coverage

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    • I think it has been discussed before but there are a bunch of new people and I think it would be interesting to hear from people again in the area of coverage.

      What is covered where you live? Do you have to pay for food or formula? Are there age restrictions?

      Formulas here are covered (except for shipping). Sometimes it takes a while for new ones to be covered but they do.

      Some foods are covered as well. These are more staple foods such as breads, baking mixes and pastas, new and luxery foods, such as cheese, cookies and the like are not covered. There is also a difference between what is available in Canada and the US. There are some great foods from Cambrooke (some breads) that I would like, which technically should be considered staple foods and should be covered, but they arent. I dont have the money to be ordering a lot of "luxery foods" especially from the US.

      Technically, after the age of 18 nothing is suppose to covered anymore. This is a glitch in the system (so my doctor says). The government hasnt realized that they can canel our coverage, so my doctor is keeping quiet about it. (Maria may be able to better explain it)


      Believe me I know that we are lucky that our province provides covereage. There are others in our own county that arent so lucky. I know that there are others all over the world who arent so lucky as well. I am thankful for what I have.
      Carrie Hall
      32 CPKU
      Ottawa, ON


      Mommy of 2 kids non-PKU
    • RE: coverage

      re: glitch in system, as it has been explained to me at Sick Kids Hospital, PKU girls of childbearing age (i.e. potental MPKU patients at any point in time) are covered for sure. It's the boys with PKU over the age of 18-19 who might have coverage problems. Overall as far as I know, for now everyone is covered. If worse comes to worse, theoretically girls will be given priority in coverage.
      Carpe Diem!
    • sounds something similar to what I heard. I think I was told that girls are only suppose to be covered when they are actually trying to get pregnant. The boys are suppose to have it stopped. But it hasnt been caught yet. The twins (both 27) are still covered though they are having more problems because they were off diet for a long time
      Carrie Hall
      32 CPKU
      Ottawa, ON


      Mommy of 2 kids non-PKU
    • In the US it varies from state to state. Some states have no coverage while others cover both food and formula (i believe you guys call in supplement in Europe). Some just cover formula.

      In my state, Oregon, I am covered because there is a law that mandates insurance companies to pay for both food and formula. The food and formula is kept in a room at my clinic and is shipped to me as needed and they bill my insurance company. If I had no insurance, I'd be out of luck. We have actually got our insurance company to cover Cambrooke Food's stuff. We order it onto a credit card and they pay us back once it's ordered.
      Ali Dietrich
      24 PKU
      Rockaway Beach, OR (USA)
      My PKU Site: The PKU Place
    • When I was a child, our health insurance covered everything: formula and food, cookies and things like that included! Well, I was lucky, cause other German pku-children didn't get support, even though they were at the same insurance! (My grandmother was working at the health insurance company and she managed it somehow that they would pay everything until I begin to work)

      And now, they only cover the formula and actually I've seen a topic on a German forum that it isn't quite sure whether they have to pay that in the future. That would be awful...

      I wish the health insurance would at least pay for the bread and pasta cause these are the things which are essential for me.
    • my two cents from Germany:

      formula is still coverded by health care system but, as Kate2204 told, everytime there is a restructuring, they discuss if it still be covered in future, it may sound perverse but the number of PKUers is to little.
      A time ago there was a rumor that health care system will stop screening. It is cheaper to pay for some handicapped than to pay the screening and the formula. Only money is interresting in this system, they do not care about the people. I really could not believe it when I heard it first.
      pku-info.org
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    • Original von j_h
      (...)
      A time ago there was a rumor that health care system will stop screening. It is cheaper to pay for some handicapped than to pay the screening and the formula. Only money is interresting in this system, they do not care about the people. I really could not believe it when I heard it first.


      I can't really imagine that they will do so ... but who knows.

      I guess here in Austria you will get the forumla for free, at least for some years!

      greets
      GreX
      PKUBoard.info - since 2004 - Invite your friends
    • In Australia the government pays for our formula but we do have to pay the script price which is usually $28.00 each time which isn't two bad. The formula is ordered from the distribution centres by our pharmacists. The family and carers of PKU people and kids receive the carers allowance which is about $74.00 a fortnight and everybody gets including the PKU adults $210 dollars from Aged Care department if the person with PKU attends clinic and sends in blood tests which is fair.
      As everybody can are really fortunate here in Australia.
      The screening for PKU and lots of other metabolic disorders are done automatically in our hospitals all over Australia. The babies at The Children's Hospital at Westmead in Sydney also have a BH4 test done automatically as well!
      :P
      debbie colyer