New Jersey

Jamieson

Medical foods coverage would allow my son, who has Complex 1 Deficiency and Pyruvate Dehydrogenase Deficiency, to use his Social Security money for something other than very low carb foods and Ketocuisine. My husband and I have employer sponsored healthcare

This is Eliot and he has PKU. With formula, low-protein foods and an incredible amount of discipline on his part, Eliot is a happy, healthy, thriving 11-year-old. He is a talented swimmer too, having achieved a Junior Olympics time standard

While we are fortunate that wic and insurance cover Lucas’s formula because of his medical necessity as well as my persistence with insurance and Drs filing out the right things, etc, many families have a lot of trouble finding help

I was born with CPKU as well as my twin sister. We will die with CPKU too unfortunately. It isn’t anything you have a chance of outgrowing or recovering from. It is the most difficult and most expensive diet to

Julian, Age 13

My employer, though great for everything else, is self-Insured. Due to this fact they are not required to cover my 13 year old’s formula.

We have three beautiful children, two of which have PKU. We spend over $120 a month on medical formula, foods, and medication for PKU. If medical nutrition were to be covered, we could breathe easier knowing our children would receive

I’m a 30, soon to be 31 year old female who was diagnosed with PKU at 1 month old and currently reside in New Jersey. Growing up, formula was always covered by my mother’s insurance since that’s how it is

We are lucky that my husband works for Google and has some of best health Insurance you can get but most are not so lucky. We had to request a GAP exception to get the foods covered which requires clinics

Having medical coverage would mean we could have more of a variety of foods for my son instead of relying on the same foods since we will have more money to spend on fresh foods.

Evan, Age 13

It is extremely difficult to provide my child with enough food to keep him healthy by keeping his blood phenylalanine levels at recommended levels and also keep him from being hungry.

I have two daughters. Only the younger one has PKU. We struggle to find foods that Isabel can eat. Medical foods are incredibly expensive, and our insurance plan, which is otherwise good, is exempt from state mandates which should provide

New Jersey

Jamieson

Eliot, Age 11

Lucas, age 18 months

Kerri

Julian, Age 13

Grace, Age 11

Kristy

Cooper, 10 months

Brayden, 5 months

Evan, Age 13

Isabel