Patients & Providers for Medical Nutrition Equity

Linkyn, 18 months

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

pkunews

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

pkunews

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

pkunews

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

pkunews

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.

Jane, Age 7

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Jane’s formula cost out of pocket for EEN was approximately $300 per month. Her team of health care providers attempted to obtain insurance coverage but was denied even after appeals were attempted.

Sarah

pkunews

Sarah’s family’s inability to pay for medical nutrition is causing deficits which may impair her growth and cognitive development.

Diego, Age 9

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Diego is a happy and thriving 9-year-old boy from Chicago, IL with a history of intestinal atresia. This means that part of his intestine did not develop before he was born. He was on total parenteral nutrition (TPN), nutrition through

Cade

pkunews

Cade’s Medical Nutrition costs are so great that the family often asks other family members to buy formula instead of birthday or Christmas gifts.

Josiah

pkunews

Josiah is an adorable baby boy who lives with his parents and older sister Middletown, New York. His story starts like that of most babies, with a relatively uneventful birth. Though Josiah was jaundiced (a yellowing of the eyes and

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

Laryssa

Passing this law would mean a lot more money to go around. Better health for me which makes me better for my family.

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

Jane, Age 7

Sarah

Diego, Age 9

Cade

Josiah

Nia, Age 3

Isabelle, Age 2.5

Jeff

Hailey, Age 17

Hannah

Indigo, Age 5

Laryssa