Patients & Providers for Medical Nutrition Equity

Sutton, Age 4

My FPIES son could only tolerate 1 food (Quinoa) for 3 years without projectile vomiting or having hospitalization level diarrhea. We are burned out trying to get elemental formula covered. We need uniformity on how to ensure children get the

Nora was born tox positive to several drugs and social services moved her to my home to be with her bio sibling for adoption. She has had severe GERD and food allergies from birth. She continues to have Failure to

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sarah

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Medical nutrition coverage would mean FREEDOM. Freedom from worry and the freedom to be able to make normal life choices such as what career to pursue and where to live without the fear of suddenly losing access to medical formula

I have phenylketonuria and am required to eat low protein foods and drink a formula supplement daily FOR LIFE. Without these items I would have severe mental affects from high Blood protein levels or malnutrition. Due to the pandemic, I

My son’s food allergies were so severe, he was reacting to the food I was eating through breastfeeding. He had blood in his stool for several months and stopped gaining weight until he was diagnosed and prescribed an elemental medical

I have two sons and only Leo has PKU. We maintain a low protein diet for Leo, but due to the high cost of low protein medical foods, we spend a lot of our time cooking and finding alternative meals

I am a 26 year old with PKU. I am pregnant with my second child. Maternal PKU is so important because being off diet can cause harm to my unborn child. Having coverage for my medical nutrition would be financial

Having medical nutrition coverage would mean that I get to live my life without worrying. I’ve had to move to different states in the past for school and work, and my first thought is always, “Will my formula be covered?”.

Katherine, RD

pkunews

As a nutrition expert, it should be up to me, the family and the healthcare team to decide on how best to treat these children and if nutrition is the ideal treatment, then it should be included as part of the child’s covered treatments. It is frustrating to have to delay or change care if nutrition therapy is not covered. This can worsen illness and also cause undue stress and harm to the child and their family.

Tyler, MD from Idaho

pkunews

I am a pediatric gastroenterologist and treat children with a variety of digestive conditions that require medical nutrition. I often see patients whose digestive conditions mandate that they be on special diets or supplements and yet these diets cannot be

Caroline, RD

pkunews

As a provider, I know what is best for these patients and when covered, the results (i.e. improved absorption, reduced eosinophils, improved growth and weight gain) are nothing short of incredible.

Noah, Age 6

Coverage for medical foods would mean everything.

Our BCBS does cover the Medical Formula for my daughter and does reimburse for low protein modified foods but this is never without a struggle. Michigan BCBS has their own form to submit for reimbursement for modified foods however it

Annabelle, Age 4

Having medical food coverage would expand our daughter’s ability to try new and different foods. Her diet is supervised by a metabolic team of healthcare professionals at a specialized genetics/metabolism clinic in our state. This is not just for fun or because she wants to eat a certain way, This is to help her grow and develop properly.

Justin, Age 22

My husband has been trapped at that job his entire career because of the formula coverage for our son, that we can’t afford to walk away from. We have 3.5 years before he ages out of coverage. It is $24,000/yr, for life. The one formula that works for him is not covered by medicaid in our state. We are almost retirement age and plan to work as long as we can to pay for formula.

Liam, Age 1

Children without access to formula and medical food struggle to keep their levels stable and deal with a myriad of issues from attention issues to brain damage.

I was born with CPKU as well as my twin sister. We will die with CPKU too unfortunately. It isn’t anything you have a chance of outgrowing or recovering from. It is the most difficult and most expensive diet to

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),

Sutton, Age 4

Eleanor, Age 7

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Leonard, Age 3

Melissa, Age 26

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Katherine, RD

Tyler, MD from Idaho

Caroline, RD

Noah, Age 6

Bethany, Age 19

Annabelle, Age 4

Justin, Age 22

Liam, Age 1

Kerri

Alexander, Age 3

Denver, Age 12

Colton, Age 6

Tessa

Tyler, Age 7

Evan, Age 8

Nolan