Congress: Please Read – My Daughter has a Rare Disease

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Do you see the beautiful girl in this picture? This girl is my daughter and my hero. She has been living with a rare disease and went undiagnosed for many years. Finally, she was properly diagnosed with Eosinophilic Esophagitis in early 2016. Food is her enemy and she has to survive by drinking a prescription formula, Neocate Splash. This formula keeps her alive and yet insurance companies are choosing to not cover this medical care necessity. She announced to me last week that she was afraid to die if insurance decided not to cover her formula. My husband and I will do everything in our power and might to ensure L has her formula. There are many families all across the United States facing this same struggle with trying to advocate for insurance to cover prescribed formula. Please have a heart and do what is best for all these families. Speak up and vote to pass bill H.R.2587 – Medical Nutrition Equity Act of 2017.

Why do we need this passed? To provide for the coverage of medically necessary food and vitamins for digestive and inherited metabolic disorders under Federal health programs and private health insurance, and for other purposes.

This needs to be a law in every state so insurance companies can quit denying our children the medical treatment they need to SURVIVE!

Friends, we are asking you to please contact your Representatives in your state and encourage their co-sponsorship of this important legislation, too! To find out who represents you, visit https://www.house.gov/representatives/find/.

Together we can make a difference and advocate for this bill to be passed!

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