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Sarah

FPIES · Georgia

Sarah, who lives near Atlanta, GA, was a healthy baby, born full term to a mom who had a normal and healthy pregnancy. She was ...

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 ...


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 ...


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 ...


Sabastian

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 ...

Maximus, 9

Missouri · Phenylketonuria (PKU)
Annual cost: $30000

Earlier this year we experienced what not being able to afford formula & medications or have no insurance coverage is like for so ...


Ashley, Utah Metabolic Nurse Practitioner

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

Medical food practice affects our practice in several ways. First, and foremost, our desire to bring the best possible care and ...


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 ...


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 ...


Laryssa

New York · Phenylketonuria (PKU)
Annual cost: $7200

Passing this law would mean a lot more money to go around. Better health for me which makes me better for my ...

Drake, Age 3

Kansas · Phenylketonuria (PKU)
Annual cost: $6000

Our insurance covered the medical beverage for one year and then stopped. This was so terrible because we had no notice and the ...

Joseph

Homocystinuria · Illinois
Annual cost: $4800

Better coverage for my son would alleviate the concerns about not being able to afford the medicine he needs . Insurance info: Our ...


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 ...

Saylah, Age 2

Kansas · Phenylketonuria (PKU)
Annual cost: $2400

My daughter has a milder form of PKU and therefore does not need as much formula to live a healthy life. However, as she gets older ...

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 ...

Maeve, Age 8

Phenylketonuria (PKU) · Texas
Annual cost: $3600

As all parents who experience it, we were overwhelmed once we got the call, at 5 days of age, that our daughter Maeve had been ...

Lelia, Age 2

Idaho · Phenylketonuria (PKU)
Annual cost: $600

For our family, the most meaningful part of medical nutrition coverage would be hope and confidence for the future. We have coverage ...

The Smiths

Arizona · Phenylketonuria (PKU)
Annual cost: $12000

Our family is unique, in that I have PKU as well as our four adopted sons. With no guarantee of insurance coverage, I fear that my ...

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