Community Discussion Forum New to PKU cure? Reply To: PKU cure?

Avatar of Jennifer

wow! your results with kuvan sound amazing bre!! but do you receive the pku newsletter?? there is a lot of controversy over kuvan right now. many feel there haven’t been enough studies to determine the long-term effects of using kuvan. virginia schuett (THE NEWSLETTER’S EDITOR!!) is against it herself. she also has a renowned doctor whose been studying pku for a long time review why he doesn’t think it should’ve been approved by the FDA. another thing about kuvan that concerns families is the price. with a median of about $75,000 per year, it’s challenging to convince an insurance provider this new product is necessary. also, once we are 25, we have to get our own insurance. there IS a maximum amount of money we are given from insurance companies in our lifetime. at $75,000 a year, i’m fearful i’d meet that quota pretty fast. so i guess it’s all a matter of personal opinion. if your willing to risk taking the medicine without knowing the longterm effects and have the money to pay for it, then go for it, but if you have your diet under control already and not a lot of extra cash, i wouldn’t take it.

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