Liam, Age 5

Liam has struggled with GI issues, food avoidance, and maintaining growth since he was born, but the issues intensified once we tried to start introducing solid foods. His pediatrician told me time and time again that we just needed to be patient, but things continued to worsen. We have spent the last 4 years struggling to deal with his symptoms before he was diagnosed with EoE five months ago. In addition to following a restrictive diet since 16 months old, his dietitian and allergist advised that he eliminate all citrus, peanuts, and tomato this past fall. Then, three months ago, we had to eliminate potato, which has been very challenging since potato starch is an ingredient in most gluten free products. As we have had to continue to cut foods, thereby increasing the frequency he is eating a small variety of foods, we have noticed his symptoms reemerge more quickly and with much more intensity. He has been on a steroid treatment for the past three months, but his specialist team has advised that following an elemental diet will most likely be our next course of action. Due to my husband’s military service, we have not always been able to have and maintain the level of quality medical care that we would want for our son. Knowing that medical nutrition would be fully covered, without question, would be a huge burden lifted off our shoulders as we very soon may not have any other options if Liam is to ever have a pain free day in his life and actually grow. We have TRICARE, and I have been told it is fully covered by our insurance as long as it is filed as a separate referral and includes very specific terminology. However, since he has not started yet, we don’t have any experience with it firsthand.

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