Community Discussion Forum Adults and PKU Any1 from australia and in their 20’s with PKU? Reply To: Any1 from australia and in their 20’s with PKU?

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Kate wrote…


I was at my PKU clinic last week and I asked my PKU doctor about Kuvan coming to Australia. She told me that they would absolutely and positively not be bringing Kuvan or any LNAA treatments like PheBloc, NeoPhe etc to Australia, ever.

The reason cited for this is that PKU is easily managed with a low protein diet and that any additional treatment to that isn't necessary.

OMG!! I just spoke to my mother about maybe getting Kuvan and other treatments availiable in the US, and she told me that New Zealand getting these treatment hinges on wether or not Australia gets them, as most of our low-profin products and other PKU treatments are shipped over from Australia. We don't get things from the US direct as we are such a small country with a small population of PKU.
I believe that myself and plenty of PKU NZers would be glad to get behind any campaign because what australia gets affects us as well. If there is something that will make our diets and lives easier, we would like to hear about it, and have a chance of getting it.

Ok cancel all that, I have now talked to some people and it seems our docter, Callum is fighting very hard for Kuvan to come to New Zealand. Which is pretty awesome. I really hope that Aussie manages to work something out too .

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