By State

Alexander, Age 3

Imagine going to the store for peanut butter and the shelf tag says it’s $9.49 for 8 oz that will only last less than a week. 8 oz. is about 8 servings. Bread costs $13.99 a loaf. Kids love peanut

Having coverage for the food and formula would be absolutely amazing for our family. I would be able to make a career move making more money that would benefit us as I am a single mother. I have never been

Colton is almost 7 years old. He was born at 30 weeks and lost 2/3 of his small bowel due to a mid-gut volvulus. He has been on an elemental formula for malabsorption nearly 7 years because of having Short

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

Tyler began getting sick at age 4 eating normal food. We went through three large healthcare institutions in NC where we live for help. After 1 year of illness, our second medical institution finally scoped the esophagus to find EoE.

Our 8 yr old has been on EleCare/hypoallergenic formula since he was 9 months old. His first 3 years of life, he went from no safe other foods to 3 kinds of fruits and beets that he could eat. Slowly,

Our Family Story: During the spring and summer 2019, we struggled to understand what our 10-month-old son’s, Nolan, medical conditions were. For several months had been dealing with severe medical issues. He had been to his primary care physician (PCP),

Briana was born in 1989 and there were not many supports for her then, both in medical assistance or low protein supplement and food choices. When we moved from Texas back to Oklahoma when she was a few months old

Having coverage for medical nutrition would definitely help our family financially ($500+ a month ends up taking a toll on the bank account), but would also give us peace of mind that our daughter will not have to fight for

We have 2 kids with PKU, so having coverage for medical nutrition would mean the world to us. My husband switched jobs for better medical coverage and we lived for 18 months with full medical food coverage. It was like

Vikram Christian, MD

pkunews

As a pediatric gastroenterologist, I take care of children with diseases of the digestive tract. Medical nutrition is often the treatment of choice for these conditions. Insurance denial is particularly frustrating in the case of a motivated child who intends to consume the prescribed nutrition by mouth but is told that he/she would require a feeding tube to have this therapy covered by insurance.

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

Our family is currently affected by having to pay out-of-pocket for medically necessary formula (Elecare, Jr) for our now 7-year-old son. Jeremiah was diagnosed with Eosinophilic Esophagitis (EoE) back in June 2013. Prior to his diagnosis, he was very sick

Xander was diagnosed with MSUD at 4 days of life. We were in a hospital that did not know how to treat, was not prepared to treat, and mistreated the disease. At 11 days of life, the geneticist finally reached

Evan, Age 8

I am aware that we are some of the lucky ones in that we have great medical coverage via TRICARE. Others should be afforded the same opportunity for coverage

Danielle, Age 3

At 1.5 years old she weighed 14 pounds and had g-tube surgery. She’s 3 now and has never eaten food.

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

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

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

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

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

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

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

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.

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

By State

Alexander, Age 3

Denver, Age 12

Colton, Age 6

Tessa

Tyler, Age 7

Evan, Age 8

Nolan

Briana

Libby, Age 5

Jonathan (4) and Julia (5)

Vikram Christian, MD

Lena, Age 2

Jeremiah, Age 7

Alexander, Age 3

Evan, Age 8

Danielle, Age 3

Chelsie

Scarlett, Age 2

Jolynn, 3 months

Aly, Sam, and Anna

Krew, Age 3

Ryan, Age 3

Levi, Age 2

Tyton, 9 months

Clark, Age 3