small way I can.

The Mighty is asking the following: Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a negative or surprising comment that caught you off guard. How did you respond to it? Check out our Submit a Story page for more about our submission guidelines.

Originally published: June 9, 2016
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