T, Age 5

My son was diagnosed with Food Protein Induced Enterocolitis Syndrome when he was 11 months old. Following scopes, he was later additionally diagnosed with Eosinophilic Colitis as a one year old. With a dangerously limited diet, it became clear that supplementing his nutrition was necessary. By the time he was properly diagnosed, he was extremely sick and we were relieved to find an elemental formula that could provide calories and nutrition he so desperately needed. However, we were stunned by the cost on top of already steep medical bills. The stress of feeding him was enormous. He is now five years old and 89% of his nutrition continues to come from medical formula. It is necessary to keep him alive, relatively healthy, and to allow him any quality of life. However, we fought with insurance for years to cover this life saving nutrition. Numerous medical professionals (allergists, gastroenterologists, dieticians, etc) deemed it medically necessary for him to have access to it, and despite this, we were continually denied medical coverage.

Having coverage for medical nutrition would have made such a significant impact on our ability to care for our son. The financial burden of providing formula each month, on top of the cost of other medical bills, was overwhelming. We have been able to provide what he needs, but it has not been easy. Medical nutrition keeps our son alive. It has never made sense that medical insurance would not cover something so necessary for his life.

Insurance coverage for medical nutrition would have lifted a huge burden. It would allow families without alternate resources to feed their children. It would allow individuals access to life saving nutrition. And it would exponentially improve the quality of life for both patients and their caregivers.

Insurance has refused to cover medically necessary formula for years, despite continual appeals. The self-pay plan provided by our employer was exempt from requirements to cover elemental formula. They do not provide it, nor does the out-of-pocket cost go toward our deductible. We have paid tens of thousands of dollars for something that is deemed medically necessary to keep our son alive. Only recently – within the last month – insurance conceded that it was in fact covered under our plan, and is finally contributing to a portion of the cost.

The Medical Nutrition Equity Act will provide key support for those Americans who rely on medical foods to survive and thrive.