We are extremely lucky to have identical twins that can share the trials and tribulations that come along with having PKU, but the cost to provide both of them with adequate medical foods was so intense, especially during the picky toddler years, that we were overwhelmed about expensive food going to waste. If coverage was gauranteed, they would have been exposed to so many more dishes and flavors, they would have grown up learning how to cook their own meals (again-can’t afford to waste ANY ingredients on experimenting with recipes when a box of pasta is $12), and we would have had a greater sense or normalcy while trying to control the extremely restricted diet. Medical nutrition is just another form of medicine. It needs to be covered.
Our employer-provided healthcare would only reimburse us for $2500 of medical food per child per year. We had to pay up front for the costs.
Patients & Providers for Medical Nutrition Equity
Working to secure access to medically-necessary nutrition for all.