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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 ...

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 ...

When our daughter was born, our two employer-provided insurances refused to cover her condition.

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. ...

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.

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 ...

I am aware that we are some of the lucky ones in that we have great medical coverage via TRICARE. Others should be afforded the same opportunity for coverage

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 ...

The metabolic disorder itself is such a challenge in learning and dealing with and then to have to worry about the funds to get the food, formula and medical care she needs is another level of added stress.

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 ...

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 expensive & without coverage, it is nearly impossible to buy.

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 ...

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)

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 ...

As a pediatric gastroenterologist, I take care of children with diseases of the digestive tract. Medical nutrition is often the treatment of choice for these conditions. Insurance denial is particularly frustrating in the case of a motivated child who intends to consume the prescribed nutrition by mouth but is told that he/she would require a feeding tube to have this therapy covered by insurance.

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 ...

It is extremely difficult to provide my child with enough food to keep him healthy by keeping his blood phenylalanine levels at recommended levels and also keep him from being hungry.

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.