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PKU Legislation

Important legislation regarding PKU funding and resources is currently under consideration.

How you can help
  • The most important thing you can do to support these bills is to make sure that you are registered to vote! This lets your legislators know that you are keeping track of what they do, and that you will consider this when deciding who will earn your vote.
  • If you see your Representative or Senator on the list of cosponsors, please be sure to thank them and ask for their continued support as the bill moves through the legislative process.
  • If your legislators are not on the list, ask them why. Tell them how these bills can help your family. Give them the support they need to support your needs.

       Please Take Action TODAY!

The future of medical food coverage (formula and foods modified to be low in protein) is now at risk!

We need YOU to take action TODAY!


As previously announced, the Department of Health and Human Services (HHS) issued a "pre-rule bulletin" announcing its decision to offer "flexibility" to the states in the selection of essential health benefits. This "flexibility plan" does not guarantee coverage for formula or foods modified to be low in protein to treat PKU and other inborn errors of metabolism.  Even in states that have mandates, there is no guarantee that the state's choice of essential health benefits will include coverage of medical foods. 


How You Can Help Now: While the NPKUA plans to advocate with each state regarding its choice of essential health benefits, we can still make a difference by advocating directly with HHS. 


We need you to submit written comments to HHS asking them to (1) ensure that all of the essential health benefits plans provide coverage for medical foods for the treatment of PKU and similar inborn errors of metabolism under the chronic disease management category; (2) ensure that people with PKU are not discriminated against based on their disability.


Emails should be sent to:  HHS will only accept comments through January 31, 2012, so please act quickly!


Write Your Email Today!The following talking points can assist you with writing your email, but please do not feel limited by these. The more variety of messages sent, the more impact we can make.     


  • Let them know who you are and your relation to PKU.
  • PKU is a rare genetic disorder that requires lifelong treatment to avoid mental retardation, neurological problems, and other physical and mental complications.
  • Newborn screening is a mandatory public health program.  Failing to ensure coverage for medical foods discriminates against people with PKU based on their disability.  Medical foods are as important to a person with PKU as insulin is to a person with diabetes.
  • There are decades of proven evidence-based success in treating people with PKU with medical foods.  Not covering medical foods is catastrophic and fatal.  Failing to ensure coverage for PKU and other inborn errors of metabolism will lead to damaged babies, severe disability and the death of many children.  
  • The cost to include coverage for the treatment of PKU and inborn errors of metabolism is minimal, and far less than the enormous cost of caring for sick and disabled children and adults.       

Take Immediate Action! We only have until January 31, 2012 to submit our comments to HHS.


Send Email TODAY:


Thank you for taking the time to send your message to HHS. Your active role as part of the PKU community will help adults and children with PKU get and maintain coverage for medical foods!


Please visit the NPKUA advocacy page for more information!


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National PKU Alliance, Inc. | P.O. Box 501 | Tomahawk | WI | 54487