Inborn Errors of Metabolism and Conditions on the RUSP

Amber

I was born in 1990 with PKU. My parents were told to expect severe disabilities. We need these medical foods for our everyday lives. The prices of these foods are outrageous $11.49 for ONE box of medical pasta. These medical

I was diagnosed with PKU late, at thirty days. I have some issues, mainly short term memory, due to my late diagnosis. I graduated from high school last year and just finished my first year of college. Without my medical

Ally was diagnosed at ten days with brain growth affecting diet based treatment PKU. She has been a resident of SC since she was six weeks old. Thanks to medical food and strict diet adherence she is a bright, lively,

Hi, I am only 5 years old now and my parents struggle to provide the right food for me for my special diet. Coverage would mean now and when I get older I wouldnt have to pay for my food

Hello, I am the mother of a ten-month-old phenylketonuria patient. Having more help to get instant needs would be amazing. With having it three kids and only the youngest has PKU it has been hard to try and get just

Having medical food coverage would mean that I would not have to worry about double insurance for our daughter, and fighting insurance companies and the billing department at our local children’s hospital about making sure they run the claims through

Trying to keep your child healthy and also full without medical food is nearly impossible. The number of times you have to say “no” to a PKU child and the constant worry about running out of foods they can eat, or whether you will be able to afford it

Having the medical nutrition covered by our insurance would grealty imporve the options and the cost of the food that Clayton would be able to eat since he is only allowed to have 5g protein a day. With him only

Will, Age 14

I am 14. I need my formula to live and grow. I am an athlete and a good student. My formula and low protein foods are critical for my brain and body.

If Brandon was able to get his medical food covered we would take advantage of ordering from Cambrooke foods company more often. His favorite food is pancakes and we would absolutely have his mix in hand! We would be able

Hattie (20 months) and Maxine (6 months)

We have two beautiful daughters, Hattie (20 months old) and Maxine (6 months old) who were diagnosed with PKU at birth. Because of their PKU both girls require medical formulas in order to grow and develop on par with their

Ellis, Age 12

We have spend hundreds of hours on the phone, writing letters and working with her doctors for our insurance to provide the medical nutrition needed for Ellis to stay at her healthiest.

My name is Sarah. Im 24 and I have classical PKU which means my enzyme in my liver has a hard time fuctioning breaking down phenylalanine. I’ve always had struggled with keeping my phe levels in range. Which when they

I will begin with saying there are others that are in far greater need of medical nutrition coverage than myself. I have been brought up in tremendously positive circumstances and have the ability to partially cover my medical necessities. Some

Coverage for medical nutrition for myself would mean freedom from worry and security that I will continue to be my best self. Without coverage for medical nutrition it is virtually impossible to be compliant with my diet. When I cannot

Medical Nutrition coverage will ensure my son gets the formula he needs to grow and develop normally. I have been fighting for accurate formula coverage his entire life. The insurance issues have not been resolved and he is almost 5.

While we are very fortunate to have insurance that can help us with the costs, there is still a great financial strain associated with the cost of providing nutrition for our son. Additionally, the stress and anxiety over his future

My son has classic PKU and his food options are very limited. We rely heavily on medical foods to fulfill his dietary needs. It is a struggle to have the insurance company provide coverage for the medical formula and foods.

We have three beautiful children, two of which have PKU. We spend over $120 a month on medical formula, foods, and medication for PKU. If medical nutrition were to be covered, we could breathe easier knowing our children would receive

Hi, I’m Pat and this is my son, Isaac, and husband/caregiver, David. Isaac is high functioning Autistic. I’m Type 2 diabetic. My husband recently has been hospitalized for pulmonary edema. My family is in and out of hospitals a lot

We adopted our beautiful daughter Zoe three months ago from China. We did extensive research on PKU and prepared ourselves the best we could to meet her needs. We live in TN and I was happy to see that formula

When I moved to the West Coast by myself in 2014, I had to learn everything on my own like finding a clinic and handling coverage. I had insurance companies outright deny me coverage for my formula so much that

Sue, Michigan Dietitian

pkunews

When patients’ mental health deteriorates because they cannot follow their diet, they often lose their job and get incredibly frustrated with the system.

Jennifer

pkunews

The amount of medical debt my family has had to trudge through, during my 43 years of living with PKU, has been financially crippling. I am grateful for medical foods, they allow me to be a valuable citizen, and member

Ashley, Utah Metabolic Nurse Practitioner

pkunews

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.

Inborn Errors of Metabolism and Conditions on the RUSP

Amber

Reagan

Alexandria, Age 16

Saif, Age 5

Donovan, Age 11 months

Patti Sue, Age 1

Aidan, 9 months

Clayton, Age 4

Will, Age 14

Brandon

Hattie (20 months) and Maxine (6 months)

Ellis, Age 12

Sarah

Allen

Nicole

Johnny, Age 4

Hudson

Deckard, Age 1

Grace, Age 11

Pat and Issac

Zoe, Age 4

Kayla

Sue, Michigan Dietitian

Jennifer

Ashley, Utah Metabolic Nurse Practitioner