Patients & Providers for Medical Nutrition Equity

Emmalyn, Age 10

Emmalyn graced us with her presence 10 and 1/2 years ago at 35 weeks gestation weighing in at 5 lbs, 7 ozs. and 18 inches long. Our beautiful baby girl was so tiny and perfect, and I couldn’t believe how

Having coverage for medical nutrition through TRICARE has meant everything to me and my family. 2 of my brothers and I were diagnosed with PKU when we were born. We were lucky enough to have been treated with medical formula

Brittany

My daughter, Brittany, was born with PKU and we were able to provide her with the nutritional products that she needed to avoid significant brain development problems. Unfortunately, that is not the case for all children and adults in the US.

Having coverage of these items would be such a relief! Trying to keep up with the strict diet and routine around administering medicine multiple times a day becomes very stressful. On top of that knowing my child can only eat

Having access to low protein nutrition and food is essential to my overall health but primarily my brain and cognitive function. Particularly, heading toward age range 50+. As a first generation PKU patient, I have sustained brain damage as a

Ishaq, Age 5

Employer plan claims that metabolic formula is considered food supplement / baby formula and is excluded from plan.

I never thought that food allergies were “that serious” until all 3 of my children were diagnosed with IGe mediated allergies, EoE, and FPIES. To say that feeding them has been a challenge is more than an understatement. The true

There are a lot of difficulties that come with having a metabolic disorder. Our society revolves around food, and daily accommodations/restrictions must be figured out for family meals, social gatherings, school functions, etc. My daughter is hungry often because of

If we had coverage for Josephine’s medical nutrition it would be such a blessing to not only Josephine but to our family. Because we pay so much in medical needs it has prevented us from spending more on foods that

Not having to worry about paying for medical nutrition would be a huge relief to our family. NO family should have to pay for these things, or should at least have the support of their insurance company! This is a

Brooks, Age 9 monhts

My son was hospitalized at 7 weeks old due to a reaction. At the time it was determined the common cold sent him into near shock. He was also diagnosed with a cows milk protein and soy protein allergy, then

Having coverage for medical nutrition would mean so much to me and my family. As of now, my family pays about $450 out-of-pocket for medical nutrition monthly, this adds up to about $5,400 a year. All of this money going

I’m Elizabeth and I have Classic PKU. When I was five my drs and parents a took me off the diet and formula. I was fine till age 30. That’s when i started suffering from pku side effects and severe

AuchinclossJake

pkunews

CraigAngie

pkunews

KilmerDerek

pkunews

Complete cost coverage would be wonderful, but more importantly for us, awareness of the medical need for this coverage and how it affects my daughter’s growth and development is critical. For 12 years, we have cycled through and fought with

VelaFilemon

pkunews

RossDeborah

pkunews

Kathleen

I am disabled so we are a one-income family (I am unable to work outside the home). I have several diseases and syndromes that cause multiple issues: I am unable to digest gluten, I need a special diet for my

I just want Lily Jo to be able go to school and eat lunch like the rest of the children. I want to know that once again someone doesn’t understand or miss read the list of instructions for the food

This is Eliot and he has PKU. With formula, low-protein foods and an incredible amount of discipline on his part, Eliot is a happy, healthy, thriving 11-year-old. He is a talented swimmer too, having achieved a Junior Olympics time standard

My 2 year old son Ronan has FPIES. He was born healthy but quickly lost to much weight within 2 days after being born and was failure to thrive for the first month of his life. Once I realized at

Teresa

My name is Teresa Boyette I live in Kinston NC I was born overseas where nb knew bout pku tills American soldier discovered it.i struggle everyday with high levels n can never get to normal level like docs want even

At first my dad’s Connecticut Carpenters insurance refused to cover my condition so he took a job with the Milford Board of Education and I have had excellent coverage ever since. I can only imagine how different life would have

Emmalyn, Age 10

Brooke

Brittany

Riverlyn, Age 14 months

Kris

Ishaq, Age 5

Floyd, Age 2

Brielle, Age 12

Josephine, Age 6

Braxton, Age 1

Brooks, Age 9 monhts

Emeline

Elizabeth

AuchinclossJake

CraigAngie

KilmerDerek

Audrey, Age 12

VelaFilemon

RossDeborah

Kathleen

Lily Jo, Age 6

Eliot, Age 11

Ronan, Age 2

Teresa

Sarah