Lisa, Age 6

We adopted Lisa last year. Prior to that she was in Florida. Due to the low amount covered in Florida Lisa was on a very limited diet. Once we brought Lisa home to Indiana we had no coverage for food. Lisa diet remained very limited. During her first 6-12 months in our home we had little to no access to buy her medical food. We placed one order ourselves at about $200 for about 8 items. We had estimated we would spend about $400-$500 a month on medical foods if we had the ability. Luckily for us and Lisa she has a little higher tolerance. So we were able to purchase a lot of her foods by buying gluten free in the stores. This was still $200-$300 a month to buy her foods she is allowed in her diet. Due to the lack of coverage Lisa was not receiving the nutrition she should, until her tolerance reached the level that we could buy some foods in the stores. As evidence of this Lisa has grown several inches and 3 clothes sizes in the year and a half she has been in our home. Most families are not this lucky to have a high enough tolerance to allow for this, and then add in that multiple people in the family may have PKU. We have coverage for formula, but it requires prior authorizations not just once but ongoing. We have also been able to obtain coverage for Kuvan but that was also through prior authorizations and took over a month to get the authorization. We do not have coverage for medical foods at all. Our state insurance does not cover it and my husband’s insurance through work does not cover it either.

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