Important Information - Medical Foods Equity Act

I'm not usually one to post my opinions on political topics, but I've received some information this week that is I.M.P.O.R.T.A.N.T!!! Seriously...very near and dear to our hearts and something that will affect Isaiah for the rest of his life. Of course as Zay's parent's we worry about him a lot...but something that many people don't think about is the financial implications of being born with a rare genetic disorder. I really try not to focus on how much his food and formula costs, because we would and will do whatever is neccessary to provide for our little boy and any of our future children, should they have PKU as well. But...sometimes laws just don't make sense to me...for example...


The Newborn Screening Saves Lives Act requires states to screen for PKU, however there is not adequate coverage for the required treatment.


And...


The average annual cost of medically necessary formula and food for PKU is approximately $7,000 in wholesale costs per year. Care for an untreated PKU patient in residential treatment is at least $60,000 (or approximately $200,000 per year for an inpatient mental health facility).


Basically insurance companies count on us (parents), to make the right decisions and necessary sacrifices to enable our PKU child to grow up normal and healthy. Because we do the right thing and take care of our child they don't need to pay anything. However, if we didn't do the right thing, and our child became mentally handicap...they would then provide coverage. ...just doesn't seem right!


Ok...I've said enough, I'll let you read the rest of information on the Medical Foods Equity Act. If you feel convicted, please contact our Iowa Senators and let them know that you know our Isaiah! It would mean so much to our family! (I've put Grassley and Harkin's information at the bottom of this post, it's so easy to send them an email!). Thank you!

The National PKU Alliance had an incredible time in Washington, DC last week to launch our Medical Foods Equity Act campaign in Congress. We now need your help to keep the momentum going in the U.S. Senate.

This federal bill 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 PKU.

We started out the week at the American Dietetic Association (ADA) Public Policy Conference where 600 registered dietitians from across the country visited with their Senators and Representatives to speak about the bill. Then, the ADA held a Congressional briefing on the bill where we were able to reach even more Congressional offices to talk about why it is so important to ensure that the 20,000 Americans living with PKU and similar disorders have coverage for medical foods. We ended the week at a Medical Foods Conference sponsored by the National Organization of Rare Disorders (NORD) that brought together patients, medical professionals, industry leaders and government agencies to discuss access and reimbursement issues.

Last Tuesday, Senator Kerry (MA) re-introduced the Medical Foods Equity Act in the Senate. The bill is also co-sponsored by Senator Casey (PA). We now need you to contact your two Senators and ask them to co-sponsor the bill.

To help:

PLEASE GO TO http://www.npkua.org/index.php/your-legislators and look up your two Senators. Make note of eachSENATOR'S NAME and WASHINGTON, D.C. PHONE NUMBER.

1. Call their Washington, D.C. office and ask to speak with the Health Legislative Assistant.
2. 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. introduced by Senator Kerry. Feel free to provide your relation to the PKU Community.

3. Before going further, ask the Health LA if they are familiar with PKU. If not, provide the following:

• PKU is an inherited metabolic disorder in which the body cannot process a part of protein called phenylalanine.
• Untreated PKU can lead to severe, progressive mental retardation.
• In order to remain healthy, individuals with PKU are limited to a highly restrictive low-protein diet and must consume medical food every day for the rest of their lives.

4. Explain why the legislation is needed.

• Although the Newborn Screening Saves Lives Act requires states to screen for PKU, 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.
• The average annual cost of medically necessary formula and food for PKU is approximately $7,000 in wholesale costs per year. Care for an untreated PKU patient in residential treatment is at least $60,000 per year (or approximately $200,000 per year for an inpatient mental health facility).
• 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.

5. Explain why co-sponsorship is the right thing to do.

• 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 Senator.

Chuck Grassley
135 Hart Senate Office Building
Washington, DC 20510-1501
Phone: 202-224-3744
Fax: 202-224-6020
email: http://grassley.senate.gov/contact.cfm
Web: http://grassley.senate.gov/

Tom Harkin
731 Hart Senate Office Building
Washington, DC 20510-1502
Phone: 202-224-3254
Fax: 202-224-9369
email: http://harkin.senate.gov/contact_opinion.cfm
Web: http://harkin.senate.gov/