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

Evan, Age 8

Florida · Maple syrup urine disease

Evan was born with MSUD and we were lucky that TRICARE covered his formula and supplements until his transplant. At the time, they did ...

Chelsie

Phenylketonuria (PKU) · Utah
Annual cost: $24000

Coverage for medical nutrition would be a huge blessing to me and my family, and also many other individuals with PKU especially ...

Scarlett, Age 2

Phenylketonuria (PKU) · Utah
Annual cost: $4800

Having coverage would make sure that my baby will always have the food and formula she needs throughout her life to have a healthy ...

Krew, Age 3

Phenylketonuria (PKU) · Utah

When Krew turns 6 and is no longer covered by the state metabolic program, we will have to seriously consider moving to a state with ...

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 ...

Levi, Age 2

Phenylketonuria (PKU) · Utah
Annual cost: $9960

His medical formula/milk costs about $130 a can. He goes through about 5 cans a month. Thankfully that’s currently covered under ...

Tyton, 9 months

Phenylketonuria (PKU) · Utah
Annual cost: $2400

Finding out your little one has a life changing condition at birth can be a whirlwind. Self Discipline is something that is mandatory ...

Clark, Age 3

Phenylketonuria (PKU) · Utah
Annual cost: $9000

Clark is 3 years old, and has a twin brother. He is as rambunctious and full of energy as any 3 year old boy could be. He’s the ...

Hannah, age 18

Phenylketonuria (PKU) · Utah
Annual cost: $6000

I actually have two daughters with PKU. My grocery and monthly expenses is double what the average family pays. Medical bills have ...

Kacie

New York · Phenylketonuria (PKU)
Annual cost: $5880

My kids have been on their diet their entire lives (we have three kids with PKU) and now at a crucial time (maternal age), she can not ...

Liza

Oregon · Phenylketonuria (PKU)
Annual cost: $8400

Because our employer plan is self-funded, and we have no other plan options through the company, I have no coverage for even formula ...

Will, Age 14

Phenylketonuria (PKU) · Washington
Annual cost: $4200

I am 14. I need my formula to live and grow. I am an athlete and a good student. My formula and low protein foods are critical for my ...

Hailey, Age 1

Iowa · Phenylketonuria (PKU)
Annual cost: $7200

Coverage would give our family peace of mind. My youngest daughter, Hailey, has PKU. Everyday, she is required to drink a very ...

Jessica

Phenylketonuria (PKU) · Tennessee
Annual cost: $6000

If there were no issues with getting medical formulas and medical foods, the stress of worrying would go away. As a child, we had no ...

Amber

Indiana · Phenylketonuria (PKU)
Annual cost: $4980

I was born in 1990 with PKU. My parents were told to expect severe disabilities. We need these medical foods for our everyday lives. ...

Saif, Age 5

Florida · Phenylketonuria (PKU)
Annual cost: $6000

Hi, I am only 5 years old now and my parents struggle to provide the right food for me for my special diet. Coverage would mean now ...

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