Michigan PKU

We are getting closer to having a national standard for insurance coverage of PKU low protein foods and formula. Below is a recent update from the NPKUA who are spear heading this campaign.

 

I wanted to give you an update on our progress with the Medical Foods Equity Act – a federal bill that would require all health insurance companies, including federal plans, to cover the cost of medical foods (formula and foods modified to be low in protein) for life for all people with inborn errors of metabolism and similar diseases.

 Earlier this year, the bill was introduced in the U.S. Senate by Senator Kerry (MA) and the bill number is S.311. The Senate bill is co-sponsored by Senator Casey (PA), Senator Menendez (NJ), Senator Gillibrand (NY) and Senator Schumer (NY). A companion bill was also introduced in the U.S. House of Representatives by Congresswoman Baldwin (WI) and the bill number is HR.1311. The House co-sponsors are Rep. Sheila Jackson Lee (TX), Rep. Eddie Bernice Johnson (TX), Rep. Hank Johnson (GA), Rep. Jared Polis (CO) and Rep. Debbie Wasserman Schultz (FL).

 We need your help in spreading the word to your communities about this bill and getting adults and families to contact their legislators.  We have developed many materials about the bill and how to contact legislators that you can easily adapt these for your own disease group at 
Talking Points.

 Below is also a phone script that you can pass on when making calls to Congress. 

Look up your two Senators and one House Representative at 
Find your legislators.   
Make a note of each Legislator's name and Washington, DC Phone Number.

Next . . .

 

Call their Washington, DC office and ask to speak with the Health Legislative Assistant.

Use the guide below to explain the reason for your call.
Thank you for taking the time to speak with me. My name is  ------------ and I am calling to talk with you about the Medical Foods Equity Act, Senate bill number S.311 and House bill number S.1311. Feel free to provide your relationship to the IEM Community.

Before going further, ask the Health LA if they are familiar with the disease you and/or your family has been affected by.

Explain why the legislation is needed.

* Although the Newborn Screening Saves Lives Act requires states to screen for many disorders, there is not adequate coverage for the required treatment.

* 38 states have laws governing medical foods, but they are inconsistent and many patients are denied access to treatment. In states with treatment provisions, many self-insured plans deny treatment under ERISA.

* Medical foods are expensive because they are manufactured for treatment of rare conditions. The average family cannot afford them without insurance coverage or other assistance.

* The Medical Foods Equity Act is based on recommendations of the HHS Advisory Committee on Heritable Disorders in Newborns and Children and endorsed by over 40 organizations.

 

Explain why co-sponsorship is the right thing to do.   These are for PKU – you can come up with your own of what happens if you don’t have access to medical foods.

* An untreated child with PKU can lose 4 IQ points each month and will become severely mentally retarded before reaching toddlerhood.

* Children and adults who are off-diet also experience many other medical issues, including depression, impulse control disorder, phobias, epilepsy, tremors, and pareses.

* Women with PKU face a special dilemma in planning a pregnancy. Infants of mothers with high phenylalanine levels exhibit mental retardation, heart defects, and growth retardation.

Thank the Health LA for taking the time to speak with you and request their email address. Ask when they will be able to provide feedback from your Representative.

 

The National PKU Alliance received a $50,000 grant for PKU research from the Pepsi Refresh Project!

Thank you all for voting. This will really help move PKU research along.

Check out:

npkuafindacure

and

pku-research-overview