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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Getting Reimbursed For Low Protein Foods

A woman sitting at a desk speaking to a doctorIn many states laws mandate coverage of special low protein foods. You often need to purchase low protein foods from the manufacturers or distributors directly and then file claim forms in order to get reimbursed by your insurance company.

Some insurers will accept direct billing. You can visit the Cambrooke Foods website for tips on insurance billing.

If you have to submit these claims on your own:

  1. Try to find a person at the insurance company whose job is to help people with a chronic condition like PKU.
  2. Find out where and to whom you need to send these claims.
  3. Include your physician's prescription or written referral, letter of medical necessity written from your doctor/dietitian along with the approval letter.
  4. Make copies of everything.
  5. When mailing insurance claims, send them "return receipt" or "certified mail". That way, you have proof that the claim has been submitted and that they have received it.  

If you are denied or have a problem don’t give up!

You may need to persist and ask for clarification about what additional information is needed.

  • You can submit an appeal, or your human resources benefits coordinator can advocate for coverage.
  • Your congressman can help with interpretation of the law and act as an advocate for you.
  • You have the option of requesting an internal or external review of the insurance company. To get started call the Office of Patient Protection 800-436-7757.

We know that the road to getting health coverage may be difficult. However, now you know what route to follow, and you can use these forms to organize your information:

Remember:

  • Take one step at a time.
  • Every contact starts with a phone call and you may need to explain PKU many times.
  • Keep a day planner where you write down phone contacts to be able to refer to later. Note name, phone number, issue discussed and plan.
  • Keep one file just for medical/insurance information. This makes it easy to look back.
  • Don't get discouraged!
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