Sutton, Age 4

My FPIES son could only tolerate 1 food (Quinoa) for 3 years without projectile vomiting or having hospitalization level diarrhea. We are burned out trying to get elemental formula covered. We need uniformity on how to ensure children get the nutrition they must have. I’ve turned down multiple jobs because of formula coverage uncertainty. We’ve navigated insurance appeals through three different corporations (both public and private) and it’s an enormous time consuming challenge where the parent is always unsure what the outcome may be. We’re talking about food for your baby that can’t be purchased at the grocery store, it’s a prescription for a child with a feeding tube. Shame on the insurance companies for making this so complicated.
Our health insurance currently pays for about 6 monthly cases of Neocate Splash at 100%, however only under the most expensive option, which is a fully insured Family Plan through United Healthcare with an annual premium of $21,000 (35% of my salary and my wife can’t work due to being a caretaker for the child). Last year, the Enteral Formula was listed as an exclusion, I had to fight through appeals every quarter of 2020, garner benefit exceptions, and negotiate a 2021 plan that covered the formula by literally editing the underwriting of the policy with the health plan broker. Reading between the lines, we won based on State of TX mandate, but it was a very murky process even after the final resolution came to fruition. On top of formula cost, we have Gelmix Thickener needs for the same child. We also appealed that and won underwriting changes, for 2021 to be covered after deductible. In 2020, the thickener costs were an additional $150/mo. until we got through the appeals and had UHC back pay all the invoices that were denied. So you can see how uncovered Formula and Thickener can add up to costs of more than $12K + per year, not to mention any specialty organic food items you have to buy through the open market, it’s all very expensive. We have used Credit Cards and reverse mortgaged our house to pay off thousands of dollars in debt.