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TREVOR MERCHANT
Fairfield, VT - Franklin County - 3rd Grade at Fairfield Center School
9 years old
Interests: Soccer, Baseball, Basketball, & Math. He is a Lego maniac!
"The PKU Law would mean that I
could eat a lot more when I am hungry
and my parents wouldn't have to pay
so much money for the food."
Phenylketonuria (PKU) is a rare, Inherited metabolic condition. People with PKU lack an enzyme and are unable to metabolize phenylalanine, an amino acid. Phenylalanine is found in all foods that contain protein. This condition results in severe cognitive impairment (mental retardation) and other neurological deterioration when a very strict, low-protein diet is not begun in the first few weeks of life, well-maintained and followed life-long.
The paragraph above is similar to what the doctor may have told us. What we tell people is that our son has PKU and that his body does not break down protein. Therefore he has to drink a special formula, that smells and tastes terrible, every day for the rest of his life, so that he will grow normally. Also he has to follow a very strict diet which eliminates most natural protein, including no meat, milk, eggs, cheese, legumes, nutrasweet, bread, pasta, cookies, cakes. He is allowed to eat measured amounts of fruits and vegetables. There are specially processed low protein products available, such as pasta, rice and flour which help a great deal with this diet.
The formula is very expensive. Our son uses a product called Phenyl-Free which costs approximately $20 per can under a special contract with the State of Vermont. One can lasts about two days. We have been fortunate that Vermont has provided formula for PKU children thus far, until the age of 21. The low protein products are also very expensive and are only available through the mail. Most of these products are made in Italy. For example, a seventeen ounce box of low protein rice costs $7.75 per box; a seventeen ounce box of low protein spaghetti costs $8.90; an eleven ounce box of low protein baking mix (flour) costs $11.00.
Insurance companies have refused to pay for the formula or low protein foods. The formula Is not a prescription and the foods are considered supplements. Also, once the children reach 21 years of age, they no longer receive formula from the State, and with budget cuts, it is unsure how long we will receive formula.
I began working with Maureen Mitchell from Parent to Parent In November of 1997. I was interested in formulating legislation to mandate insurance coverage for the formula and foods for PKU children and adults. It has been great. Maureen introduced me to Peter Youngbaer from VCDR, Vermont Coalition for Disability Rights. Parent to Parent filed an application with the VCDR and they agreed to help us pursue this Legislation. We started calling other parents to call their senators and begin educating people about PKU.
On January 20th we testified before the Senate Health and Welfare Committee. We had doctors, the Commissioner of Health, and parents of children with PKU all explaining the need for this Legislation. The Bill was unanimously approved by the Senate, and is now before the House Health & Welfare Committee waiting for final approval. We are almost there!
I cry every time I think about what this Bill would mean to my family. Of course I sometimes wish I never had heard of PKU either, but it is part of our lives and we must make the best of it for our son. This Bill would really make a difference in our lives. Just having foods available for our son will be a big help, and knowing we will have coverage for formula is the greatest relief.
Our son is Trevor Merchant and he is one of the greatest joys in our lives. We live in Fairfield, Vermont, where Trevor is in the 3rd grade and doing very, very well. He loves soccer, baseball and Legos the best. Also, his most favorite thing is Ben & Jerry's Sorbet, which is low protein! ©
Linda
Merchant, Trevor's Mom
STATE CHILDREN'S HEALTH INSURANCE PROGRAM:
As a result of the federal "Balanced Budget Amendment" 48 billion dollars have been made available to states wishing to expand health care coverage to children! Millions of dollars will be coming to Vermont over the next 5 years to expand our Medicaid program! In March, Vermont submitted a formal proposal to the Secretary of the US Department of Health and Human Services (HHS) describing our plans to expand Medicaid. Hopes are the Dr. Dynasaur Program will be expanded to cover children up to 300% of poverty! Great news indeed! It is estimated that almost all the children in Vermont (all but approximately 4%) would be eligible for Medicaid coverage if the expansion is approved. There, most likely, will be a "cost share" which means that parents over a certain income (yet to be determined) would pay a small amount, or premium, for their child to receive Medicaid coverage. ©