Patients & Providers for Medical Nutrition Equity

Alice, 1

Medical nutrition coverage has significantly reduced the cost and strain on our family’s income for our daughter’s food. We spend hours making her special recipes a week and approximately $150 extra a month in order to buy specific gluten free

Meet Hailey…our second child and first PKUer. We thought having one child was expensive but having another with PKU is an entirely different ball game. See, Hailey is doing well; thriving in all aspects of life with much credit due

When my son, Draegen, was younger, he was on Medicaid. It covered his formula, but only a very specific kind. He ended up burnt out on it and it became more and more difficult to get him to drink it.

Our sweet Gavin’s future depends on this crucial coverage. Without insurance coverage for his food & formula, we would be unable to afford our house payment. This coverage is essential to ensuring that he has as bright a future as

It would relieve a lot of stress and tension in our household. Having to pay out of pocket for my son’s formula has brought me to tears more than once. I make $17/hour. A can of his formula costs about

We are fortunate that in the State of Ohio our daughter’s medical formula is covered. Because she is a responder to Kuvan, we have been able to rely less on specialty low-phenylalanine foods but do still purchase low protein pasta.

When Emma was first born my husband worked at Avaya and we had Aetna. They refused to cover her medical formula despite appeals with letters of necessity from her Doctors. My husband changed jobs and second company insurance also refused

My son Denver appears to be a normal ordinary 10 year old boy until he wants something to eat, gets sick, or his PHE levels are too high. When he wants something to eat it must be low protein therefore

Our Emily was diagnosed at 9 days old with Phenylketonuria (PKU). During the last seven years of her life we have had insurance completely deny her medically necessary formula after the age of 12 months. We have appealed, fought, had

My son was a week old when we got the news that he has PKU. I had no clue what this was and didn’t realize just how serious it was until it was explained to me as do most people.

Gian, Age 2

I am currently a foster mom to a 2 year old with PKU. We live in the state of NC where medical food is not covered. His food is very expensive & without coverage, it is nearly impossible to buy.

Our insurance covered the medical beverage for one year and then stopped. This was so terrible because we had no notice and the insurance company acted like it wasn’t necessary. They cover the Kuvan medication which gives him more protein

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.

As all parents who experience it, we were overwhelmed once we got the call, at 5 days of age, that our daughter Maeve had been diagnosed with a rare metabolic disorder requiring a strict medical diet in order to prevent

Having coverage for medical foods that my daughter requires is necessary for her success of her diet management! Without the only known management for PKU (low protein diet) my daughter would incur severe neurological issues and inability to complete daily

We reside in Kansas. Our son Jackson was born June 12, 2012, 5 days later the State of Kansas called with positive results for PKU from Jackson’s newborn screening test. I initially worked company that covered medical nutrition until Jackson

Michelle

I was able to carry two successful pregnancies to term and have to very healthy children as a result of having coverage of medical food coverage. Without medical food coverage, my life would not have been the same.

I am 36 years old and was diagnosed with PKU when I was 14 days old. At the time may parents were told that I could be taken off the diet at age 18 and that I might not be

Meet Adler! He is an amazing little boy that lives in rural Missouri with his Mom and Dad. Adler was diagnosed with PKU shortly after birth. With the help of his Mom, Dad and extended family his PHE levels have

When our firstborn was just 7 days old, we received a call to rush him to the hospital. He had tested positive for PKU. We, including extended family, had never heard of PKU. The beginning of our journey was filled

My name is Christy and I am a mother to 2 beautiful kids, both with PKU. My daughter, Rebecca, is 21 on Sunday and my son, Stephen, is 18. My entire world changed on June 14, 1997. That is the

For our family, the most meaningful part of medical nutrition coverage would be hope and confidence for the future. We have coverage for the moment (after going through the petitioning process with our insurance), but I worry what could change

Kennedy was diagnosed with PKU at 5 days old. Left untreated this disorder can lead to serious brain damage. While we are very fortunate to have Kennedy’s formula covered, we will be burdened with hundreds of dollars in medical food

Ethan has tyrosinemia and cannot eat a regular diet. He is restricted on the amount of protein he is able to consume on a daily basis, meaning we need to purchase food and formula to meet his nutritional goals. This

Having medical coverage for formula and medical foods would be an enormous relief. Even though Owen is only 12, I have worried since birth about how he will maintain insurance coverage as an adult. How will he be able to

Alice, 1

Hailey

Draegen, Age 18

Gavin, Age 2.5

Robert, Age 11

Christiana, Age 11

Emma, Age 10

Denver, Age 10

Emily, Age 6

Oliver, 10 months

Gian, Age 2

Drake, Age 3

Brayden, 5 months

Maeve, Age 8

Isla, Age 5

Jackson, Age 6

Michelle

Jessica, Age 36

Adler, Age 3

Silas, Age 4 and Elijah, Age 7

Rebecca and Stephen

Lelia, Age 2

Kennedy, Age 9 months

Ethan

Owen