Elizabeth

I’m Elizabeth and I have Classic PKU. When I was five my drs and parents a took me off the diet and formula. I was fine till age 30. That’s when i started suffering from pku side effects and severe

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Sebastian, Age 25

Medicare always denying coverage, constant. Medicare is very poor. EOB’s need improvements. I have a son that needs medical nutrition and without it he would have passed away years ago. Medicare always denying coverage, constant. Medicare is very poor. EOB’s

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Leonard, Age 3

I have two sons and only Leo has PKU. We maintain a low protein diet for Leo, but due to the high cost of low protein medical foods, we spend a lot of our time cooking and finding alternative meals

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Elsie, Nearly 2

Prior to switching to my husbands employer benefits we paid $125 per month out of pocket for our daughters formula. When my husband brought home his welcome packet with insurance information in it we immediately flipped to the section about

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Hattie (20 months) and Maxine (6 months)

We have two beautiful daughters, Hattie (20 months old) and Maxine (6 months old) who were diagnosed with PKU at birth. Because of their PKU both girls require medical formulas in order to grow and develop on par with their

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Mark, Age 61

So far Mark’s medical nutrition has been covered after the out of pocket maximum is met (this year it is $7,450). But we never know year after year if it will be or not and January is always stressful not knowing if will be or not.

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Ellie

Food is the most important thing to any mother who has an infant. While most mothers who have a two week old are just making sure they are producing enough milk or getting enough formula, we were in the NICU

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Kennedy, Age 9 months

Kennedy was diagnosed with PKU at 5 days old. Left untreated this disorder can lead to serious brain damage. While we are very fortunate to have Kennedy’s formula covered, we will be burdened with hundreds of dollars in medical food

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Jeff

MSUD powder is expensive – $2,775.00 for about 2 1/2 months of powder and is the mainstay of the diet for an MSUD person. Insurance always denies payment for other protein supplements such as valine and isoleucine which are recommended by the doctor.

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