Community Discussion Forum Adults and PKU Off the diet Reply To: Off the diet

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As the father of four children of which one has CPKU I will tell you why many of the people are off diet (my opinion).
The cost $$.
It is very expensive to purchase the formula then add to that the doctors do not want to write a prescription if they can not follow and see the patient – and many of those who are above the age of 18 – 21 (depending on the state laws) are no longer covered by the state.
This represents a huge burden at $40.00 per can and you must buy a case of six at a time ($240.00) which may only be a 4-5 week supply. Do the math and this comes to over $2,000+ per year for young adults who are tyring to go to college or just getting started in their careers.
I am fortunate to have a good job and insurance. But in my state of Mississippi the group insurance does not cover my sons formula (he is 3 years old) even though I have group insurance and it is as important to him as insulin is to a diabetic. This really frustrates me as you can imagine. In fact the insurance company said to me the only way they would cover the prescription formula is if my son was fed through a tube in his belly.
So my stay-at-home wife and I pay out $240.00 every 4-5 weeks for a case of formula as well as paying our monthly group insurance premiums of $380.00 for the family as well as we must purchase at least $200.00 of low pro foods from Cambrook foods out of our own pocket each month.
Though it is not mentioned in the forum here – I believe this is why many people are “off diet”.
TC – Father of “West” w/ CPKU

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