Katherine was only 2 months old when we knew something wasn’t right. It took us 8 more months to figure out what was going on. No baby formulas would work for her. Not regular formula, not soy formula, not even specialty Nutramigen formula would work. We thought starting her on foods would get us somewhere but that made things even worse. Her little body rejected everything. It’s like her body just wasn’t ready to accept anything. It thought all food was a foreign invader and tried to fight it off. After months of tests, lots of doctors visits, loads of GI issues, weight loss and failure to thrive, we finally figured out she had FPIES. (Food Protein Induced Enterocolitis Syndrome) Something even her doctors had never really dealt with. Our only option was Neocate formula and it saved her! It was all she could process for years. The amino acids in this special formula were so broken down that her body couldn’t detect it as a foreign invader. And on it she thrived! Without it, she would have died. Insurance would only cover it if we would have let her get sick enough to admit her into the hospital and then they would have covered it intravenously. Why would they/we ever want things to get to that point? How much more costly is that for our insurance companies? These rare cases need insurance coverage for Medical Nutrition. These little babies, for whatever reason, cannot handle food and are literally allergic to everything on God’s green Earth. It’s terrifying knowing that without this little can of formula, Katherine wouldn’t have made it. It’s not some expensive drug we are asking for, it is the most basic need of FOOD. $700 a month for baby formula was an extreme struggle but we did it for nearly 3 years. So many families would have had no choice but to wait until things got bad enough that they would be admitted to the hospital to start receiving the insurance coverage for it. We need the support for the Medical Nutrition Equity Act now. It’s too simple of a solution to ignore this problem. Insurance would not cover Katherine’s prescription baby formula. They simply said she would outgrow it. She did outgrow it, but she had to be on it for nearly 3 years. She was allergic to everything and would have died without this special formula.
- Sawyer, Age 2