PKU.com Community Discussion Forum Adults and PKU State coverage

Viewing 9 posts - 1 through 9 (of 9 total)
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  • #8026
    Avatar of Caroline
    cmbell
    Member

    I have been trying to do some research about state coverage for the formula, but have really not come up with much. I live in VT and know the state covers my formula so I get it free! How wonderful, that stuff is expensive! What other states cover the formula? I am especially interested in the Northeastern states. Thanks for your help.

    #8029
    Avatar of Nick
    arkham
    Member

    Check here for PKU formula and food coverage by state: http://www.pkunews.org/rights/lobby6.htm

    #8036
    Avatar of Jennifer
    jenn_harney
    Member

    I’m from Nebraska and I know I get my formula paid for!! I don’t know what I’d do if the state didn’t!! Our state ALSO now allows us basically a $2000 annual low-protein PKU food shopping spree! Probably about 15 years ago a bunch of PKUers and their parents went to the state asking for money in order to buy low-protein food products. Apparently the arguements were a success because now I only pay for my own low-protein food if I would reach the $2000 limit. This is something I think every state should adopt since it is SOOO important for us to stick to the diet, and sometimes the only way to do it is using low-pro food. However, “our” food can cost probably 10 times more than “normal” food!! I’d recommend getting your state involved in a similar program!

    #8040
    Avatar of Breanna
    BreaMarie91
    Member

    Wisconsin covers formula, basic foods like pastas, baking mixes, peanut butter etc, and my favorite blood tests lol.

    #8066
    Avatar of Nina
    polish
    Member

    New York State is covering formula also, and that`s so good cus if the state wouldn`t cover it, I wouldn`t be able to afford it.

    #8135
    Avatar of petrina
    batwoman
    Member

    I live in Ireland and thank goodness everything is free.I know we are so lucky. My hubby and i were going to live in the Usa (New Jersey or Brooklyn ) for a while just to experience life in another setting and i have lots of reletives there.One of the main reasons we decided against it at the last minute was my diet and how not everything is covered on the health system.We wanted another baby and i just couldn't risk not having the excellent care we get here in Ireland….. I laugh as i tell my friends that most people do their shopping in a supermarket but i do my shopping in a chemist!

    #8245
    Avatar of Caroline
    cmbell
    Member

    What about Utah or Colorado?  It's sort of frustrating that when I consider moving, I have to consider if the formula is covered or not.   Grrrr.  Thanks to everyone who has already responded.  I have checked out the chart of pkunews.com, but have greatly difficulty understanding what it means.  Can anyone explain it?

    #8249
    Avatar of Mary
    mcsmiles33
    Member

    I live in Ca and I recieve my formula for free. I was also part of a petition 10yrs ago to recieve an allowance for PKU foods. Shortley after an allowance of $2500 annually was awarded to each individual. If you happen to go over my dietican made it sound like it would be no problem to get anything over approved. I know it's not the states you were asking for but I know more information is better. I hope this helps.

    #8257
    Avatar of TERESA
    TGCLPKU
    Member

    I BELIEVE MY STATE OF FL ALSO COVERS IT. STILL CHECKING ON IT.

Viewing 9 posts - 1 through 9 (of 9 total)
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