By State

Ian, Age 12

On top of the cost of formula, I have to buy specialty foods amounting to about $200 per month plus regular grocery store items for my son, fresh fruits and vegetables. Plus groceries for rest of family. My son will then age out of coverage per current policies. I worry about what will happen, will he have an occupation that will allow him to manage the cost?

Joey

Even in Massachusetts, to get coverage for formula and food it is an absolute nightmare collaborating with insurance companies, pharmacies and clinics. I have fear each month that there will be an issue with something and I will not be able to get food or formula for my son because of a paperwork mistake or miscommunication between providers.

Kathy, Age 55

I’m almost 55 with PKU need I say more… okay was a sample for Kuvan and Lanephex. Amount others like 1st Pku camps!

Elliott, 1 month

To have Elliott’s formula and medical nutrition (low protein foods) covered by insurance would be a huge relief. The formula is extremely expensive and we haven’t even gotten to the foods yet, but I’m sure those are not cheap either.

Having full and mandatory coverage would release a lot of strain on our annual budget and give us peace of mind. Trying to get coverage in Georgia has been very stressful. We have had years of zero coverage. We had

Our family is very grateful that Laila’s PKU was discovered with newborn screening. Once we were able to overcome the fear and shock of her diagnosis, the next step was to learn about what we could do to keep her

Sabastian

It is really hard to have a child with a metabolic disorder. I pay over $600.00 per month for insurance coverage, It was prior to Obama Care $1200.00 per month. This does not leave me much funds left over to

My husband and I opted to pay more out of pocket each month, for our portion of the monthly insurance premium to assure that Addison would have the best coverage offered. Even after we pay our monthly premium, we must

John

I have avoided purchasing the medical food I needed because we can’t afford the food.

These medical foods and formulas are not “optional” or “nice to have” for those of us with PKU andsimilar metabolic disorders. They are like insulin for a diabetic. I cannot walk into a GNC and buy formula off the shelf.

Jessica

Our daughter has even told her dad and I that she thinks at this point, she will choose not to have children due to the cost of her medical foods!

Juliana

It would be such a relief for me to know that my daughter would always be able to afford her formula and medical food.

Our daughter is on my husband’s insurance which we consider to be good medical insurance through UHC. We however did try to contact them about receiving coverage for medical foods without any success. We thankfully are in a state that

It would mean so much to have the medical nutrition equity act passed. I have a diagnosis of homocystinuria which was discovered very late in life. I have suffered from strokes and blood clots in my lungs because of it.

For now while she is a baby our insurance covers some of her formula, but none of her medically necessary supplements and none of the formula or low protein food when she is older. She will never have chic-fil-a with

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.

My insurance provides coverage of Ashlynn’s PKU metabolic formula, ONLY after we have met her deductible. They cover NO medical foods for her which are extremely expensive. They do not fully cover her mandatory blood tests, only partial until we

The average child eats what everyone else eats and thrives based upon a combination of nutrition, exercise and genetics. While we can not control our genetic make-up, most of us can “eat right, exercise and enjoy good health” – but

My 3 year old daughter has classical PKU, with coverage for medical nutrition she would be able to eat more food instead of being hungry so often. Without medical nutrition she is very limited to the foods, she can eat,

Audrina, Age 8

The metabolic disorder itself is such a challenge in learning and dealing with and then to have to worry about the funds to get the food, formula and medical care she needs is another level of added stress.

I recently became ineligible for the Medicaid insurance I was on, I make just a little over the cap for income to be eligible. While I was on this insurance, my Formula supplement was covered but medical foods were not

This precious picture was taken after the birth of my 2nd who also was diagnosed with PKU right after birth. It symbolizes the bond that these 2 sisters will always have..going through life facing all the food and medical issues

My story is a sad one. I am a parent of a PKU individual. My son was born June 17, 1985, diagnosed with PKU at 3 weeks of age. He was immediately started on a PKU formula and progressed to

My son is currently ten years old. When he was first born, his father’s health insurance through work wouldn’t cover this low protein foods. Thankfully, the formula only was covered through a program. I met a young family of a

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

By State

Ian, Age 12

Joey

Kathy, Age 55

Elliott, 1 month

Walker

Laila, Age 12

Sabastian

Addison, Age 4

John

Les

Jessica

Juliana

Annabelle

Pamela

Zoey

Evan, Age 13

Ashlynn

Vincent

Riley

Audrina, Age 8

Christopher

Brynnslee and Brekelle

Jordan

Declan

Isabel