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, Pennsylvania

Jeff

Maple syrup urine disease, Pennsylvania
We purchase medical insurance from employer. Employer is self insured so not subject to the Pennsylvania Medical Foods Act. MSUD powder covered partially. Employer is self insured so not subject to the Pennsylvania Medical Foods Act. Other doctor prescribed amino acids not covered. Previous insurance management firm required year proof that our son was still...
New Jersey, Phenylketonuria (PKU)

Evan, Age 13

New Jersey, Phenylketonuria (PKU)
New Jersey | Phenylketonuria (PKU) | Annual cost: $3600
We are a low income family. I am a single mother and I provide school with low protein lunches 5 days a week. It is extremely difficult to provide my child with enough food to keep him healthy by keeping his blood phenylalanine levels at recommended levels and also keep him from being hungry....
3-Hydroxy-3-methyglutaric aciduria, Arizona

Ian, Age 12

3-Hydroxy-3-methyglutaric aciduria, Arizona
Having better coverage will will certainly lower our costs. To have to pay escalating insurance premiums plus the cost of formula and foods is outrageous. No child or adult with a metabolic disorder should have to go without these items due to cost. Currently I pay $1700 per month for our insurance premium. My sons...
Oklahoma

Ezra, Age 3

Oklahoma
Oklahoma | Annual cost: $4200
The formula is very expensive!...My Grand-daughter and her husband both work and with all the bills cannot afford the formula (which is relevant in this disease)...Please everyone who reads this..sign the paper for our government to help with this !...these kids and adults will not ever get to eat some of the foods we...
Phenylketonuria (PKU), Texas

John

Phenylketonuria (PKU), Texas
I have avoided purchasing the medical food I needed because we can’t afford the food. I make do with limiting myself to what I can purchase through my local grocery store. Being able to buy medical food would allow me to eat more and get the calories I needed rather than limiting...
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...
Georgia, Long-chain L-3 hydroxyacyl-CoA dehydrogenase deficiency

Christopher, Age 9

Georgia, Long-chain L-3 hydroxyacyl-CoA dehydrogenase deficiency
Christopher is a thriving, active 9 year old boy with a rare metabolic condition called LCHADD. He lives with his parents in Atlanta. He was the first baby with LCHADD to be picked up on the Expanded Newborn Screening in 2008, and has done extremely well due to medical nutrition. When Christopher was diagnosed with...
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...
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...