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.
Maple syrup urine disease, Nevada

Sabastian

Maple syrup urine disease, Nevada
Maple syrup urine disease | Nevada | Annual cost: $3000
It is really hard to have a child with a metabolic disorder. I pay over $600.00 per month for insurance coverage, It was prior to Obama Care $1200.00 per month. This does not leave me much funds left over to buy medical Nutrition food, my insurance covers the formula which is so expensive. There...
CROHN'S, Illinois

Jane, Age 7

CROHN'S, Illinois
CROHN'S | Illinois | Annual cost: $3960
Jane is a happy and energetic 7-year-old child who lives with her parents and two siblings in Chicago, IL. She was diagnosed with Crohn’s Disease when she was 2 years old and owes her life to medical nutrition. When Jane was 2 years old she had presented to gastroenterology service for malnutrition, fatigue, anemia...
Michigan, Phenylketonuria (PKU)

Elliott, 1 month

Michigan, Phenylketonuria (PKU)
Michigan | Phenylketonuria (PKU) | Annual cost: $7200
Elliott is just over 1 month old and we were unaware that we were carriers for PKU. Living in Michigan, we recently learned that our insurance does not cover formula or low-protein foods for PKU. The newborn screening is nationally mandated, and PKU is a very closely monitored condition. We were recently told that...
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...
New York, Tyrosinemia

Ethan

New York, Tyrosinemia
New York | Tyrosinemia | Annual cost: $4800
Ethan has tyrosinemia and cannot eat a regular diet. He is restricted on the amount of protein he is able to consume on a daily basis, meaning we need to purchase food and formula to meet his nutritional goals. This is costly and difficult without medical reimbursement. Our company is self employed and does...
California, Inborn Errors of Metabolism and Conditions on the RUSP, Maple syrup urine disease

Carter, Age 5

California, Inborn Errors of Metabolism and Conditions on the RUSP, Maple syrup urine disease
California | Maple syrup urine disease | Annual cost: $1800
Our family has been fortunate enough to have very good insurance coverage through an employer which provides 90% coverage for medical foods. Out insurance covers 90% of medical foods however we have to get the providers approved by the insurance company and they have to re-approve the coverage every 6 months. It was such...
Indiana, Phenylketonuria (PKU)

Jessica

Indiana, Phenylketonuria (PKU)
Indiana | Phenylketonuria (PKU) | Annual cost: $8400
Our 25 year old daughter has always done really well with her PKU diet, especially throughout her schooling! We were able to receive her formula through Riley Hospital in Indiana until this year when we were informed that the state would no longer provide any formula! This has devastated our family and will put...