PKU Toolkit - A Guide to PKU Management for Teens and Young Adults - Produced by Children's Hospital Boston, Applied Nutrition, and the New England Consortium of Metabolic Programs
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Insurance & PKU

InsuranceGetting PKU formula and low protein food paid for by health insurance can be a challenge. Things are easier if you know what steps to follow, and stay positive and persistent!

For Formulas

PKU formulas are the foundation of the PKU diet and are a primary source of nutrition for people with PKU.

You should know that:

  • Insurance varies from state to state
  • Coverage depends on your health insurance and your state law

What coverage is currently mandated in New England States for people with metabolic disorders?

Connecticut State mandated coverage of prescribed metabolic formula and foods modified to be low in protein.
Maine State mandated insurance coverage of prescribed metabolic formulas (100% coverage) and foods modified to be low in protein up to $3,000 per year.
Massachusetts State mandated insurance coverage of prescribed metabolic formulas (100% coverage) and foods modified to be low in protein up to $2,500 per year.
New Hampshire State mandated insurance coverage of prescribed metabolic formulas (100% coverage) and foods modified to be low in protein up to $1,800 per year.
Rhode Island State mandated insurance coverage of newborn screening fee. 
Vermont State mandated insurance coverage of prescribed metabolic formulas (100% coverage) and foods modified to be low in protein up to $2,500 per year.

Why is a State Law needed?

A State Law is needed because by FDA rules special formula is not a prescription item but a medical food and may be classified as durable medical equipment under your prescription plan. Medical review is needed for insurance coverage of formula, because it is the treatment for a metabolic disorder, however it may be called durable medical equipment.

Here are steps you can take to get coverage:

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