Sunday, May 12, 2013

Medical Foods Equity Act For #PKU

     I've recently written about how expensive it is to purchase low protein foods.  Also that  most states don't mandate that insurance companies have to cover PKU foods and formulas.  Now for PKU patients, their low protein foods and formulas are their medicine.  Without them, there would be no way to take in all of the right kinds of foods to ensure that they are growing properly and that their brain is not being damaged.

     On May 20 & 21, the National PKU Alliance is lobbying for teh Medical Foods Equity Act (MFEA) in Washington D.C.!  This is a huge deal for people with PKU and people with so many other disorders.  So, if you're in the area and have a story to tell, please share.  The appointments begin at 2:00 on May 20 and continue throughout May 21.  If you are wanting to help, please contact Nicole Polkowski at
     If you're not able to help out in D.C., don't worry, you can still make a difference.  You'll be able to contact your representative in August when Congress is in recess.
     Not sure what the MFEA is?  Then read on or find the information on the National PKU Alliance website.

"The National PKU Alliance has been working since 2009 to help pass the Medical Foods
Equitey Act in Congress.  This bill would require all insurance companies to cover the cost
of medical foods (formula and foods modified to be low in protein) for CHILDREN AND
ADULTS with PKU and other inborn errors of metabolism.  This includes federal
insurance programs, such as Children's Health Insurance Program, Tricare, Medicaid,
Medicare and self-insured plans that are often exempt from state mandates because

 Bill Information
The bill has been introduced in the Senate and in the House during the last two Congressional Sessions.  The NPKUA hopes to have the Bill reintroduced in the new Congressional Session that began in January 2013. The NPKUA has recently collected letters from WI PKU families and adults to submit to Senator Tammy Baldwin's office in an effort to convince her to reintroduce the MFEA into the Senate. The NPKUA is also working with past sponsors of the Bill to get it reintroduced into the House.
The Medical Foods Equity Act would:
  • Require all insurance companies to cover the cost of medical foods
  • Require that insurers cover the medical equipment and supplies needed to administer medical foods
  • Cover the use of pharmacological doses of vitamins and amino acids.
  • The Secretary of Health and Human Services would determine the minimum yearly coverage for all health insurance plans
  • These new federal standards would not pre-empt state standards that require a higher minimum standard."
                                       via National PKU Alliance

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