Community Discussion Forum Adults and PKU Health insurance for adults with PKU

Viewing 10 posts - 1 through 10 (of 10 total)
  • Author
  • #4418
    Avatar of Rebecca

    I am having a hard time finding an insurance company that will cover me under a health insurance plan. If anyone has any advice about a company they use or other information, it would be greatly appreciated. becca22

    Avatar of Rebecca

    hi becca,
    my daughter has pku she is three. i know here in texas it is mandatory, that insurance has to cover it (not a 100% though)…what state do you live in? ni will do some research for you.

    Avatar of Rebecca

    Hi thank you for answering my forum. I live in Florida. My formula is covered by the state. I am not to concerned about the low protein foods as much as the medical coverage for Dr. visits and blood work. Also major medical if an accident occured. The insurance I have now is very high. It is through a group plan that ends in February 07′. I have tried getting individual insurance through two companies and they denied me. Thank you becca22


    maybe you should ask your special pku docter?!?! heather <3

    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

    Avatar of Osgood

    I own my own wedding consulting business and was able to find a program for small business owners that accepted all pre existing conditions. It is only a parttime business but it was easy to qualify for…business checking, business cards, and some contracts…
    I was denied 8 times before I found this…
    HealthCare Group of AZ

    Avatar of KELLIE



    My name is aaron and I am also having trouble getting my ins to cover the formula…I have teamed up with my doctor and have sent a formal complaint to the alabama state ins commission, I have also contacted a group of attorneys that are on stand by if I need their services I am ready to fight the Insurance company to the end, my doctors have also put me in contact with a local advocacy group of trial lawyers Iam ready to fight the ins company to the end but I also need everyone’s input and support out there with pku this might be a long road…any input by anyone is appreciated thanks aaron

    Avatar of donna

    hi iam catcocoa. this is for anyone outthere that could help me. i have two helth care ins but they dont cover my low pku foods. how can i get them to cover them. my levels are ok but thay could be beter.
    thanks. catcocoa.

    Avatar of Tracie

    Okay everyone it all depends on what state you live in. nUsually here is how it goes: nAlmost impossible to get insurance on low-protien foods.Why?
    It is considered a food and not medical. nCCS will do 100% coverage for kids up to the age of 18 years. nThat includes your Office visits, formula etc.
    Now if you live in the state of CA. nYou can get GHPP ( Genticlly Handicaps Persons Program )That is also 100% coverage.
    Now as for myself i pay for everything nothing is covered. nMy formula alone is $305.00 a month out of my own pocket. nBecareful and do your research within your state.
    I don’t buy medical foods too expensive. nSo i come up with my own crazy concaucsions. nGood luck to you all. Any questions Please ask

Viewing 10 posts - 1 through 10 (of 10 total)
Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional