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Anyone have good luck getting their formula covered by insurance for FPIES?  We ate the cost for our first son who is on elecare jr but when our second son was diagnosed he never took to elecare and did better on Neocate Jr.  Bos Childrens has maintained that insurance should cover both children and it has gotten to expensive to just pay out of pocket.

We have Tufts of RI and they have given us some push back due to codes... supposedly we will hear more this week.  I also have access to blue cross coast to coast through my work, but dont want to switch of we dont have to.

Thoughts? Anyone have success w/ coverage for formula?


Mark & Julia

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We tried for both my FPIES kids to get formula covered by insurance. They are both breastfed but we tried supplimenting with formula when weight and height stalled.

Our insurance refused to cover formula because it is "over the counter," unless the patient is tube fed and formula is primary nutrition source. 

Both kids are using Kate farms pediatric peptide, although my older I dilute with ripple milk. It's expensive. I search eBay and special needs sites for people getting rid of it. 

Thank you all for your reply.  It's taking me a little while to get back to you because both of my kiddos have been sick since December 23rd what's included One hospital stay. 

We have made a little bit of Headway with tufts / Boston Childrens / and Cambridge Medical.  It seems that after medical codes were changed around, we now qualify for coverage.  Idk if there will be a co-pay yet and we are still awaiting our first covered shipment, but things seem to be in alignment.

Orangefox... the specific problem that we ran into with insurance was that the hospital was diagnosing fpies but in Rhode Island there is no specific code for fpies so Boston childrens had to code out what symptoms where had by the boys. Perhaps if you have your doctor contact the insurance and change around the codes it might work out for you.

Thank you all again,

Mark & Julia

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