Ian, Age 12

On top of the cost of formula, I have to buy specialty foods amounting to about $200 per month plus regular grocery store items for my son, fresh fruits and vegetables. Plus groceries for rest of family. My son will then age out of coverage per current policies. I worry about what will happen, will he have an occupation that will allow him to manage the cost?

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Joey

Even in Massachusetts, to get coverage for formula and food it is an absolute nightmare collaborating with insurance companies, pharmacies and clinics. I have fear each month that there will be an issue with something and I will not be able to get food or formula for my son because of a paperwork mistake or miscommunication between providers.

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Kathy, Age 55

I’m almost 55 with PKU need I say more… okay was a sample for Kuvan and Lanephex. Amount others like 1st Pku camps!

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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.