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

Sarah

Connecticut · Phenylketonuria (PKU)
Annual cost: $300

At first my dad’s Connecticut Carpenters insurance refused to cover my condition so he took a job with the Milford Board of ...

Kendall

Maryland · Phenylketonuria (PKU)

My name is Kendall Temple Jr. and was born in 1966. I was one of every first people diagnosed with PKU in the state of Maryland. There ...

Kurt

Maryland · Phenylketonuria (PKU)
Annual cost: $8400

Having coverage for medical nutrition would mean I would have access to life-saving foods and formulas without ever having a lapse in ...

Camden, Age 10

Indiana · Isovaleric acidemia
Annual cost: $1200

Our adopted son was diagnosed with isovaleric acidemia at birth. This is an incurable disorder that can be managed with a low-protein ...

Grayson, Age 2

Colorado · Homocystinuria
Annual cost: $1440

Grayson needs to take an injection of a specialty compounded form of B12 called Hydroxocobalamin. Our insurance through my husbands ...

Leah, Age 12

Alabama · Homocystinuria
Annual cost: $3600

We have an excellent private BCBS insurance policy, that we pay monthly for. As great as it is, it will not cover our daughters ...

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 ...

Elyse

Colorado · Phenylketonuria (PKU)
Annual cost: $3600

Medical nutrition coverage would mean FREEDOM. Freedom from worry and the freedom to be able to make normal life choices such as what ...

Heather

Missouri · Phenylketonuria (PKU)
Annual cost: $14400

I have phenylketonuria and am required to eat low protein foods and drink a formula supplement daily FOR LIFE. Without these items I ...

Melissa, Age 26

Phenylketonuria (PKU) · Texas
Annual cost: $8840.04

I am a 26 year old with PKU. I am pregnant with my second child. Maternal PKU is so important because being off diet can cause harm to ...

Caroline, RD

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 · Minnesota · Provider Stories

I am a Registered Dietitian for GI disorders. I spend probably 10-20% of every week working on ordering medical foods for patients ...

Annabelle, Age 4

Phenylketonuria (PKU) · South Carolina
Annual cost: $600

Having medical food coverage would expand our daughter’s ability to try new and different foods. Medical foods such as rice, ...

Liam, Age 1

Massachusetts · Phenylketonuria (PKU)
Annual cost: $3600

Right now my husband and I are financially stable and we can afford the almost $100 per month we spend on medical formula and the ...

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