Support the Medical Nutrition Equity Act

On top of the cost of formula, I have to buy specialty foods amounting to about $200 per month plus regular grocery store items for my son, fresh fruits and vegetables. Plus groceries for rest of family. My son will then age out of coverage per current policies. I worry about what will happen, will he have an occupation that will allow him to manage the cost?

Ian, Age 12

3-Hydroxy-3-methyglutaric aciduria · Arizona
Annual cost: $3600

Having better coverage will will certainly lower our costs. To have to pay escalating insurance premiums plus the cost of formula and ...

Declan, Age 11

Delaware · Phenylketonuria (PKU)
Annual cost: $24000

When I was eligible for the Affordable Care Act, I “made too much money” since child support is added in for income for DE ...

Lisa, Age 6

Indiana · Phenylketonuria (PKU)
Annual cost: $3000

We adopted Lisa last year. Prior to that she was in Florida. Due to the low amount covered in Florida Lisa was on a very limited diet. ...

Norah, Age 4

New York · Phenylketonuria (PKU)
Annual cost: $1800

When Norah was just 5 days old, we received a call from our clinic saying that Norah had something called PKU. At the time, we had ...

Our daughter must take a medication twice a day, drink medical formula and eat special medical foods in order to stay healthy. We are extremely lucky that our insurance covers a large portion but so many families are not as lucky as we are. Medical nutrition IS NOT AN OPTION.

Zoey, 15 months

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, ...

When patients' mental health deteriorates because they cannot follow their diet, they often lose their job and get incredibly frustrated with the system.

Sue, Michigan Dietitian

Inborn Errors of Metabolism and Conditions on the RUSP · Michigan · Provider Stories

There are so many patients (especially PKU patients) who would like to improve their health status, including mental health, but ...

I have avoided purchasing the medical food I needed because we can’t afford the food.

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 ...

Amber

Indiana · Phenylketonuria (PKU)
Annual cost: $4980

I was born in 1990 with PKU. My parents were told to expect severe disabilities. We need these medical foods for our everyday lives. ...

Luke, Age 4

California · Phenylketonuria (PKU)
Annual cost: $3600

My son is only 4. He has a whole life of this expensive cost of life, that he had no choice to live, to hover over him forever. He has ...

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, Age 61

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 ...

Alexander, Age 23

California · EOSINOPHILIC DISORDERS
Annual cost: $4800

My son has eosinophilic gastritis and esophagitis. His foods are very limited and he basically lives off chicken breast and rice. Even ...

Jane’s formula cost out of pocket for EEN was approximately $300 per month. Her team of health care providers attempted to obtain insurance coverage but was denied even after appeals were attempted.

Jane, Age 7

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 ...

My pasta costs almost 10 times more than pasta bought at a local grocery store. My medical food should be looked at as medicine, not food. It is a requirement, not a choice.

Kelly

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 ...

Oliver, 10 months

North Carolina · Phenylketonuria (PKU)
Annual cost: $4800

My son was a week old when we got the news that he has PKU. I had no clue what this was and didn’t realize just how serious it ...

Leo, Age 2

Illinois · Immunoglobulin E & non-Immunoglobulin E-mediated allergies to food proteins
Annual cost: $9216

My son began drinking Neocate junior at 12 months. It was not covered by our insurance. All formula is excluded from out plan because ...

Hailey, Age 1

Iowa · Phenylketonuria (PKU)
Annual cost: $7200

Coverage would give our family peace of mind. My youngest daughter, Hailey, has PKU. Everyday, she is required to drink a very ...

Avery, Age 3

EOSINOPHILIC DISORDERS · FPIES · Immunoglobulin E & non-Immunoglobulin E-mediated allergies to food proteins · New York
Annual cost: $2700

Coverage would ease a huge financial burden for our family. Not only is the formula expensive, but so is the specialized diet Avery ...

Jalen, Age 5

Ohio · Phenylketonuria (PKU)
Annual cost: $3600

My state gives us formula covered which is the biggest blessing but my daughter is just now getting ready to start foods. I am a ...

Linkyn, 18 months

California · Phenylketonuria (PKU)

My daughter was born with PKU, a rare metabolic disorder. Right now, we are lucky to have insurance cover her formula and medical ...

I stopped taking the formula because it's $2000/month out of pocket and I couldn't afford that. Later that year I visited my clinic, where I found that my vitamin levels were critically low because I didn't have access to the formula. I essentially went the whole year without any kind of formula or protein supplement.