Community Discussion Forum Adults and PKU Being deprived of your medication. Reply To: Being deprived of your medication.

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I totally hear your frustration with this.  Each time I switch formula, my insurance company gives me a VERY hard time and denies coverage for it.  Well, last year I switched to a new formula again (camino pro) which is about 700 per month.  They continue to deny payment and have not paid it since April.  Make a long story short, in NY formula must be covered, but they are simply not doing it.  After months and months of fighting it, I had to bring it to the state insurance commissioner.  I am very annoyed with it as well because without formula on a PKU diet, our health is severely impacted.  When I was younger, I wouldn't take my formula and unfortunately, had several negative health experiences from it.  It is so unfortunate that there is not more knowledge out there for people in the medical field to realize how serious PKU can be if not treated (not only low-pro diet wise, but also without formula!!!)  Do you go to a clinic?  Do they have any advice or direction for you to take with your insurance?  By the way… I am Katie and 25 with PKU.  In the meantime, try to enjoy your holiday :)  Let's hope the new year brings better things for both of us!

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