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
Read moreKeira and Victoria, Ages 5 and 7
This bill would allow my girls to never have to worry about their formula. Our insurance says it’s covered but we need to meet our deductible. By the time we pay for it the year restarts.
Read moreLibby, Age 5
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
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Zoey, Age 19
Zoey was detected on the newborn screen and placed on diet within 10 days of life. She has used her special protein milk for years and is currently a lovely young girl, attending Southern Oregon University in her second year. The need for medical foods and special protein has been imperative for her.
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Jonathan (4) and Julia (5)
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
Read moreVikram Christian, MD
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.
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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
Read moreJeremiah, Age 7
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
Read moreAlexander, Age 3
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
Read moreEvan, 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
Read moreDanielle, 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.
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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
Read moreJolynn, 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
Read moreAly, 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
Read moreKrew, 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
Read moreRyan, 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
Read moreLevi, 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
Read moreTyton, 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.
Read moreClark, 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
Read moreHannah, 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.
Read moreJackson, 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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