I bumped into this sight and thought to myself thank goodness…
I am hopeing that there might be help out here somewhere, my close friends have a son that was diagnosed with PKU at birth. They are at their wits end trying to find health coverage for him. All the companies they have contacted will not cover him because they classify PKU as a pre-existing condition. Any help or advice would be greatly appriciated!
Can I ask where you guys live? Because I know in certain states insurance just won’t cover low protein foods and formulas because it isn’t required in the state. nBreanna n15 w/CPKU
We live in Wyoming. Any thoughts?
Give me a second okay, I’ll look it up and let you know if insurance is required to cover formula, low protein foods ect. If Wyoming is required then they should have to, if not I’m not positive what you can do. nBreanna
I’ll give you a link to a page that shows what each state covers. I didn’t see Wyoming on here, but I might have missed it. I’ll let you check it out, if not I’m not positive what your friends could do besides talk to their doctor or dietitian and see what they say.
thank you I will cheak it out!
My Daughter has pku and we live in Melbourne Florida Does anyone know what kind of assistance we can get to cover her supplements It[/FONT]s so expensive as we all know
Hmm, I’m not really positive. This is the one thing I’ve never really known much about since I’m only 15 so I don’t have to deal with much of this. All I know is Wisconsin provides me and my sisters formula/food ect.
But if you all really want for sure answers I would suggest getting a hold of your doctor or dietitians and then also your insurance company. That would probably be where you could get the most accurate answer.
hey, i was told by my dietician that the government was giving a grant to people with pku, of 1800.00 for food. you might want to ask your doetician, that’s who told me. and had all the paper work for me to fill out. i went on the website right there in her office and ordered about 500.00 dollars worth of stuff.
you might also want to look into the Metabolic Formula Program.
try contacting the Division of medical genetics director
email@example.com. for information about the program i’am sure she would be happy to here from more people with this situation, especially children. make sure you mention the program name. Metabolic Formula Program. they are excepting applications now deadline is june 30th. if she can’t help, i’am sure she knows were you can turn to.
What kind of healthcare coverage did your friends have when the baby was born (what company or medical assistance)? Have they had continous coverage since the baby was born? I work in the health insurance industry. I’ll help if I can.
I am sorry I havent responded… I believe that he was covered under title 19 (medicade)when he was boarn but then my friend got a new position at work that came with higher wages and then insted of the company continuing with a group coverage plan they switched to an individual plan and the mom went to work part time to help out for medical costs and such to help with the costs of PKU. now the baby is 4 yrs old and they cant get any assistance but cant afford every thing on their own. This seems to be the problem for a lot of people. Here in Wy. (that we know of) there are only 4 or 5 cases of PKU and I think that is also an obstical for them because that isnt many people and no one wants to help such a small group. they have looked for help in so many places and have been turned down so often that they are ready to move to a state that has program in place to help them. the unfortunate part is all their family is here and they have lived in wy. for 25 + years (we are in our 20’s)
I came accros this sight and every one is so kind and generous god bless you all for helping us out
thank you also codys friend
i believe through my friends employment they had blue cross blue shield of wyoming and then cbsa but I am not sure of what it is currently other than individual coverage – the company has switched insurance providers a few times and that is what has left them uninsured
That really stinks that his company did not offer better coverage. Now that the baby has been with some kind of coverage for more than 61 days an insurance company can deny PKU treatment as pre-existing. Many policies will not cover pre-existing conditions without you having to pay a large fee first. Also some insurance plans will not cover PKU charges as they are considered dietary rather than health related. These would be things to keep in mind and ask when your friend contacts insurance companies. Also ask how long the pre-existing clause lasts.
It’s unfortunate that these circumstances are making this so difficult for your friends. I’m sure they don’t want to move away from friends and family. But if it comes down to that may I recommend Wisconsin. Formula and some basic food necessities (baking mixes, noodles, rice, etc.) are provided by the state. Also there are enough families that we try to get together once in a while. My family and I live in western Wisconsin, right on the Mississippi River. We travel up to the University of Minnesota in Minneapolis, Minnesota, for Easton’s appointments. It is a very nice children’s clinic. In about two weeks they are offering a culinary (cooking) expo.
I’m sorry I didn’t have better insurance advice/news. nTell them to keep their chins up.
Sorry I couldn’t be much help aswell…wow, Sarah I didn’t realize how confusing insurance is. Anyway, I agree with Sarah, my mom has always told me that from what she has heard from alot of other PKU patients/parents/doctors Wisconsin is one of the better places for Phenlyketonurics to live.
Are you going to the cooking expo next weekend? If so have fun, I can…I’ve got dance stuff that day.