03/27/2013 12:46 pm ET Updated May 27, 2013

My Health Insurance Nightmare

Ah, health insurance. If you have a job that pays for your health insurance and have never had to deal with the insurance companies directly maybe you get a warm, fuzzy feeling when thinking about the security of your health insurance. For those of us who have gone through cancer treatment or who are self employed and have had to navigate this ultra confusing world by ourselves it most likely strikes fear in your heart. I can hear the collective sighs of all of us who have been through the ringer when it comes to health insurance companies.

Let me backtrack a little. I was sitting on my bed after coming home from my appointment with the first oncologist that I was recommended to. (I ended up getting second and third opinions and choosing the third doctor. I believe very strongly in getting at least a second opinion especially when you've been diagnosed with a serious disease.) The first oncologist had me convinced that radiation was a likely part of my treatment along with the requisite six months of chemotherapy for the Hodgkin's Lymphoma that I had just been diagnosed with. The other two oncologists said that they would avoid it at all costs, unless absolutely necessary. I'm not saying that the first oncologist was wrong, she obviously was giving me the right information but the other two oncologists presented it in a way that didn't make it seem as scary or as inevitable. They let me know it was certainly a possibility but it definitely wasn't absolute. I chose the third doctor that I met because I needed a smart, compassionate doctor that I could talk to and ask any questions of and I didn't settle until I found that doctor. It's so important that you're comfortable with your doctor and that you feel like you're being heard no matter how insignificant you may feel your questions are at times. When you're diagnosed with cancer it's like being dropped off on a foreign planet, alone. Everything is different and your doctor is your tour guide. Nothing is ever the same again and you depend on them to navigate this new world.

So there I was, sitting on my bed, getting ready to make some phone calls. I made a lot of phone calls from my bedroom. My children were small at the time, my daughter was seven years old and my son was three. Although I didn't know how much they would understand I didn't want them to hear every little phone call about cancer, cancer, cancer, until I knew exactly what was going on. My husband and I needed some time to know exactly how much and exactly what we would tell them. So as my head was swimming I stared at the four prescriptions spread out on my bed just staring back at me, all for testing required before I was to start chemo. One for a heart scan, one for a lung function test, one for a PET/CT scan and one for a port. My first phone call was to our health insurance company for pre-approval (cue scary music). No really, think Norman Bates scary.

The representative that I spoke to from the insurance company was very nice as she expressed that she was sorry to hear about my diagnosis. She began to tell me what testing was covered and then the hammer dropped. It went something like this: "We cover most of the testing that you just mentioned but we don't cover chemotherapy." Talk about being kicked when you're down. I had just been diagnosed, I didn't know what stage the cancer was at, I had a family at home that I wanted to live for and now what? Despair set in, that's what. I knew it wasn't her fault but all I could think was you mean to tell me that the insurance that my husband and I work hard to pay for doesn't cover chemo for my very treatable cancer? Rip-off insurance say what?

My husband was still building his landscaping business at the time and we were getting by financially. We certainly wouldn't be able to pay for treatment out of pocket (I'm not sure there are many people who could). My main job is raising our children but I also work part time from home doing medical transcription (that's a fancy term for typing out doctor's reports). So we were doing the best we could not unlike most young families. We were both working and we had the health insurance we could afford which unbeknownst to us translated to "super crappy insurance." We knew it wasn't top of the line but we had no idea that it was this bad. Who thinks to ask what disease might or might not be covered when getting health insurance? You just assume that you pay a lot of money and the coverage is going to be there for you if and when you need it. Um... wrong!

Thankfully I knew enough that you could find programs that would still treat you if you were having financial issues. I told my doctor what was going on and he and his team helped me get set up as a clinic patient for those of us who find ourselves "underinsured" or with other financial issues. As a result most treatment related expenses were covered.

I know that health insurance is a huge hot button topic in our country and I don't have the answers. What I do know is this, health insurance is a right not a privilege. When you're literally fighting for your life you shouldn't have the added stress of worrying about whether or not you can afford to get the treatment that you need. People shouldn't have to die from treatable diseases because they can't afford to get treatment. I look forward to the day that health insurance companies actually care about our health more than their bottom line.

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