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Corey, Age 26

New York · Phenylketonuria (PKU)

Turning 26 and navigating through my own insurance was a nightmare. NYS Medicaid is a blessing but not sure how long I can stay on ...

Pamela

Homocystinuria · Nevada
Annual cost: $3600

It would mean so much to have the medical nutrition equity act passed. I have a diagnosis of homocystinuria which was discovered very ...

Claire, Age 12

Phenylketonuria (PKU) · Utah
Annual cost: $2400

My insurance company recently denied coverage for my daughter’s formula to treat her PKU. They said she can only have formula ...

Kacie

New York · Phenylketonuria (PKU)
Annual cost: $5880

My kids have been on their diet their entire lives (we have three kids with PKU) and now at a crucial time (maternal age), she can not ...


Sarah, Washington DC Nurse Practitioner

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

Staff time alone is the most major barrier. We are fortunate to have a Metabolic Clinic Manager to keep on top of all the insurance ...

Sarah

Phenylketonuria (PKU) · Tennessee
Annual cost: $37800

My name is Sarah. Im 24 and I have classical PKU which means my enzyme in my liver has a hard time fuctioning breaking down ...

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 ...

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 ...

Ryan, Age 3

Phenylketonuria (PKU) · Utah
Annual cost: $2400

Having a child with PKU is extremely time consuming! I am always preparing special food for him and making sure he has what he needs ...

A. Jay

EOSINOPHILIC DISORDERS · Texas
Annual cost: $6000

It would end the never ending anxiety of worrying about whether I can feed my son who has Eosinophilic esophagitis. My insurance will ...

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 ...


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 ...

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 ...

Liza

Oregon · Phenylketonuria (PKU)
Annual cost: $8400

Because our employer plan is self-funded, and we have no other plan options through the company, I have no coverage for even formula ...

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 ...

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