Patients and Providers for Medical Nutrition Equity Patients and Providers for Medical Nutrition Equity

PATIENTS AND PROVIDERS FOR MEDICAL NUTRITION EQUITY

The Patients & Providers for Medical Nutrition Equity Coalition is a group of patient organizations and clinicians involved with disorders that require medical nutrition to maintain health. We are working to pass the Medical Nutrition Equity Act (S-1194, HB-2587), which will extend the coverage for medical nutrition that Congress passed in 2016 for TRICARE patients to other insured Americans who have inherited metabolic disorders/inborn errors of metabolism and other disorders on the Recommended Uniform Screening Panel, medical and surgical conditions of malabsorption, Immunoglobulin E and non-Immunoglobulin E-mediated allergies to food proteins, inflammatory or immune mediated conditions of the alimentary tract, and other diseases or conditions determined appropriate by the Secretary of Health and Human Services.
EOSINOPHILIC DISORDERS, Georgia

Sarah

EOSINOPHILIC DISORDERS, Georgia
Sarah, who lives near Atlanta, GA, was a healthy baby, born full term to a mom who had a normal and healthy pregnancy. She was breastfed exclusively until four months old. The first time Sarah’s mom introduced rice cereal, Sarah became very ill a few hours after eating. Sarah’s pediatrician diagnosed her with a...
EOSINOPHILIC DISORDERS, Georgia

Cade

EOSINOPHILIC DISORDERS, Georgia
EOSINOPHILIC DISORDERS | Georgia | Annual cost: $5520
Cade, who lives near Atlanta, GA, was diagnosed with a cow’s milk allergy around 5 months old after he developed a rash after drinking a standard infant formula. His pediatrician recommended a standard soy-based formula.  Cade developed hives and a cough after drinking the soy formula for the first time. An allergist diagnosed Cade...
Florida, Tyrosinemia

Vincent

Florida, Tyrosinemia
Florida | Tyrosinemia | Annual cost: $3600
The average child eats what everyone else eats and thrives based upon a combination of nutrition, exercise and genetics. While we can not control our genetic make-up, most of us can "eat right, exercise and enjoy good health" - but for metabolic patients, in particular children...it's not that easy. My little boy just wants to...
Phenylketonuria (PKU)

Annabelle

Phenylketonuria (PKU)
Phenylketonuria (PKU) | Annual cost: $1200
Our daughter is on my husband’s insurance which we consider to be good medical insurance through UHC. We however did try to contact them about receiving coverage for medical foods without any success. We thankfully are in a state that does cover formula. Having medical foods covered for us would help her day to...
Illinois, Medical or Surgical Condition of Malabsorption, SBS

Diego, Age 9

Illinois, Medical or Surgical Condition of Malabsorption, SBS
Illinois | SBS | Annual cost: $12000
Diego is a happy and thriving 9-year-old boy from Chicago, IL with a history of intestinal atresia. This means that part of his intestine did not develop before he was born. He was on total parenteral nutrition (TPN), nutrition through his vein, for a few years. He was then transitioned to just nutrition through...