National PKU Alliance is seeking your help--deadline Jan 31, 2012

Forwarding to you from the National PKU Alliance.

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

**Click on READ MORE for details**

Emails should be sent to: essentialhealthbenefits@cms.hhs.gov.  HHS will only accept comments through January 31, 2012, so please act quickly!

In December, 2011, 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.  There will be no national set of essential health benefits.  Each state can choose its essential health benefits from the following four choices:

 
1.                  The largest plan by enrollment in any of the three largest small group insurance products in the State’s small group market;
2.                  Any of the largest three State employee health benefit plans by enrollment;
3.                  Any of the largest three national FEHBP plan options by enrollment; or
4.                  The largest insured commercial non-Medicaid Health Maintenance Organization (HMO) operating in the State.
 
This “flexibility plan” does not guarantee coverage for formula or foods modified to be low in protein to treat 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. 
 
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 inborn errors of metabolism under the chronic disease management category; (2) ensure that people with IEM’s are not discriminated against based on their disability.
 
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 inborn errors of metabolism.
• Newborn screening is a mandatory public health program.  Failing to ensure coverage for medical foods discriminates against people with inborn errors of metabolism based on their disability.  Medical foods are as important to a person with an IEM as insulin is to a person with diabetes.
• There are decades of proven evidence-based success in treating people with IEM with medical foods.  Not covering medical foods is catastrophic and fatal.  Failing to ensure coverage for 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 inborn errors of metabolism is minimal, and far less than the enormous cost of caring for sick and disabled children and adults.      

 Thank you for taking the time to send your message to HHS.