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 ...


Stephanie, Florida Dietitian

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

Coverage of medical foods is a large part of my practice in both my time-effort and my care recommendations for patients. For every ...

Isabel

New Jersey · Phenylketonuria (PKU)
Annual cost: $3600

I have two daughters. Only the younger one has PKU. We struggle to find foods that Isabel can eat. Medical foods are incredibly ...

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 ...


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 ...


Sarah, Age 50

Phenylketonuria (PKU) · Washington
Annual cost: $14400

Hello, I am a 50 year old Phenylketonuria patient at the UW Medical Center. I am one of the oldest patients in the PNW. My parents ...

Joseph

New York · Phenylketonuria (PKU)
Annual cost: $4200

I am a voting 48 year old PKU adult male who is self reliant and is a major source of income in my house hold. I have a career, build/ ...


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 ...


Brittany

Maine · Phenylketonuria (PKU)

The Medical Nutrition Equity Act (MNEA) has been re-introduced in Congress. We really need to push hard to get this passed, so I am ...

Draegen, Age 18

Phenylketonuria (PKU) · Texas
Annual cost: $6000

When my son, Draegen, was younger, he was on Medicaid. It covered his formula, but only a very specific kind. He ended up burnt out on ...

Samantha

Homocystinuria · Kentucky
Annual cost: $3192

I began my last semester of college excited for the year ahead, doing normal things for a college senior, thinking about life after ...


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 ...

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