Petition Closed
Petitioning The U.S. Senate

URGENT: Save the livelihoods of 15,000 Americans diagnosed with PKU who will lose their treatment!

from on .


---> Please sign our updated petition by clicking here!  _________________________________________________________________________



Have you ever heard of Phenylketonuria (PKU)? Look at a diet soda or sugarless gum and you will notice a huge warning in bold that reads, "PHENYLKETONURICS: CONTAINS PHENYLALANINE". That's because it is highly toxic to over 15,000 Americans.
The effect of this toxicity is not death, but slow brain degeneration leading to severe mental impairment. Sadly, this simple amino acid is practically in everything, so PKU individuals must restrict natural protein and ingest specific medical foods to maintain a normal IQ. Fortunately, nationwide newborn screening detects this genetic disorder at birth and dietary treatment is started immediately. Furthermore, these medical foods pave the way for a normal life. It’s not like chemotherapy, which sometimes cures cancer. This medical food is 100% effective in making the difference between an intelligent, productive individual and a completely mentally disabled individual. (see video)

Unfortunately, there is absolutely no mention of coverage for PKU or other allied disorders in the current Health Care Reform Bill. This means the decision to cover essential medical foods will stay within the jurisdiction of the individual states. Some states will only mandate that insurance companies cover a small percentage, while other states believe that once you turn 18 your PKU magically disappears. (However, genetic disorders, by the name itself, implies its in your genes). This lack of uniformity amongst the states means that our nation is condemning thousands to either a group home or a mental institution (subsidized by the taxpayers) or poverty. Insurance companies may charge individuals with PKU well over $1000 per month to maintain their current IQ or drop their medical food coverage altogether... and once their IQ levels drop, the loss is permanent.

Don't let this happen.

Urge your representative to support the Medical Foods Equity Act and fix this careless mistake. The Medical Foods Equity Act will mandate that insurance companies across ALL 50 states will be required to cover the cost of medical foods.

Please sign the petition using the form at the upper right-hand corner and then tell your friends.

Letter to
The U.S. Senate
I am writing to you to ask for your support regarding the Medical Foods Equity Act. This bill is crucial for individuals diagnosed with PKU. 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. Ingesting these medical foods consistently will allow individuals diagnosed with PKU to live perfectly normal lives.

The Medical Foods Equity Act would require ALL insurance companies to cover the cost of medical foods (both formula and food 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 and Medicare.

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

Reasons to support the Medical Foods Equity Act include:

• The cost of treating an individual with untreated PKU can be up to 13 times the cost of providing proper treatment from the beginning! For every $1 we spend on treating PKU, we actually save $5!
• 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 FDA definition of medical food is "a food which is formulated to be consumed or administered enterally under the supervision of a physician and which is intended for the specific dietary management of a disease.”
• 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.
• States screen for disorders in order to prevent the complications of treatable conditions. Ensuring adequate insurance coverage is a logical extension of the Newborn Screening system.

Support for the Medical Foods Equity Act is critical and time-sensitive.

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. In addition, 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.

Supporting the Medical Foods Equity Act would not only save money, but it is the right thing to do. There are over 15,000 individuals with PKU who want to remain healthy and productive. It would be disadvantageous for our nation to force these individuals to become incapacitated.

I urge you to support the Medical Foods Equity Act and save the livelihoods of over 15,000 families who are affected by PKU.