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 ...

Clayton, Age 4

 Ohio · Phenylketonuria (PKU)
Annual cost: $5040

Having the medical nutrition covered by our insurance would grealty imporve the options and the cost of the food that Clayton would ...

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 ...

Alice, 1

 Maryland · Phenylketonuria (PKU)
Annual cost: $1800

Medical nutrition coverage has significantly reduced the cost and strain on our family’s income for our daughter’s food. ...

Owen

 Phenylketonuria (PKU) · Utah
Annual cost: $36000

Medical nutrition coverage would make an enormous difference to our entire family. We spent years in school to provide a good living ...

Clark, Age 3

 Phenylketonuria (PKU) · Utah
Annual cost: $9000

Clark is 3 years old, and has a twin brother. He is as rambunctious and full of energy as any 3 year old boy could be. He’s the ...

Reynaldo

 Florida · FPIES
Annual cost: $3864

My son’s food allergies were so severe, he was reacting to the food I was eating through breastfeeding. He had blood in his ...

Hannah

 Maple syrup urine disease · New York
Annual cost: $1440

We are self-insured. We have had to change health insurances every year for the past several years because the insurance company went ...

Jennifer

 Maryland · Phenylketonuria (PKU)
Annual cost: $24000

I am a subscribed member to the largest employer sponsored health insurance program in the country, the Federal Employee Health ...

Hudson

 Phenylketonuria (PKU) · Texas
Annual cost: $9600

While we are very fortunate to have insurance that can help us with the costs, there is still a great financial strain associated with ...

Danae

 Homocystinuria · Illinois
Annual cost: $18000

Homocystinuria comes with the risk of heart attacks and strokes when not on diet. In college it was impossible to afford follow the ...

Jessica

 Phenylketonuria (PKU) · Tennessee
Annual cost: $6000

If there were no issues with getting medical formulas and medical foods, the stress of worrying would go away. As a child, we had no ...

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 ...