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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 ...

Emily, Age 18

Ohio · Phenylketonuria (PKU)
Annual cost: $2400

My name is Emily and I am 18 years old with Phenylketonuria. I would have to admit that sticking to a strict diet of 256 Phe a day is ...


Sarah

Connecticut · Phenylketonuria (PKU)
Annual cost: $240

When our daughter was born, our two employer-provided insurances refused to cover her condition. One insurance was through the Ct. ...


Chris

Connecticut · Phenylketonuria (PKU)
Annual cost: $600

In 2017 I started working at my current employer. In January 2018 I filled out the paperwork with Cambrooke Therapeutics to have them ...


Evan, Age 8

Florida · Maple syrup urine disease

Evan was born with MSUD and we were lucky that TRICARE covered his formula and supplements until his transplant. At the time, they did ...


Audrina, Age 8

North Carolina · Phenylketonuria (PKU)

My daughter was diagnosed with PKU at one week old. The moment that doctor called us it changed our lives forever. The metabolic ...

Allen

Michigan · Phenylketonuria (PKU)
Annual cost: $4980

I will begin with saying there are others that are in far greater need of medical nutrition coverage than myself. I have been brought ...


Gian, Age 2

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

I am currently a foster mom to a 2 year old with PKU. We live in the state of NC where medical food is not covered. His food is very ...

Adysen, Age 11

Phenylketonuria (PKU) · Texas
Annual cost: $3600

Medical coverage for our family will mean less time fighting the insurance for coverage. They decide when and how they are going to ...

Ben, Age 5

EOSINOPHILIC DISORDERS · Indiana
Annual cost: $4800

Though I’m on an employer plan, we contribute another $9000 a year to cover premiums for our 5 member family. That plan has a $6000 ...

Seton, Age 3

FPIES · Wisconsin
Annual cost: $3600

Our son was diagnosed with FPIES at around 7 months of age. He is intolerant or allergric to upwards of 40 foods. Even at the current ...

Tyler

Massachusetts · Phenylketonuria (PKU)
Annual cost: $1020

Insurance covers formula (so many cans a month) and also covers up to $5000 of food during the fiscal year July-April. If during the ...


Ezra, Age 3

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 ...


Vikram Christian, MD

EOSINOPHILIC DISORDERS · Minnesota · Provider Stories

As a pediatric gastroenterologist, I take care of children with diseases of the digestive tract. Medical nutrition is often the ...

Nia, Age 3

Maple syrup urine disease · Ohio
Annual cost: $3600

Insurance covers my daughters medical formula but doesn’t cover her medical foods. If my daughters medical foods were covered it ...

Claire, Age 8

Louisiana · Tyrosinemia
Annual cost: $6900

I want to introduce you to my eight-year-old daughter, Claire. At first glance Claire appears to be a normal 2nd grader. She loves ...

Hannah, age 18

Phenylketonuria (PKU) · Utah
Annual cost: $6000

I actually have two daughters with PKU. My grocery and monthly expenses is double what the average family pays. Medical bills have ...


Evan, Age 13

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 ...

The Medical Nutrition Equity Act will provide key support for those Americans who rely on medical foods to survive and thrive.