After seeing blood in the diaper of our 5 week-old son, we rushed to the Pediatric ER at Presbyterian Hospital in Charlotte, NC. The baby was put through a series of diagnostic tests including x-rays, blood test, and a rectal exam. He was given an IV for dehydration and we were admitted overnight into Hemby Children’s Hospital for observation. In the morning, our son was diagnosed with a milk protein allergy. In the following months, we watched our new baby fall apart daily. He cried constantly, arching his back and drawing up his legs in response to severe gas and stomach pains. After trying a breastfeeding elimination diet and then various hypoallergenic formulas, we did not know what to do. Our son was unable to eat or sleep without painful interruptions caused by his allergy. Because he was constantly tired and hungry, he was unable to focus, grow, learn, or thrive. After numerous visits to the pediatrician and various pediatric gastroenterologists, we were finally given samples of an amino acid-based formula for our son to try. The results were miraculous. Within 3 days, he was sleeping like a baby should, and the crying and writhing had been replaced by smiles and cooing. Our son had found the only food he could stomach. Though it costs almost $500 per month, it is well worth it just to see him happy and comfortable! We are currently in our third round of the appeals process for insurance coverage of the medically necessary infant formula--having already had enough trouble paying for the hospital stay, diagnostic tests, and doctor visits. Help us make this less of an ordeal for future children with severe milk allergies and their families. Please join us in the fight to enact legislation mandating North Carolina private insurance companies cover amino acid-based elemental formulas. National statistics indicate that around 2.5% of children have some sort of allergy to milk. It is estimated that 1-2% of those children with milk allergies have such a severe allergy that they require amino-acid based formula. For that small group of children (less than .2%) in the US, elemental formula is the only food they can digest. Though vital and lifesaving, amino acid-based elemental formulas are made of non-allergenic proteins, not pharmaceutical ingredients. Because the FDA does not classify the formula ingredients as drugs, insurance companies deny any “medical necessity” and do not cover costs. Currently, the WIC (women, infant, children) and state Medicaid programs cover the formula. But, for hard-working, middle class North Carolina families who earn too much to qualify for state aid, the costs of these formulas can be crippling. The average cost of an amino acid-based formula is over $5,900 per year (based on estimated need of 14,500 ounces per year). That figure comes out to over 13% of the median household income in North Carolina ($44,772 annually, based on current US Census Bureau statistics). Concern over statewide increases to insurance premiums is understandable, but unfounded. One study estimates--because so few children are affected each year--that coverage of the formula would increase insurance premiums by 1.6 cents per family per year. However, this study does not account for the savings when doctors can simply prescribe amino acid-based formula instead of running a battery of diagnostic tests to understand the degree of if a child’s milk allergy; or the savings when enteral feeding tubes and prolonged hospital stays can be avoided by simply starting a child on the specialized formula at the first sign of an allergy. Twelve states already mandate private insurance coverage of amino acid-based elemental formulas. They are: AZ, CT, IL, ME, MD, MA, MN, NH, NJ, NY, RI, & TX. Please help us to add North Carolina to this important list!

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