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 ...

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 ...

Kelly

Homocystinuria · Michigan
Annual cost: $3600

My name is Kelly and I was born on October of 1989. I appeared to be a perfectly healthy baby, the youngest of three, to loving ...


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 ...

Jamus, Age 9

FPIES · Nebraska
Annual cost: $1200

My son, Jamus, has FPIES plus and our medical team thinks he has something that doesn’t even have a name put to it yet. He will turn ...

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 ...

Owen

Arizona · Phenylketonuria (PKU)
Annual cost: $6000

Having medical coverage for formula and medical foods would be an enormous relief. Even though Owen is only 12, I have worried since ...

Angelica

Kansas · Phenylketonuria (PKU)
Annual cost: $12000

Stepping out of the Blue – (Bear with me for a moment, this will all make sense in the end) Where it all began: I located a new ...


Dylan, Age 5

EOSINOPHILIC DISORDERS · Ohio
Annual cost: $18000

Diagnosed at 14 months. Husband was unemployed at the time, I was working. Went through every agency in Ohio for assistance on cost. ...

Sutton, Age 4

FPIES · Texas
Annual cost: $10200

My FPIES son could only tolerate 1 food (Quinoa) for 3 years without projectile vomiting or having hospitalization level diarrhea. We ...


Nicholas, Age 3

Michigan · Phenylketonuria (PKU)
Annual cost: $12000

Having medical foods coverage would lessen the burden of worrying about the special foods our son will need as he grows up. While we ...

Vincent

Florida · Tyrosinemia
Annual cost: $3600

The average child eats what everyone else eats and thrives based upon a combination of nutrition, exercise and genetics. While we can ...

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 ...

Eleanor, Age 7

California · FPIES

Nora was born tox positive to several drugs and social services moved her to my home to be with her bio sibling for adoption. She ...

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