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.
Phenylketonuria (PKU), Washington

Aiden and Aaron, Ages 5 and 3

Phenylketonuria (PKU), Washington
Phenylketonuria (PKU) | Washington | Annual cost: $2400
I have two boys with Phenylketonuria, ages 5 and 3. We moved recently from California to Washington state. In California we had state insurance coverage and it covered foods like pasta, bread mix, cake mix, tortillas. In Washington insurance companies are not required to cover any of this so approximately $1,000-2,500 worth of food...
Maple syrup urine disease, Washington

Indigo, Age 5

Maple syrup urine disease, Washington
Maple syrup urine disease | Washington | Annual cost: $4800
It scares me to think about our daughter not having access to her medical formula. This isn’t an option for her, her life depends upon it and cost shouldn’t be a barrier for her or anyone living with a metabolic disorder. It’s not an alternative lifestyle, her life depends on...
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...
Homocystinuria, Illinois

Danae

Homocystinuria, Illinois
Homocystinuria | Illinois | Annual cost: $18000
Homocystinuria comes with the risk of heart attacks and strokes when not on diet. In college it was impossible to afford follow the diet while trying to afford rent, utilities, tuition, health insurance, other medication, car insurance and other bills. Not to long after graduating I suffered a blood clot to the radial artery...
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...
New York, Tyrosinemia

Zoey, 15 months

New York, Tyrosinemia
New York | Tyrosinemia | Annual cost: $1200
When our daughter was diagnosed with an Inherited Metabolic Disorder at 10 days old I remember the frantic whirlwind of calls, emails, faxes and paperwork to make sure she was on my husband and my insurance plan. Not only were we trying to absorb what was happening and learn about our daughter's diagnosis, we...
Malabsorption due to liver or pancreatic disease, Medical or Surgical Condition of Malabsorption, New York

Josiah

Malabsorption due to liver or pancreatic disease, Medical or Surgical Condition of Malabsorption, New York
Josiah is an adorable baby boy who lives with his parents and older sister Middletown, New York. His story starts like that of most babies, with a relatively uneventful birth. Though Josiah was jaundiced (a yellowing of the eyes and skin) in the nursery, his family was told it would go away – after...
Pennsylvania

Mark, Age 61

Pennsylvania
Pennsylvania | Annual cost: $7500
So far Mark's medical nutrition has been covered after the out of pocket maximum is met (this year it is $7,450). But we never know year after year if it will be or not and January is always stressful not knowing if will be or not. Mark is an 18 year tonsil cancer survivor....
Illinois, Phenylketonuria (PKU)

Kelly

Illinois, Phenylketonuria (PKU)
Illinois | Phenylketonuria (PKU) | Annual cost: $15000
Having medical nutrition covered by the government would make life a lot more simple. I would have less stress and more peace of mind knowing that I don't owe a doctor or insurance company or food company an astronomical amount of money in which I may need to take out a loan. Having medical...
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...
Homocystinuria, Nevada

Pamela

Homocystinuria, Nevada
Homocystinuria | Nevada | Annual cost: $3600
It would mean so much to have the medical nutrition equity act passed. I have a diagnosis of homocystinuria which was discovered very late in life. I have suffered from strokes and blood clots in my lungs because of it. Although I currently have coverage through our insurance, it is always a fight to...