The Young PKU Adult and the Problems of Medical Insurance

Cody Davis

Cody Davis, a lost to follow-up patient with phenylketonuria (PKU) talks about the problems of trying to obtain medical insurance as a young adult to cover the medical foods needed to treat his PKU.
This interview was made possible by a sponsorship from BioMarin Pharmaceutical Inc. 
Rare Disease Report has sole control over the editorial content.


When you suddenly 18 Medi-Cal  doesn't really want to kick in the way they did when you were a boy.  I had parents who worked for themselves. They had a store so Medi-Cal was the way to provide
insurance through the state of California for me to get my medicine or for me to go to clinic.
The clinic, out a pocket with no insurance, is about eight hundred dollars and being two and a half hours away from place i live makes it pretty expensive – especially if it's going to cost you about a thousand dollars every time you go see a clinic every three months.
I used to work at the In & Out restaurant and when I was 17,  I was making fourteen hundred dollars a month. Medi-Cal wanted eight hundred dollars a month from that. How am I supposed to pay for just a normal car? How am I supposed to pay for a rent?  As a PKU patient, as a human,  as just a normal teenage boy, the medical insurance costs takes you out of the aspect of life that every other kid gets a chance to have. You don't get the same chances at all because you have a diet and a condition that costs a lot of money.
So insurance companies we need help.  I have insurance now that I pay two hundred dollars a month and I still have a copay.
I am not saying insurance companies suck. It's just that they don't know how to help just as much as we don't know how to figure out how to get them to help us.
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