Inborn Errors of Metabolism and Conditions on the RUSP

Silas, Age 4 and Elijah, Age 7

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

My daughter was born with PKU, a rare metabolic disorder. Right now, we are lucky to have insurance cover her formula and medical food, but I worry about the future. If we did not have this insurance, we would not

My son is only 4. He has a whole life of this expensive cost of life, that he had no choice to live, to hover over him forever. He has such a low daily tolerance ( 260 mg of phe

My son who is 15 months old was born with PKU. We have Cigna insurance which covers ZERO low protein medical foods and only covers a small amount of his medical formula. We do not qualify for a state run

My son just turned one. Just over a year ago, our lives drastically changed when we found out our little guy has PKU. Since he’s still small, he doesn’t eat too much yet. However, as he grows and eats more,

Kelly

My pasta costs almost 10 times more than pasta bought at a local grocery store. My medical food should be looked at as medicine, not food. It is a requirement, not a choice.

Zoey, 15 months

Our daughter must take a medication twice a day, drink medical formula and eat special medical foods in order to stay healthy. We are extremely lucky that our insurance covers a large portion but so many families are not as lucky as we are. Medical nutrition IS NOT AN OPTION.

We would be absolutely grateful if our daughter Zoey’s Medicaid insurance would cover her medical food, not just her formula. I believe children with PKU should be able to have both formula and food to be able to be successful

Canaan, Age 2

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Canaan is a thriving, active 2-year-old boy with a rare metabolic condition called VLCAD. He lives with his parents in Georgia. He was picked up on the Expanded Newborn Screening at 6 days old and has done extremely well due

Claire, Age 8

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I want to introduce you to my eight-year-old daughter, Claire. At first glance Claire appears to be a normal 2nd grader. She loves playing soccer, gymnastics, and playing with her brother and sister. She’s silly and funny and just a

Ellie and Zay

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Looking at this brother and sister pair, you don’t see anything besides two happy kids. Thankfully, Zay and Ellie are happy and healthy!! You would never guess that there is anything different about them, that is, until you sit

Christopher, Age 9

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Christopher is a thriving, active 9 year old boy with a rare metabolic condition called LCHADD. He lives with his parents in Atlanta. He was the first baby with LCHADD to be picked up on the Expanded Newborn Screening in

Insurance covers formula (so many cans a month) and also covers up to $5000 of food during the fiscal year July-April. If during the few months we cannot order food and we run out is when i have to pay

Sarah, Age 50

I am one of the oldest patients in the PNW. My parents were told to put me in an institution but they said no and found a pediatrician that put me in the first clinical trial for treatment of PKU.

Insurance covers my daughters medical formula but doesn’t cover her medical foods. If my daughters medical foods were covered it would help us out tremendously! Insurance believes it is not a necessity to cover medical food. Medical food is a

Isabelle has Classic PKU. She is 2.5 years old and can have 3 grams of natural protein per day. For context, one 8 oz glass of milk has 8 grams of protein – 2.5 times Isabelle’s daily allowance. Isabelle relies

Jeff

MSUD powder is expensive – $2,775.00 for about 2 1/2 months of powder and is the mainstay of the diet for an MSUD person. Insurance always denies payment for other protein supplements such as valine and isoleucine which are recommended by the doctor.

My insurance pays for amino acid modified formula but will not provide any coverage for low protein foods. Low protein food is very expensive. Sometimes my daughter has to go without foods she needs because we simply can’t afford it.

We are self-insured. We have had to change health insurances every year for the past several years because the insurance company went out of business, stopped covering our doctors, etc. We have to fight with the insurance companies every time

It scares me to think about our daughter not having access to her medical formula. This isn’t an option for her, her life depends upon it and cost shouldn’t be a barrier for her or anyone living with a metabolic

Inborn Errors of Metabolism and Conditions on the RUSP

Silas, Age 4 and Elijah, Age 7

Rebecca and Stephen

Lelia, Age 2

Kennedy, Age 9 months

Ethan

Owen

Linkyn, 18 months

Luke, Age 4

Nico, 15 months

Jordy, Age 1

Kelly

Zoey, 15 months

Zoey, Age 1

Canaan, Age 2

Claire, Age 8

Ellie and Zay

Christopher, Age 9

Tyler

Sarah, Age 50

Nia, Age 3

Isabelle, Age 2.5

Jeff

Hailey, Age 17

Hannah

Indigo, Age 5