PKU.com Community Discussion Forum What’s the Phe? questions about Kuvan and self phe test Reply To: questions about Kuvan and self phe test

#8725
Avatar of Myungjune
coupmaker
Member

I appreciate your quick responses.

I think I need to clear some points. My baby is son not duaghter :-) And my doctor said that my baby doesn't responsive to BH4. He hospitalized at phe level 35mg/dl and had 24 hour test. (also Kuvan usually test only 24hours? Biomarin says 30days trial program. But in Korea, there is only one mecidine BH4 and only one 24hours test) Anyway, even though BH4, phe level maintained over 20 mg/dl.

I asked my doctor kuvan. But he said that it's just in test phase and not commercialized. So I told that in United States it's already produced and prescribed, but he kept saying we got only BH4. That made me very disappointed.

Anyway, going to United States is not easy decision. There are two reasons. first,my baby is non-responsive for BH4, so I'm afraid that my baby would not have any effect of kuvan.(because Biomarin says kuvan is BH4 responsive type)

second, I'm Korean and have no insurance in United States. Would give me some information about the expense of Kuvan in United States or Canada? Especially in case of no insurance at all.

I'll wait your reply.

Thank you, again.

p.s. Biomarin says new drug for non-responsive for Kuvan, PEG-PAL, is developing. I hope this drug to get FDA approval and to be commercialized ASAP.

one more p.s. Korea is a very small country, and we have only 200 PKU patients and few specialist in this area. So any Korean can find who is a specialist(There are only 2 doctors in Korea). Could you let me know any doctors, hospitals, or medical centers best in United States?  

Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional