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

Clayton, Age 4

Ohio · Phenylketonuria (PKU)
Annual cost: $5040

Having the medical nutrition covered by our insurance would grealty imporve the options and the cost of the food that Clayton would ...

Brandon

Phenylketonuria (PKU) · Virginia
Annual cost: $8400

If Brandon was able to get his medical food covered we would take advantage of ordering from Cambrooke foods company more often. His ...

Ellis, Age 12

Phenylketonuria (PKU) · Tennessee
Annual cost: $4200

We have been fighting insurance and coverage since Ellis was diagnosed. It is very time consummating and difficult to work with ...

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 ...

Allen

Michigan · Phenylketonuria (PKU)
Annual cost: $4980

I will begin with saying there are others that are in far greater need of medical nutrition coverage than myself. I have been brought ...

Nicole

Michigan · Phenylketonuria (PKU)
Annual cost: $4800

Coverage for medical nutrition for myself would mean freedom from worry and security that I will continue to be my best self. Without ...

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 · Inborn Errors of Metabolism and Conditions on the RUSP · 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 ...

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