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.
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...
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...
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...
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...
New York, Phenylketonuria (PKU)

New York Teen, 17

New York, Phenylketonuria (PKU)
New York | Phenylketonuria (PKU) | Annual cost: $7200
The cost of food and formula limits many things besides medical foods themselves. Because of the high cost of formula and food, we’ve had difficulty affording supplemental educational support for our son. These costs limit what we have available to maintain our home properly. We’ve had to put off costly repairs due to not having...
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...
Phenylketonuria (PKU), Washington

Jordan

Phenylketonuria (PKU), Washington
My story is a sad one. I am a parent of a PKU individual. My son was born June 17, 1985, diagnosed with PKU at 3 weeks of age. He was immediately started on a PKU formula and progressed to a diet at the appropriate ages. He was doing great, at that time I...
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...
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...
Phenylketonuria (PKU), Tennessee

Isla, Age 5

Phenylketonuria (PKU), Tennessee
Phenylketonuria (PKU) | Tennessee | Annual cost: $6000
Having coverage for medical foods that my daughter requires is necessary for her success of her diet management! Without the only known management for PKU (low protein diet) my daughter would incur severe neurological issues and inability to complete daily tasks. With coverage of medical nutrition would alleviate the unnecessary stressors of the only...