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