Liam, Age 1

Right now my husband and I are financially stable and we can afford the almost $100 per month we spend on medical formula and the additional medical food costs. However, we’re afraid for the day that our now 14 month old Liam will have to have his own insurance and pay for this himself. A large number of adults with PKU go off formula and diet as adults and insurance and cost should not be a reason. We have great medical care and spend almost $100 a month on formula. I can’t imagine being able to afford that as a 26 yr old riddled with student debt, rent etc. There are way too many parents and children who can’t afford medical food and formula. They try to buy it out of pocket if their insurance costs are too high or they have no insurance and the cost can be astronomical. Medical food and formula are not a luxury. They are a necessity. Children without access to formula and medical food struggle to keep their levels stable and deal with a myriad of issues from attention issues to brain damage. Please ensure those with these disorders can stay healthy. Our son gets a case of formula per month which costs $92 (that’s 10% of the actual cost if we didn’t have insurance). This formula keeps his phe levels stable preventing brain damage. His medical food orders are about $300 a month and after deductible we get up to $5000 of medical food covered a year. This sounds like a lot, and it is for a one year old but not for a 10+ year old who eats so much more.