Kara was diagnosed with food protein induced enterocolitis syndrome (FPIES) in August of 2010. She has had many FPIES reactions and complications that have lead to numerous hospitalizations and specialist appointments. It was a huge sigh of relief to finally have some answers and a diagnosis, however we have to remind ourselves daily that this is a very serious disease and this is only the beginning of the long road we have in front of us.

Saturday, July 17, 2010

The Formula Battle

Neocate is an extremely expensive formula. When Kara was first prescribed it, I ordered it from our pharmacy at the hospital after calling around and finding that no medical supply store in the area had it in stock. I got a good deal on it - a case of it (4 small cans) was $125.00. When reading the directions, I found that it's one scoop per ounce, so you use twice as much as you would a regular can. This amounts to approximately one can per day since she needs 24 ounces/day to meet her nutritional needs. I wasn't quite sure how we were going to afford this but it was enough to get us started. Next came the battle of trying to figure out how to pay for it.

I did tons and tons of research on line, read other FPIES blogs and found out from many sources that there is a law in some states that amino acid formulas have to be covered under insurance. Minnesota is one of those states. WHEW. This process of getting the formula and getting it covered has been going on for two weeks and I STILL don't have this formula in my house. We are going on samples that we received at St. Cloud and the case that I had ordered.

I called my insurance company after work that first day. After talking to the rep and being put on hold too many times to count I hung up extremely discouraged. I was told that formulas are not covered. Period. I continued checking the Neocate website, sent some information to our doctor, had some other sources helping me out with this. I received some emails helping me out telling me that it has to be covered by insurance - Kara has the diagnosis to cover it and it would be against the MN law for them to not cover it. Again, on the phone with the insurance company. I was told that our policy is a "self insured" policy through the hospital. Self insured policies don't have to follow those laws apparently. I deal with insurance companies daily at work and battle them all the time but this was personal and I felt like I was at a complete loss. Luckily I was working with a really good rep and she looked and looked, asked question after question and I read the info about the law to her. We hung up so she could dig into it further. A short time later she called back and said it was right in my benefit plan description that it IS covered. Why no one bothered to look there to begin with (including myself!) is beyond me. What a relief, I wanted to reach through the phone and hug her, I was so happy. One more hurdle crossed!

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