Tessa

When I learned that Medicaid might not pay for my formula and supplies, I was fearful. It would be unaffordable to me to live while paying $3,000/month on medical food. Three of my gastroentelogical conditions are Eosinophilic esophagitis, gastropoeresis, and

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Lena, Age 2

We spend every day planning and preparing. Not only what our daughter will eat today and in the week ahead but also for her future. Her specialty foods and formula will be a life long cost and we worry about

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Chelsie

Coverage for medical nutrition would be a huge blessing to me and my family, and also many other individuals with PKU especially women. I am very blessed to have insurance through my dad that helps cover part of both my

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Scarlett, Age 2

Having coverage would make sure that my baby will always have the food and formula she needs throughout her life to have a healthy brain. We have been consistent in taking very good care of her health and this would

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Jolynn, 3 months

Our PKU story is just getting started. We are older parents now. At ages 45 and 37, we decided to have a baby. We had just gotten married in 2017, and we wanted to have a child together. We have

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Aly, Sam, and Anna

What would having coverage for medical nutrition mean to me, to my family? Everything!! The options of being nutritionally satisfied and not hungry without the extreme cost would completely change our lives. It would change the way we plan every

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Krew, Age 3

When Krew turns 6 and is no longer covered by the state metabolic program, we will have to seriously consider moving to a state with better coverage. It would break our hearts to take him and our other children away

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Ryan, Age 3

Having a child with PKU is extremely time consuming! I am always preparing special food for him and making sure he has what he needs to continue to grow. As we get closer to him turning 5, our only option

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Levi, Age 2

His medical formula/milk costs about $130 a can. He goes through about 5 cans a month. Thankfully that’s currently covered under Medicaid. The other $180 is buying special low protein foods to live within his PKU prescribed diet. There is

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Tyton, 9 months

When I think of our little guy and how important it is for him to follow a structured diet, I don’t want financial limitations to be the reason of failure.

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Clark, Age 3

Clark is 3 years old, and has a twin brother. He is as rambunctious and full of energy as any 3 year old boy could be. He’s the pickier eater of the two, but he’s at the age where he

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Hannah, age 18

I actually have two daughters with PKU. My grocery and monthly expenses is double what the average family pays. Medical bills have made it hard to provide for basic needs for my family.

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Jackson, Sawyer, and Holland

Because of the cost of medical nutrition, we sacrifice many other things. We are blessed to have always been able to afford medical foods, but as these children get older and need to provide for themselves, it is likely they

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Ashley, Utah Metabolic Nurse Practitioner

Our clinic’s desire to bring the best possible care and outcomes to our patients is directly related to their ability to get necessary medical foods. Many who are not able to get medical foods are not able to follow their restricted diets, leading to poor outcomes and disease associated morbidities.

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Claire, Age 12

My insurance company recently denied coverage for my daughter’s formula to treat her PKU. They said she can only have formula coverage for one year of her lifetime. Seriously. Only ONE YEAR! Well, she has PKU, which is a genetic

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Owen

Medical nutrition coverage would make an enormous difference to our entire family. We spent years in school to provide a good living for our family, and yet every month we are faced with the enormous cost of medical foods not

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The Medical Nutrition Equity Act will provide key support for those Americans who rely on medical foods to survive and thrive.