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, 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...
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...
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...
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...
Massachusetts, Phenylketonuria (PKU)

Joey

Massachusetts, Phenylketonuria (PKU)
Massachusetts | Phenylketonuria (PKU) | Annual cost: $12000
In Massachusetts we are fortunate to have a mass mandate for formula and up to 5000 dollars coverage for medical food. From what it sounds like, we have better coverage than a lot of other states. However, to get coverage for formula and food it is an absolute nightmare collaborating with insurance...
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...
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...
Phenylketonuria (PKU), Washington

Sarah, Age 50

Phenylketonuria (PKU), Washington
Phenylketonuria (PKU) | Washington | Annual cost: $14400
Hello, I am a 50 year old Phenylketonuria patient at the UW Medical Center. I am one of the oldest patients in the PNW. My parents were told to put me in an institution but they said no and found a pediatrician that put me in the first clinical trial for treatment of PKU....
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...
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...
Texas, Tyrosinemia

Andrew, Age 18

Texas, Tyrosinemia
Texas | Tyrosinemia | Annual cost: $9600
My mother has worked as many as 5 jobs concurrently to maintain employer-provided insurance and has CONSTANTLY fought to keep me on a Medicaid waiver program, as they try to kick me off the program frequently. All of this and in Texas, I am still unable to have ANY coverage for medical nutrition, which...
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...