It can be frustrating getting covered for your PKU treatment. Many families and adults have challenges getting the PKU formula and low protein foods by your health insurance. “Medical foods” is the primary language to use when dealing with your health insurance on these issues. All you need to do is follow a few simple steps: insurance language, understanding insurance coverage and stay positive! The NPKUA’s Insurance Coach’s Team can hold your hand the whole way through to help alleviate your medical foods coverage concerns.  

Insurance Language
It is important to understand certain insurance terminology.  When dealing with your insurance carrier the language changes from simple questions to abbreviations and codes. Examples of insurance language include:

  • Medical Foods 
  • Enteral Formula 
  • Durable Medical Equipment (DME)/Medical Supplies 
  • HCPCS Codes/Service Code (Healthcare Common Procedure Coding System) 
  • Prior-Authorization/Pre-Certification 
  • Exclusions 
  • Co-insurance 
  • Deductible 
  • Out-of-Pocket expense 
  • Annual Max 
  • Fully Insured or Self-Funded    

One of the main codes used are called HCPCS codes. For more information on HCPCS Code Information, please click here.

Your health insurance plan may change from year to year depending on who you get your health care coverage from. To begin, you need to learn what is and what is not covered under your current plan. To learn more about understanding your insurance coverage, please click here to download Medical Foods Coverage Support and Tips. You can also download a chapter on insurance issues here from My PKU Binder. 

Insurance Challenges and Ways to Succeed are based on a presentation from the NPKUA’s 2012 Conference. Click here to download this presentation to learn the basics of different types of insurance coverage, tips and skills and strategies to address your insurance challenges.   

Coverage for PKU-related medical foods varies from state to state, although 39 states have passed laws that require at least some coverage. Some states have passed legislation to mandate insurance coverage for medical foods, while others provide medical formula and some low protein foods directly to PKU patients through newborn screening or state health department programs. To find information about laws in your state, visit our state coverage resource tool at:

The National Organization for Rare Disorders (NORD) also has a state by state insurance web resource at:

The Affordable Care Act 
This law was passed by Congress in 2010 and requires that all states set up health insurance exchanges where small businesses and individuals can choose a health insurance policy that fits their health needs and that they can afford.    

These exchanges are meant to be one-stop marketplaces (via websites) where people can shop for health insurance. Open enrollment for the insurance exchanges is open and coverage starts as soon as January 1, 2014.     

In order to help you navigate the insurance exchanges, we have created an information sheet detailing the ACA insurance exchanges and the coverage for medical foods for PKU. Click here to download the handout. Please also visit to learn more about how the insurance exchanges will work best for you.   

Patient Assistance Programs

Many medical food companies and pharmaceutical companies have patient assistance programs to help individuals who cannot afford who cannot afford drugs or medical foods on their own. Please click here for a list of current programs. 

Coverage for Kuvan
The BioMarin Patient and Physician Support (BPPS) is a program that can help you access Kuvan and make insurance and assistance easier. Visit or call 1-877-MY-KUVAN for more information.   

Coverage for PKU
The National Organization of Rare Disorders (NORD) has a patient assistance program to help individuals with PKU cover their out of pocket costs associated with their insurance plans, such as: monthly premiums, deductibles, co-payments and co-insurance. This program does not offer assistance with medical foods. Call 1-855-628-0646 or email to learn more.   

Letter of Medical Necessity
Letter of Medical Exclusion