Community Discussion Forum Adults and PKU Health insurance for adults with PKU Reply To: Health insurance for adults with PKU

Avatar of Missy

Hi Becca,
I am still fairly new to this site. I’ve been registered on it for some time but just forgot what the sites link was LOL. Finally found it.
Anyhow, I am 32. and I have battled with trying to purchase insurance (as I didn’t get any thru where I worked) for years. I have gotten so many denial letters due to my PKU. They said they will not cover me at all because of PKU being a pre-existing condition. I tried asking if they can cover me for regular medical and exclude the PKU but they won’t do that. And besides my main medical bills are my PKU as I don’t get sick very often. Plus in 2004 I was diagnosed with endometriosis and that is another pre-existing condition that insurance companies won’t even take me for.
It sucks because I am still paying on my bills from before I got pregnant. I am on healthy start healthy families medicaid while I’m pregnant. But my pku clinic is going to try to help me to get to stay on the healthy start healthy families medicaid after the baby is born because of having to be followed up still after the baby is born. Plus thru the healthy start healthy families medicaid program they do cover low income parents with children in the home. I told them even if I had to pay a premium and a copay that would be fine.
So believe me I know exactly what you are going thru. Luckily the state of ohio does provide my formula and the cost of the foods doesn’t kill us. It is just the medical bills that are killing me when having to pay out of pocket and no insurance company will cover me cuz of my pku especially.
Missy Badalyan n32 CPKU nAkron, OH n26 weeks pregnant

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