Alexander, Age 3

Xander was diagnosed with MSUD at 4 days of life. We were in a hospital that did not know how to treat, was not prepared to treat, and mistreated the disease. At 11 days of life, the geneticist finally reached

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Evan, Age 8

I am aware that we are some of the lucky ones in that we have great medical coverage via TRICARE. Others should be afforded the same opportunity for coverage

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Nia, Age 3

Insurance covers my daughters medical formula but doesn’t cover her medical foods. If my daughters medical foods were covered it would help us out tremendously! Insurance believes it is not a necessity to cover medical food. Medical food is a

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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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Hailey, Age 17

My insurance pays for amino acid modified formula but will not provide any coverage for low protein foods. Low protein food is very expensive. Sometimes my daughter has to go without foods she needs because we simply can’t afford it.

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Hannah

We are self-insured. We have had to change health insurances every year for the past several years because the insurance company went out of business, stopped covering our doctors, etc. We have to fight with the insurance companies every time

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Indigo, Age 5

It scares me to think about our daughter not having access to her medical formula. This isn’t an option for her, her life depends upon it and cost shouldn’t be a barrier for her or anyone living with a metabolic

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Carter, Age 5

Our family has been fortunate enough to have very good insurance coverage through an employer which provides 90% coverage for medical foods. Out insurance covers 90% of medical foods however we have to get the providers approved by the insurance

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Sabastian

It is really hard to have a child with a metabolic disorder. I pay over $600.00 per month for insurance coverage, It was prior to Obama Care $1200.00 per month. This does not leave me much funds left over to

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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.