People with Inborn Errors of Metabolism and Conditions on the RUSP who rely on medical foods

Hudson

Phenylketonuria (PKU) · Texas
Annual cost: $9600

While we are very fortunate to have insurance that can help us with the costs, there is still a great financial strain associated with ...

Zoe, Age 4

Phenylketonuria (PKU) · Tennessee
Annual cost: $4200

We adopted our beautiful daughter Zoe three months ago from China. We did extensive research on PKU and prepared ourselves the best we ...

Kayla

Oregon · Phenylketonuria (PKU)

When I moved to the West Coast by myself in 2014, I had to learn everything on my own like finding a clinic and handling coverage. I ...

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. ...

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 ...

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, Idaho Dietitian

Idaho · Immunoglobulin E & non-Im­mu­no­glob­u­lin E-mediated allergies to food proteins · Inborn Errors of Metabolism and Conditions on the RUSP · Medical or Surgical Condition of Malabsorption · Provider Stories

As a clinical dietitian in a clinic setting more than 75% of my time was spent managing covering for medical foods. These tasks ...

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 ...

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 ...

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 ...

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 ...

Sarah

Connecticut · Phenylketonuria (PKU)
Annual cost: $240

When our daughter was born, our two employer-provided insurances refused to cover her condition. One insurance was through the Ct. ...

Chris

Connecticut · Phenylketonuria (PKU)
Annual cost: $600

In 2017 I started working at my current employer. In January 2018 I filled out the paperwork with Cambrooke Therapeutics to have them ...

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 ...

Venetia

Louisiana · Phenylketonuria (PKU)
Annual cost: $6000

I have to be on Medicaid because I can not afford to get insurance on my own or thru my employer and it is very difficult to make ends ...

Joanna

Homocystinuria · Oregon

I was diagnosed with Homocystineuria at age 3, (1974) when I rubbed Trisodium Phosphate (paint Thinner) into my eyes. They originally ...

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