Health Insurances

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    • Health Insurances

      I was wondering for the people that have Health Insurances, how well does it work? Does your insurance fight to pay for your medical foods, formula, or nutritional services?? I have struggled with mine over my nutritional services. They fight it and do not want to pay for it, saying they will only pay for diabetic nutritional services...just kinda wondering if anyone else has encountered any problems like I do. I have to appeal all the claims before anything is done and paid for. Hope to hear some responses. Thanks!!
      Joni, 24, PKU
    • RE: Health Insurances


      I might have told you this before but I have Blue Cross Blue Shield. They are usually good about paying for stuff. If anyone ever refuses to pay, we tell them they have to because there is a law that states that in Oregon. The law in Oregon is that insurance companies have to pay for all medical formula, food, and visits. We have no problems once we bring that up. Perhaps you should try to get a law like that going in Montana.

      But then people that don't have insurance get nothing. It's a kind of screwed up situation here in the US. I bet you guys in Europe and Canada get food and formula without too many problems. Am I right? The health care just seems to be better for all there.
      Ali Dietrich
      24 PKU
      Rockaway Beach, OR (USA)
      My PKU Site: The PKU Place
    • Ali~

      I also have Blue Cross Blue Shield but of Montana. Why do I have such problems? Mine is only on the nutritional services. We have a law already done here in the state of Montana for the insurances that have to pay for medical foods and everything, but for some reason they do not want to pay if I get any nutritional help...why would that be so different? Do you have to pay for your clinic there? As of right now we don't have to pay anything for that, but I believe my next clinic there will be a I am sure that will be a huge fight as well!!

      Anyways, any other responses would be great from anyone!!!

      Joni, 24, PKU
    • Ali~
      It might. Beings we have a law and you have a law...Blue Cross and Blue Shield is the same. So I will mention it next time it happens and see what they say!! Whenever you mention Housebill # .... they are like oh crap!! lol Anyways, I will try it next time and let you know what happens!
    • yeah payment for PKU formula and food is a big issue in many places. In Cananda, particularly in ONtario we're fortunate that our ministry of helath pays for all our formula and most of staple foods (such as pasta, bread, but not cookies and other "non-staple food items"). However we've had a very unpleasant experience recently when the ministry tried to tak off coverage PKU guys over the age of 18. For now, as far as I know, everyone in Ontario is still covered.
      Carpe Diem!
    • Hi;

      In the Netherlands only the supplements like Phlexy 10 are paid for by the insurance companies, which is great because they are very expenisive (approx 330 euro for 20 sachets). The other products however are not covered by the insurance company and I have to pay for them myself.

      Paul van Berkel
      Veldhoven, The Netherlands
      ESPKU Boardmember / Project manager

      Don't complain about the snow on your neighbor's roof when your own doorstep is unclean.
    • Hi All,

      I have to say we are probably the luckiest in the UK. All our supplements, foods (Bread, cookies, Egg replacer, Cereal snacks choc bars etc) are covered by the NHS here, although we have to pay around £80 ($150, E115) a year for this cover.

      I know the same is true in Australia also, as I had first hand experience of this. I really don't envy you guys in Canada or the States!
      Richard Noble-Nesbitt
      PKU, 37
      London, UK
    • Hi..I am from PEI, Canada. I am having NO luck with coverage. Formula is covered until the age of 18. Thats it. I am a single mother of 2 and its crazy trying to keep my head above water. Disability Support used to cover it but they cut it out of their program. Where I live..there are only 4 people who have PKU on the whole island. The closest to us is an hour and a half away. I am SSOOOO frustrated. It is so dumb to deny the basic needs of these human beings. My child is just as important as the next guys.....
    • PKU in NE USA


      I live in New York State and I have no problem with anything at all. In New York, insurance is obligated to pay 100 percent of forumla costs and $2500 worth of food a year. Massachusetts has the exact same laws. I know for the most part the northeast is very good about PKU and coverage. Unfortunately, it is not true for all states, as many of them do not require insurance, Medicare, or Medicaid to cover any costs what so ever.
    • In Poland all our doctor visists are paid by insurance and our Formula is covered (we only have to pay a lump if we order it in a pharmacy around 3.5zł per one can of Formula ) We don`t have our food covered.
      Many PKU recipes and information on various benefits for PKUers and families with kids with PKU.
      Language: Polish