PKU and Insurance

PKU and Insurance

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PKU and Insurance

February 28, 2011 in Uncategorized

I was wondering if anyone else has run into this problem. I have a 3 week old daughter who has PKU. I called my insurance to see how much was covered for her dietician and her genetic consultation visit but they said they cover nothing . I asked them why they said my employer does not have it in their plan. I was very upset . I am just getting used to the idea of her having pku. I called our state insurance called badgercare. I live in Wisconsin. They said I can apply for benefits and I should be able to get insurance through them. I might have to pay a little towards the insurance but thats ok as long as she gets the correct care.

3 Reviews of PKU and Insurance

  1. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Please send me an email so I can forward you some info…. My name is Katie, 26, with PKU. I live in NY. My email is

  2. Registered: Dec 26, 2010

    Posts: 0

    Plano, Texas

    Hi there. My name is Wendy and I have a 8 month old son with PKU (live in TX). Total shock to us and it took me a while to get through all the insurance “stuff” (using a nice term). I don’t know what kind of insurance you have, but I think the medical needs should be covered just like any other disorder/medical condition. Mine is blue cross blue shield and I have to pay my normal 20% after deductibles. As for formula, it should also be covered at your normal co-pay rate. I had to send in the prescription info and a letter from the doctor but once I did that, all has been good! I hope you figure it all out. I hope you and your daughter are doing well. I know this was posted a few weeks ago but I vividly remember where I was 8 months ago and it is a very stressful time. Feel free to write me back at Thanks!

  3. Registered: Dec 26, 2010

    Posts: 0

    Plano, Texas

    Btw, you might try going up the food chain with your insurance company. Most of them don’t know about PKU so you may have to have your hospital “educate” them. Them not covering it would be like not covering diabetes which I am sure they do cover…..

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