Resources for Patients and Families

Michigan Family to Family Health Information Center:  Accessing Coverage for Metabolic Formula, A Toolkit for Familiesbabies (2)
This toolkit, developed for Michigan families, contains information that would be relevant to individuals in other states including how to find out if your private insurance covers metabolic formula, understanding your insurance coverage, glossary of insurance terms, what to do if your claim is denied, National PKU Alliance chapter in insurance coverage for PKU treatment, and a metabolic condition cost calculator worksheet.

National PKU Alliance Insurance Coverage Toolkit
Provides information on insurance language, HCPCS codes, understanding your insurance, insurance challenges and ways to succeed (presentation), state-specific laws regarding PKU-related medical foods, the ACA state exchanges and medical food coverage, and links to patient assistance program.

National PKU Alliance Affordable Care Act Resources
Contains information on the Affordable Care Act, state insurance exchanges, and essential health benefits.

Picture2National PKU Alliance: Medical Foods Equity Act
This website provides a summary of the National PKU Alliance work on the Medical Food Equity Act and provides resources for individuals who want to get involved by contacting their state representatives.

PACER Center: Champions for Children with Disabilities
PACER’s Health Information Center provides a central source for families of children and young adults with special health care needs and disabilities to obtain support, advocacy, and information about the health care system.


NORD Press Release: NORD Applauds Senate for Authorizing Medical Foods Coverage for the Military in National Defense Authorization Act (June 16, 2016)
This press release reviews the Senate Authorization of medical foods coverage by Tricare in the Military National Defense Authorization Act for fiscal year 2017.  This bill became law on 12/23/2016 and can be accessed here (

Michigan Diet for Life Website
Contains links to a number of resources for Michigan residents as well as links to a webinar on accessing coverage for metabolic formula (specific for Michigan residents, but contains information that would be helpful to individuals in other states), links to the National PKU Alliance website, a PKU Toolkit from Children’s Hospital Boston, Cambrooke Therapeutics Patient Support, Nutricia Metabolics coverage department, Compassion Works Medical, and nutritional guidelines.

Arabic Muslim mother playing and taking care of her baby Michigan Family to Family Health Information Center:  Accessing Insurance for Medical Food and Formula
This website contains information specific to Michigan residents regarding coverage of medical food and formula.  It also contains resources that would be helpful for individuals both in and outside of Michigan including a link to the presentation on Accessing Coverage for Metabolic Formula, the newborn screening policy brief, and Diet for Life workgroup report.

This program includes a program that provides metabolic formula for individuals diagnosed with PKU, homocystinuria and other metabolic conditions.

Kentucky Metabolic Foods and Formula Program

Minnesota WIC Program