Jeff

Maple syrup urine disease · Pennsylvania
Annual cost: $2700

We purchase medical insurance from employer. Employer is self insured so not subject to the Pennsylvania Medical Foods Act. MSUD ...

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 ...


Danielle, Age 3

Florida · SBS
Annual cost: $12000

Our beautiful happy and energetic three year old daughter Danielle was born at 35 weeks New Year’s Day 2016. She was diagnosed at ...

Mayes, Age 4

EOSINOPHILIC DISORDERS · Texas
Annual cost: $7200

Mayes was diagnosed with EoE and EC at the age of 15 months old, after a long and painful process of seeking a diagnosis. He was ...


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 ...

Jennifer

Phenylketonuria (PKU) · Washington
Annual cost: $6000

The amount of medical debt my family has had to trudge through, during my 43 years of living with PKU, has been financially crippling. ...

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 ...

Anthony, 1

Phenylketonuria (PKU) · Texas
Annual cost: $9000

Earlier this year we took custody of our grandson Anthony. He was diagnosed after birth with PKU. He has lived with us since birth, ...

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 ...

Caroline, age 18 months

FPIES · Maryland
Annual cost: $9600

Caroline was born 7 weeks premature. She stopped breathing several times almost dying. Neocate Jr is the only think she eats to ...

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 ...

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 ...


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 ...


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 ...

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