I was born in 1990 with PKU. My parents were told to expect severe disabilities. We need these medical foods for our everyday lives. The prices of these foods are outrageous $11.49 for ONE box of medical pasta. These medical foods and medical formulas protects us. It is bad enough that PKU is NOT seen as a disability for SSI let alone not even being able to afford our medical foods. It is very important that we try to get coverage for medical foods because when 1/4 cup of rice is all you can eat it is hard to become full and not hungry. With the medical pasta we can have more than 1/4 cup. PKU people are hungry all the time because we cant eat like normal people. I would love to see people live off of 10 grams protein a day sometimes they even drop it to 5 grams of protein a day. It is just not possible that is why it is so important to get these medical foods covered for all PKU patients. My insurance covers medical formula but not medical food.
- Charlotte, Age 13