_______________, 2004

Dear Representative:

I am writing to you as a parent of a child who has Phenylketonuria (PKU) to urge you to support and pass HB 4142, which will permit insurance coverage for formula and modified low protein food products for treatment of PKU. HB 4142 is presently in your Rules Committee.

PKU is a metabolic disorder occurring in 1/12,000 births and has been included in the State’s Newborn Screening Program since 1965. Currently, there are over 250 children and adults being treated for this condition in Illinois. Undetected or untreated PKU will result in severe mental retardation in infants. The mental retardation can be prevented by a very strict, low protein vegetarian diet, which includes a special medical food (PKU formula) and other specially manufactured low protein foods to provide the nutrients lacking in the diet. Because these medical foods are specifically formulated to treat PKU and other metabolic disorders, these products are very expensive, around $2,500 per child per year.

Several low protein metabolic supplements have now been developed for use in PKU diet control. These include low protein pastas, baking mixes, gelatin deserts, cookies and flour. These products broaden the variety of foods an individual may use to maintain dietary control of PKU. The PKU diet is lifelong and these products are also very costly. A 17.5 ounce box of low protein pasta costs $5.40, a package of crackers is $5.00, a 14 ounce box of baking mix used to make one loaf of bread is $6.40. These special foods help make a very difficult dietary regimen tolerable and improve the medical well being of children and adults with PKU.

I urge you to consider passage of HB 4142 to enable insurance coverage for these medical foods for treatment of PKU. Passage of HB 4142 will greatly improve the quality of the health and welfare my child and all others afflicted with PKU in Illinois.

Sincerely,

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