Patients and Providers for Medical Nutrition Equity Patients and Providers for Medical Nutrition Equity

PATIENTS AND PROVIDERS FOR MEDICAL NUTRITION EQUITY

These are people with Tyrosinemia whose lives are sustained by medical nutrition.

Their average annual cost for medical foods is $5700 per person.

Texas, Tyrosinemia

Andrew, Age 18

Texas, Tyrosinemia
Texas | Tyrosinemia | Annual cost: $9600
My mother has worked as many as 5 jobs concurrently to maintain employer-provided insurance and has CONSTANTLY fought to keep me on a Medicaid waiver program, as they try to kick me off the program frequently. All of this and in Texas, I am still unable to have ANY coverage for medical nutrition, which...
Florida, Tyrosinemia

Sasha, Age 11

Florida, Tyrosinemia
Florida | Tyrosinemia | Annual cost: $6000
My daughter was diagnosed with a genetic inborn error of protein metabolism at 15 months of age. Since that time, our daily life has been dominated by an acute awareness of the critical importance of Sasha’s nutrition (and the incredibly difficult task of finding safe, low protein food options). I remember the first time...
New York, Tyrosinemia

Ethan

New York, Tyrosinemia
New York | Tyrosinemia | Annual cost: $4800
Ethan has tyrosinemia and cannot eat a regular diet. He is restricted on the amount of protein he is able to consume on a daily basis, meaning we need to purchase food and formula to meet his nutritional goals. This is costly and difficult without medical reimbursement. Our company is self employed and does...
New York, Tyrosinemia

Zoey, 15 months

New York, Tyrosinemia
New York | Tyrosinemia | Annual cost: $1200
When our daughter was diagnosed with an Inherited Metabolic Disorder at 10 days old I remember the frantic whirlwind of calls, emails, faxes and paperwork to make sure she was on my husband and my insurance plan. Not only were we trying to absorb what was happening and learn about our daughter's diagnosis, we...
Florida, Tyrosinemia

Vincent

Florida, Tyrosinemia
Florida | Tyrosinemia | Annual cost: $3600
The average child eats what everyone else eats and thrives based upon a combination of nutrition, exercise and genetics. While we can not control our genetic make-up, most of us can "eat right, exercise and enjoy good health" - but for metabolic patients, in particular children...it's not that easy. My little boy just wants to...