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.

Friday, March 18, 2011

Neocate Coverage: One

This post is one I meant to write about the other night, before all the sickness hit our house!

We switched insurance at the first of the year. Same company, only different group. Brian was offered insurance through his new job and it's a wonderful policy, one that we pay 1/4 of the premium that I paid with my insurance. All around it's a much better policy. Or so I thought.

I knew the fight I had to put up to get Kara's formula covered with the first company but that was nothing compared to what I'm having to go through this time around. Our original denial was something along the lines of "this is a non-covered benefit". This resulted in phone calls back and forth with the medical supply company and our insurance group. I had Kara's doctor write a letter and in this letter it explained how Neocate Jr is Kara's main source of nutrition and right now we are looking at her being on it for another six months before even beginning to think about stopping it. I sent this letter and the original script for the Neocate to the insurance company. Not good enough. It's non-covered, they can only process claims that are covered and it would need to go through the review board.

I emailed the drug rep from Nutricia and explained our situation and wondering if he could send us some more samples. We have some to get by, for a little while but anything could help, was my thinking. He emailed me back telling me that they are very limited to the amount of samples they can send out but did put two cans in the mail for me. He gave me links to some resources on the Neocate website - an example letter for the doctor to the insurance company and a program that they have for assistance, if all else fails. I checked this program over, emailing him back with my questions - We don't qualify for MA, we know this, so do we really have to have a denial? We don't qualify for WIC, we were told that when Kara was first prescribed Neocate, do we still have to apply? He promptly emailed me back apologizing because the assistance program is only for Neocate Infant. They currently have no assistance for anything but the infant. I was immediately irritated. How does a family afford this? Our monthly formula bill, before insurance, is 2000-some dollars. We have to pay about $200-$300 of this because of co-insurance, with our old policy. Also, what do families do that simply CAN'T afford this? It's not really an option at our house of whether or not Kara should be on it. She's on a plateau for weight and height, so we are somewhat back on weight watch. With her recent sickness I'm sure she's only lost more! I'm determined to figure this out.

I went back to scouring the Neocate website and anything else I could find. I knew there were MN State Statutes out there that it was covered under certain diagnoses and Kara's is one of them. I went to THIS website, Childrens Magic (Milk Allergy and GastroIntestinal Coalition) and found everything I needed. Here is the MN link and here is a link to the listing of states with elemental formula coverage for those interested that don't live in MN.

This is written right from the bill:
Required coverage for amino acid based elemental formulas for certain conditions. (a) Every policy, plan, certificate, or contract referred to in subdivision 1 must provide coverage for amino acid based elemental formulas when ordered by a physician for diagnosed cases of cystic fibrosis; amino acid, organic acid, and fatty acid metabolic and malabsorption disorders; IgE mediated allergies to food proteins; food protein induced enterocolitis syndrome; eosinophilic esophagitis; eosinophilic gastroenteritis; and eosinophilic colitis, when those conditions are diagnosed by an allergist, gastroenterologist, or pediatrician. Coverage of amino acid based elemental formulas for enrollees diagnosed with an IgE mediated condition is limited to enrollees age five years and under.

Perfect, right?! No problem. I emailed the insurance rep all of this information stating I can send her the exact links of even (Insurance Company's) letter from their Executive Vice President and Chief Medical Officer stating exactly what the letter says, offering a link to that as well. I was told that our group is self-funded therefor they are federally mandated, not state mandated. I need to gather all the information I can and write a letter to the Board of Trustees to be reviewed.

And so it begins. I have my work cut out for me.

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