Pku and health insurance

Everyone in the pku community can all agree that dealing with insurance is annoying. For people like us or anyone in the rare dieases comunity can relate to the fustrations of insurance. Alot of insurances will not cover rare dieases like pku. The reason why you might ask? Its because in there eyes they dont see the reason to cover it if theres not enough people in the world that have it. Which if you ask me is really stupid and defeats the whole purpose of being RARE. 

But if its one thing i learned since I turned 18 and had to take over insurance responseabilties is dont back down. 

What i mean by that is... Dont let insurances bully you or tell you no. As long as you have a clinic behind you ready to help you. It will help you a whole lot. 

What ever the case may be dont take no for an answer and be an advocate for your self or your child because no one will truly fight for what you need until you put your self our there and have your clinic back you up!