Declan, Age 11

When I was eligible for the Affordable Care Act, I “made too much money” since child support is added in for income for DE Healthy Choice Option through Medicaid. Therefore, I was informed that it would be at least $1600 a month just for Necessity Nutrition through Formula, not his low-protein foods or KUVAN medication! I am currently working part-time and was eligible for formula assistance and $500/month for low protein foods while I make less than $27k which includes child support!

Having coverage for Formula, Low-Protein Foods and Medications to allow for my child “not to feel/be hungry” would be appreciated. I have been advocating since he was born back in 2009… had I done nothing the genetic team at AI informed us when he was 4 days old, the government would have assisted him to the tune of at least $225k/annually for the rest of his life! There is NO safety net of Medical Assistance for the caregivers/advocates who struggle DAILY to keep our children on a Diet-For-Life! Only if we “allow” them to become irreversibly ill.

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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.